National Guidelines onAccessible Health andSocial Care Services
people caring for people
A guidance document for staff on theprovision of accessible services for all
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Title: National Guidelines on accessible health and social care services - aguidancedocumentforstaffontheprovisionofaccessible services for all
Document reference number: V.1
Approvaldate: June2014
Revisiondate: June2016
Documentdevelopedby: NationalAdvocacyUnit, HSEinpartnershipwiththeNationalDisabilityUnit, HSEandtheNationalDisabilityAuthority
Contact details: Caoimhe Gleeson NationalSpecialistinAccessibility NationalAdvocacyUnit Email: [email protected]
ISBN: 978-1-906218-80-5 Thisdocumentissubjecttoreviewandmaychangeatanytime
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NATIONAL GUIDELINESAccessible Health and Social Care Services
Contents
Acknowledgements 1 Foreword 2
1. Introduction 4 1.1 Providingresponsivecareforserviceusers 4 1.2 SomekeyfactsaboutdisabilityinIreland 4 1.3 Arangeofsolutions 62. Purpose 7 2.1 Purposeofguidelines 7 2.2 Structureofguidelines 7
3. Scope 9
4. Legislation and related policies, procedure and guidelines 10 4.1 Overviewoflegislationandotherrelatedhealthcarepolicy 10 4.2 TheNationalHealthcareCharter,YouandYourHealthService 10 4.3 FutureHealth,AStrategicFrameworkforReformoftheHealth
Service2012–2015 11 4.4 IntegratedCareGuidance:Apracticalguidetodischargeand
transferfromhospital 12 4.5 TheEqualStatusActs2000–2008 12 4.6 Part3,DisabilityAct2005 13 4.7. NationalDisabilityAuthorityCodeofPracticeandGuidance 13 4.8 NationalConsentPolicy 14 4.9 TheNationalEmergencyMedicineProgramme 15 4.10 Other 15
5. GlossaryofTerms/Definitions 16 5.1 Glossary 16 5.2 AppropriateTermstoUse 18 5.3 Abbreviations 19
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6. RolesandResponsibilities 21 6.1 AllStaff 21 6.2 Seniormanagementrole 21 6.3 AccessOfficerrole 23
Part One: Guidelines for all Health and Social Care Settings1. Guideline One:Developingaccessiblehealthandsocialcareservices 26 1.1 Ask,Listen,Learn,Plan,Do 26 1.2 Examplesofpolicies,proceduresorguidelinesforstaff 29
2. Guideline Two: Developing disability competence 30 2.1 Buildingcapacityandunderstandingforallstaff 30 2.2 Onlinetrainingresource 31 2.3 Tailoreddisabilitytraining 31 2.4 Professionaleducation,trainingandprofessionalstandards 31
3. Guideline Three: Accessible services - general advice 32 3.1 Donotassume-ask 32 3.2 Makinganappointment 32 3.3 Showflexibilitywhenschedulingappointments 33 3.4 Missedappointments 34 3.5 Planvisitsforroutinecheck-upsorsurgeryinadvance 34 3.6 Queuingtobeseen 35 3.7 Fillingforms 35 3.8 Informationandnotices 36 3.9 Mobilityaids 36 3.10 Focusontheperson 36 3.11 Concurrenttherapeuticorcareneeds 36 3.12 Maintainconfidentiality 37 3.13 Health Promotion 37 3.14 IntegratedDischargePlanning 38
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4. Guideline Four: Communication 42 4.1 Generalprinciplesofgoodcommunication 42 4.2 Establishhowthepersonpreferstocommunicate 43 4.3 Notifyrelevantstaffofthepreferredmethodofcommunication 43 4.4 Communicatingwiththeperson 43 4.5 Communicatingwithapersonwhoisunabletostandorwhousesawheelchair 45 4.6 Communicatingwithapersonwithspeechdifficulties 45 4.7 Communicatingwithapersonwhohasavisualimpairment 46 4.8 CommunicatingwithapersonwhoishardofhearingorDeaf 48 4.9 Communicatingwithapersonwholipreads 50 4.10 CommunicatinginwritingwithaDeaforhardofhearingperson 51 4.11 CommunicatingwithapersonwhousesIrishSignLanguage 52 4.12 IrishSignlanguageinterpreters 53 4.13 Deafinterpreters 54 4.14 IrishRemoteInterpretingService(IRIS) 54 4.15 DeafPeerAdvocates 54 4.16 Communicatingwithapersonwhoisdeafblind 55 4.17 Communicatingwithapersonwithanintellectualdisability 55 4.18 Othercommunicationchallenges 57 4.19 Communicationboards 59 4.20 Communicationpassports 59 4.21 Lámhsigns 60 4.22 Inductionloops 60 4.23 Communicationaidsaspartofcommunicationstrategy 60 4.24 Provideinformationaboutcommunicationaidsavailable 60
5. Guideline Five:Accessibleinformation 61 5.1 Whyprovideinformationinanaccessibleformat? 61 5.2 Informationaboutaccessibilityofpremisesandservices 61 5.3 Providinginformationindifferentformats 62 5.4 Sometipsonwritteninformation 62 5.5 Largeprint 63
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5.6 Usepicturesandsymbols 63 5.7 EasytoRead 63 5.8 Website 63 5.9 Videoandaudio 64 5.10 Braille 64 5.11 Furtherinformation 65
6. Guideline Six:Accessiblebuildingsandfacilities 67 6.1 Generalinformation 67 6.2 Providinginformationaboutaccessibilityofpremisesandfacilities 68 6.3 Pointstoconsider–Achecklistforaccessiblebuildingsandfacilities 68 6.4 Furtherinformation 75
7. Guideline Seven: Consent 77 7.1 Generalprinciplesofconsent 77 7.2 Whatisvalidandgenuineconsent? 77 7.3 Importanceofindividualcircumstances 78 7.4 Informingthepersonbeforegettingconsent 78 7.5 Howandwheninformationshouldbeprovided 79 7.6 Howshouldconsentbedocumented? 80 7.7 Capacitytoconsent 81 7.8 Emergencysituations 82 7.9 Consent,childrenandyoungpeople 82
8. Guideline Eight:Roleoffamilymembersandsupportpersons 83 8.1 Roleoffamilymembersandsupportpersons 83 8.2 Righttoprivacy 84 8.3 Discharge 84 8.4 Carerneeds 84 8.5 Advocacy 84
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PartTwo:Guidelinesforspecificservices9. Guideline Nine: AccessibleGPsurgeries,healthcarecentresandprimarycarecentres 86 9.1 Planservicesforall 86 9.2 Yourpremises 87 9.3 Appointments,openinghours,waitingrooms 89 9.4 Waitingtobeseen 90 9.5 Fillingforms 91 9.6 Examinationandtreatment 91 9.7 Consent 92 9.8 Communicationwithpatientsandserviceusers 92 9.9 Information 95 9.10 Continuityofcare 95 9.11 Homevisits 96 9.12 Familymembersandcarers 96 9.13 Referral and sharing of information 97
10. Guideline Ten: Accessible hospital services, including out-patient departments 98 10.1 Ask,listen,learn,plan,do 98 10.2 Whototalktowhendevelopingthecareplan? 99 10.3 Identifyexistingcareprotocols 100 10.4 Prepareinadvance 100 10.5 Inthehospital 101 10.6 Dischargefromhospital-integrateddischargeplanning 105
11. Guideline Eleven:Accessibleemergencydepartments 106 11.1 Onarrival 106 11.2 Communication 108 11.3 Accessibilityrequirements 109 11.4 Waitingtobeseen 111 11.5 Familyorcarersupport 112 11.6 Assignedstaff 112 11.7 Explainmedicalproceduresclearlyandaccessibly 112 11.8 Integrateddischargeplanningfromtheemergencydepartment 113
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12. Guideline Twelve: Accessible maternity services 115 12.1 Introduction 115 12.2 Non-judgmental 116 12.3 Planningforspecificrequirements 116 12.4 Antenatalservices 122 12.5 Givingbirth 123 12.6 Careintheward 124 12.7 Post-natalcareandafterdischarge 125 12.8 Dischargeandfollow-up 126 12.9 Post-nataldepression 127 12.10Goodpracticeguidelinesforwomenwithspecificdisabilities 127
References 133
AdditionalUsefulResources 159
Appendix 1:Accessibilitychecklist 165 Appendix 2: Coreprinciplesofaqualityservice 166 Appendix 3:Disability-thenumbers 168 Appendix 4: MembershipoftheHSEUniversalAccessSteeringCommittee 173
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vi
Acknowledgements
Wewouldliketotakethisopportunitytothankallofthosewhogavetheirtimesogenerouslyindevelopingthisdocument.Wewouldliketoacknowledgeinparticularthehardwork,guidanceandpatienceofthemembersoftheHSEUniversalAccessSteeringCommitteeandallthosewhoseexpertiseandexperiencewascriticaltothedevelopmentofthisdocument.
Thanksalsotoallofthestaffandserviceuserswhomadesubmissionsduringtheconsultationphaseofthisworkandwhoweresignificantstakeholdersinthedevelopmentoftheseguidelines.
Wewouldalsoliketothankinadvanceallthosewhowill,inthecomingmonths,readandimplementtheguidelines.WehopethattheNational Guidelines on Accessible Health and Social Care Serviceswillbeausefulguideforstaffand,inturn,willmakearealdifferencetotheserviceuser’sexperienceofhealthandsocial care services in Ireland.
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Foreword
The Disability Act 2005isapositiveactionmeasure,whichprovidesastatutorybasisformakingpublicservicesaccessible.Itgiveseffecttotheunderlyingprinciplethatmainstreampublicservicesprovidedtothegeneralpublicmustalsoservepeoplewithdisabilitiesasanintegralpartoftheservicetheyprovide.
Thehealthserviceisobligedtoensurethatitsbuildings,itsservices,theinformationitprovides,andhowitcommunicateswithpeople,areallaccessibletopeoplewithdisabilities.TheseGuidelinesofferthepracticalguidancetomakethatareality.
Thisdocument,theNational Guidelines on Accessible Health and Social Care Services has been writtentogivepracticalguidancetoallhealthandsocialcarestaffabouthowtheycanprovideaccessibleservices.Whiletheseguidelinesrefertospecificdisabilities,ifwetakestepstoroutinelyprovideaccessibleservicesforall,wewillpositivelyinfluencetheexperienceofeverybodywhousesourservices.
TheethosofaccessibilityisreinforcedbyAFutureHealth,AStrategicFrameworkforReformoftheHealth Service 2012 - 2015,publishedbytheDepartmentofHealthinNovember2012;bylegislationsuchas the Disability Act 2005,theEqual Status Acts 2000 – 2008,bytheNational Healthcare Charter ‘You and Your Health Service’andthemanyotherhealthandsocialcarepoliciesandprocedures.
Theguidelinesdescribeastandardtowhichwecanaspire.Theydetailwhatobligationsareinstatutetoprovideaccessibleservices.Theyalsoserveasaresourceforhealthandsocialcareprofessionalswhomaybeplanningservicesinthefuture.
Manyofthekeyinitiativesoutlinedintheguidelinestomakeservicesmoreaccessiblearecostneutral.Consideration,compassionandopencommunicationarefree.Timespentidentifyingaperson’sneedsisaninvestmentinsafe,effectivecarewhichcanpreventunnecessaryriskstotheindividualandthestaffmember,andnegativefeedback.
Wehopethattheguidancewillhelpallstafftobuildontheirexistingknowledgeandtorecognisethatpeoplewithdisabilitiesareoftenexpertsinwhattheyneed.ThekeymessagereinforcedthroughouttheguidelinesisAsk,Listen,Learn,PlanandDo.
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WelookforwardtoservicesworkinginpartnershiptoensurethattheNational Guidelines on Accessible Health and Social Care ServicesmakeapositivedifferencetotheexperienceofallthosewhouseIreland’shealthandsocialcareservices.
Tony O’Brien Siobhan Barron Director General Director HealthServiceExecutive NationalDisabilityAuthority
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1. Introduction
1.1 Providing responsive care for service users
Itisimportantthathealthandsocialcareservicesprovideappropriateandresponsivecareforallserviceusers.Inthecourseoftheirlives,somepeoplewillhaveregularinteractionwiththehealthandsocialcareservices.Theymayhaveadisabilityoraprolongedillness,orbecauseofapre-existingconditionmaybemorevulnerabletootherillnesses.Manypeoplewhohavecontinuouscontactwithservicesdonotconsiderthemselvesill.
AnunderstandingoftheneedsofserviceuserswithdisabilitiesisimportantforeverypersonemployedorcontractedbytheHSE.1Thisunderstandingwillhelpensurethatpeoplewhoworkinthehealthandsocialcareservices,inwhatevercapacity:
• areequippedwiththeknowledgeandskillstoidentifyandwherepossiblemeettheneedsofpatientswithdisabilities
• designpremisesandsystemswiththoseneedsinmind • communicatewithserviceusersinwaysthatareappropriatetotheirneeds
1.2 Some key facts about disability in Ireland:
TheNationalDisabilitySurvey2006reportedthatbetweenoneinfiveandoneintenpersonshasalong-termdisability.Mostpeoplewillexperiencesomedegreeofdisabilityoverthecourseoftheirlife;however,aspeoplegetolder,theproportionofpeoplewithadisabilityrises.Basedonthefollowingstatistic,thenumberofpeoplewithadisabilitywillincreaseinthecomingyears:
“Eachyearthetotalnumberofpeopleovertheageof65yearsgrowsbyaround20,000personsandthepopulationover65yearswillmorethandoubletooveronemillionby2035.Peoplearelivinglonger–thoseagedover65yearsincreasedby14%since2006.”2
Disabilitymaybeclassifiedintoanumberofgroupings,forexample: • physicaldisability • sensorydisability–impairedsight,impairedhearing,orimpairedspeech • intellectualdisability • mental health conditions
1 TheHSEisintheprocessofreformandwilltransitionintoanewcommissioningagency.Theseguidelineswillbesubsumedbythisnewagency.2 HSEAnnualReportandFinancialStatements2012.www.hse.ie
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The NationalDisabilitySurvey2006showedthatthemostcommonformsofdisabilityinIrelandare,inorderoffrequency:
1. Difficultieswithmobilityordexterity 2. Pain 3. Mentalhealthdifficulties 4. Memorydifficulties 5. Breathingdifficulties 6. Hearingloss 7. Impairedvision 8. Intellectualdisability
Disabilitiesvaryintermsofthenatureanddegreeofdifficultyexperiencedforeachindividual.Somepeopleexperiencemorethanonekindofdisabilityatthesametime.Ingeneral,the numberofpeoplewithsomedegreeofimpairmentismuchlargerthanthenumberswithtotal loss of function.
We need to be aware that there are both visible and hidden disabilities • Visible disabilities:Sometimes,itisveryobviousthatapersonhasadisability,suchasablind
personwhousesawhitecaneorsomeonewhousesawheelchair • Hidden disabilities: Itisnotimmediatelyobviouswhensomeonehasahiddendisability.
Notallpeoplewhohaveavisualimpairmentneedawhitestickoruseaguidedog.Someone’sappearancewillnottellyouiftheyhaveepilepsy,oriftheyarelikelytogetpanicattacks
Extract from: NDA document “Providing public services to people with disabilities.
A Self-Study Guide” • ThemostcommontypesofdisabilityinIrelandaremobilitydisabilities • About184,000peoplehavedifficultywalkingmorethan15minutes • About31,000peopleuseawheelchair.Manymorepeople–about83,000–usewalkingaids,
or a stick • OthercommondisabilitiesinIrelandaredealingwithpain,difficultyrememberinginformation,
orhavingmentalhealthdifficulties • Somepeoplearebornwithadisability • Manymorepeopledealwithatemporarydisabilitybecauseofinjuriesorillness
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1.3. A range of solutions
Wherepossible,itisimportanttoofferarangeofsolutionsthatmeettheindividualneedsofpeoplewithdisabilities.Somethingthatworkswellforapersonwithapartiallossoffunctionmaynotbethebestsolutionforsomeonewithamoreseveredifficulty.Forexample,someonewhowalkswithdifficultymayfinditeasiertomanagestepsthanaramp,oncethereisahandrail,whileawheelchairuserwouldneedaramptonegotiateachangeinlevel.
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2. Purpose
2.1 Purpose of guidelines
The purpose of these guidelines is to: • assisthealthandsocialcareproviderstocomplywithlegalobligationsundertheEqual Status
Acts,theDisability Act 2005,theassociatedstatutoryCodeofPracticeonAccessibilityofPublicServicesandInformationprovidedbyPublicBodies,andhealthandsocialcarepolicyandprocedures
• assisthealthandsocialcareproviderstomeettheprinciplesoftheNational Healthcare Charter, You and Your Health Service
• assisthealthandsocialcareproviderstomeettheprovisionsoftheNational Standards for Safer Better Healthcare 2012 (HIQA)
• providearesourceforAccessOfficerstosupporthealthservicestaffrespond totheaccessrequirementsofpeoplewithdisabilitiesinallhealthandsocial care settings
• provideaguidancedocumentforuseineducationandtraininginrelationtodisability,accessibilityandcustomercare
• provideareferencemanualforallstaffinallhealthandsocialcaresettings
2.2 Structure of guidelines
Theguidelinesaredividedintotwosections–PartOneincludesguidelinesforuseinallhealthandsocialcaresettingsandPartTwoincludesguidelinesforspecificserviceareas.
Whileeachguidelinecanbeusedasastand-alonedocument,agreaterunderstandingcanbeachievedbyreadingalloftheguidelinedocuments.
Part One: Guidelines for all health and social care settings
Guideline One: Developingaccessiblehealthandsocialcareservices Guideline Two:Developingdisabilitycompetence Guideline Three: Accessible services - general advice Guideline Four: Communication Guideline Five: Accessible information Guideline Six: Accessible buildings and facilities Guideline Seven: Consent Guideline Eight: Roleoffamilymembersandsupportpersons
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PartTwo:Guidelinesforspecificservices Guideline Nine: AccessibleGPsurgeries,healthcarecentresandprimarycarecentres Guideline Ten: AccessibleHospitalServices Guideline Eleven:AccessibleEmergencyDepartments Guideline Twelve:Accessiblematernityservices
The guidelines contain links to further information and resources, as well as contact details for disability organisations.
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3. Scope
These Guidelines were developed in a partnership between the National Disability Authority and the Health Service Executive, and with input from an Advisory Group, drawing on:
• research evidence • focusgroupsandinterviewswithpeoplewithdisabilitiesandtheirorganisations • feedback on drafts
Abackgroundpaper,commissionedbytheNDA,setsoutthematerialthatunderpinsthisguidance.Thispapersummarisesresearchfindings,reviewsotherguidanceonhealthservicesanddisability,andconsidersthepointsraisedintheconsultationwithIrishdisabilityorganisations.
TheGuidelinesareavailableinpaperandelectronicformat,andhavelinkstoothersourcesofguidanceandinformation–seeResourcessection.
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4. Legislation and related policies, procedure and guidelines
4.1 Overview of legislation and other related healthcare policy
Itisalegalrequirementtoprovideaccessiblehealthandsocialservicesforserviceusers.Thefollowingsection,whilenotexhaustive,setsoutthekeypiecesoflegislationandpolicywhichareimportantinprovidingaccessibleservicesforpeoplewithdisabilities.
The National Guidelines on Accessible Health and Social Care Servicesarewrittento
complementexistingpolicies,proceduresandlegislationgoverninghealthandsocialcareinIreland.TheguidelinesdonotreplaceotherpoliciesoftheHSEorindeedcontraveneexistinglegislationinanyway.
TheseguidelinesshouldbereadinconjunctionwithothergoverningdocumentsoftheHSEandthelegislationsothatstaffcanprovidethebestpossibleservicetoallpatientsandserviceusersofhealthandsocialcareservices.Mattersappropriatetootherprocedureswillcontinuetobetreatedinthesamemannerandinaccordancewiththeseagreedprocedures.
Examplesofrelevantdocumentsinclude:National Consent Policy; National Healthcare Charter; Equal Status Acts 2000 – 2008; Integrated Care Guidance: A practical guide to discharge and transfer from hospital; Your Service Your Say – Policy and Procedure for the Management of Consumer Feedback to include Comments, Compliments and Complaints; On Speaking Terms;theMedicalCouncilGuidetoProfessionalConductandEthicsforRegisteredMedicalPractitioners; the Disability Act 2005 and the Health Act 2004.
The National Guidelines on Accessible Health and Social Care Serviceswillbereviewedatregularintervalstoensurethatthecontentofthedocumentisinlinewithnewpolicychangesordevelopmentsinhealthcare.
Thefollowingaresomeofthekeydocumentsforyourinformation.
4.2 The National Healthcare Charter, You and Your Health Service
The National Healthcare Charter, You and Your Health ServicewasdevelopedfollowingwideconsultationwithandinputfromtheIrishpublic,serviceusers,staff,thevoluntaryandstatutorysector,patientadvocacygroupsandindividualadvocates,themanagementteamoftheHSE,theDepartmentofHealth,theHealthServicesNationalPartnershipForumandregulatorybodies.
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Theresultofthisconsultationisacharterdocumentwhichsetsouteightprinciplesofexpectationandresponsibilitywhichunderpinhighquality,people-centredcare.Thefirstprincipleofthecharter“Access”setsoutourcommitmenttoprovidehealthandsocialcareserviceswhichareorganisedtoensureequityofaccesstoallwhousethem.Thecharteralsoclearlyacknowledgesthatpatientsandserviceusershaveresponsibilitiestomeetsothattheyareactiveparticipantsintheircare.
4.3 FutureHealth,AStrategicFrameworkforReformoftheHealthService 2012 – 2015
Future Healthwillallowthehealthandsocialcareservicestomovetowardsanewintegratedmodelofcarethattreatspatientsatthelowestlevelofcomplexitythatissafe,timely,efficient andasclosetohomeaspossible.Inprovidingaccessiblecare,asoutlinedintheseguidelines,serviceswillsupportthegoalsofFuture Healthtoprovidecarethatispreventative,plannedandwell-coordinated.
Extractfrom:FutureHealth,AStrategicFrameworkforReformoftheHealthService 2012 – 2015
Keeping People Healthy:Thesystemshouldpromotehealthandwellbeingbyworking acrosssectorstocreatetheconditionswhichsupportgoodhealth,onequalterms,forthe entirepopulation.
Patient-centredness: Thesystemshouldberesponsivetopatientneeds,providingtimely,proactive,continuouscarewhichtakesaccount,wherepossible,oftheindividual’sneeds andpreferences.
Lack of Integration:“Weneedmuchbetterintegrateddeliverysystemsbasedonmulti-disciplinarycare.Thiswillreducecostsandimprovequality.”
“Achievingintegratedcaremeansthatservicesmustbeplannedanddeliveredwiththepatient’sneedsandwishesastheorganisingprinciple.Itispreferablethatthetermintegratedcareratherthan“integration”beusedsothatitisclearthatthefocusiswhereitshouldbei.e.onpatientsandfamiliesandtheservicestheyneedratherthanonfundingsystems,organisationorprofessionals.Eachofthesewillbeimportantleversinenablingandfacilitatingintegratedcare–buttheyinthemselvesarenottheobjectives.”
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Inpracticalterms,thismeansthatservicesmustrecognisethatpeoplewithdisabilitieshaveadegreeofexpertiseintheownrequirementsandthat,bytheapplyingtheguidelines“Ask,Listen,Learn,Plan,Do”,servicescanprovidemoreintegratedcare.(SeeGuidelineOne:DevelopingAccessibleHealthandSocialCareServicesformoreinformation).
Differenthealthservicesettingsorspecialtiesshouldnotoperateasindividualsilosunlessthereisgoodreason.Liaisonbetweenprofessionalsisimportanttoidentifytheservicesneededforindividualsandtoenableprofessionalstodeliverintegratedcarethatiscentredontheindividualandtheirneeds.Thisshouldhappeninwhateversettingthoseneedsaremetfromtimetotime.Forexample,whereappropriate:
• Teamsworkinginprimary,specialist,rehabilitationandhospitalcarecansharetheirknowledgeandexperiencesothatperson-centredcarebecomesthenorm
• Thosetreatinggeneralillnessescanliaisewiththoseprovidingspecialistcareorsupportfortheunderlyingdisability;and
• Hospitalscanputinplacedischargeplanningandfollow-upwiththeperson’sGPandspecialistdisabilitysupport,toensurecontinuityofcareandsupportondischarge.Thisisessential,especiallyforthosewithasevereandprolongeddisability
4.4 Integrated Care Guidance: A practical guide to discharge and transfer from hospital
Professionals should refer to the Integrated Care Guidance: A practical guide to discharge and transfer from hospital.3
4.5 The Equal Status Acts 2000 – 2008
The Equal Status Acts 2000 - 2008 4applytoallservicesinthepublic,voluntaryandprivatesectors.TheseActsmakediscriminationongroundsofdisabilityillegal.
TheActsalsorequirereasonableaccommodationsofpeoplewithdisabilitiesandallowabroadrangeofpositiveactionmeasures.Servicesandpremisesmustreasonablyaccommodatesomeonewithadisability.However,theyarenotobligedtoprovidespecialfacilitiesortreatmentwhenthiscostsmorethanwhatiscalledanominalcost.Whatamountstonominalcostwilldependonthecircumstances,suchasthesizeandresourcesofthebodyinvolved.
3 Thispracticalguidetointegratedcareisdesignedtosupporthealthcareproviderstoimprovetheirdischargeandtransferprocessesfromtheacutehospitalsettingbackintothecommunityandthereby,supportthedeliveryofhighqualitysafecare.TheNationalIntegratedCareGuidancehasbeendevelopedbytheNationalIntegratedCareAdvisoryGroupundertheauspicesoftheQualityandPatientSafetyDivision.http://www.hse.ie/eng/about/Who/qualityandpatientsafety/safepatientcare/integratedcareguidance/IntegratedCareGuidancetodischargefulldoc.pdf
4 TheEqualStatusActs2000–2008promoteequality,makessexualharassmentandharassment,victimisationandcertainkindsofdiscrimination(withsomeexemptions)acrossninegroundsillegal.Oneofthesegroundsisdisability.
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Thedefinitionofdisabilitycoversthebroadrangeandkindsofdisability,andisnotlimitedtopeoplewithmoreseriousdifficulties.Itisbroadlydefined,includingpeoplewithphysical,intellectual,learning,cognitiveoremotionaldisabilitiesandarangeofmedicalconditions.FurtherinformationontheEqualStatusActs2000–2008isavailablefromtheEqualityAuthorityhttp://www.equality.ie/en/Publications/Information-Publications/Your-Equal-Status-Rights-Explained.html.
4.6 Part3,DisabilityAct2005
Part 3, Disability Act 2005(AccesstoBuildingsandServicesandSectoralPlans)coversthepublicsector,anditsfocusisonthosewhoexperiencemoresignificantdifficulties.5Itsetsoutwhatpublicbodiesmustdowherethisispracticableandappropriate,asfollows:
• Mainstreamservicesmustincludepeoplewithdisabilities • Whereapersonwithadisabilityrequestsit,theymustbegivenassistancetouseaservice • Publicservices,incommunicatingwithpeoplewithdisabilities,mustuseappropriateformsof
communicationwhencommunicatingwithpeople;forexample,withpeoplewhohaveproblemswithvision,problemswithhearing,orthosewhohaveanintellectualdisability
• Publicareasmustmeetminimumstandardsofaccessibility.Byend2015,theymustmeetthestandardssetoutinPartMoftheBuildingRegulations2000and,byJanuary12022,theymustmeetthestandardssetoutinPartMoftheBuildingRegulations2010;and
• Thegoodsandservicesprocuredmustbeaccessibletopeoplewithdisabilities Underthelegislation,asapublicbody,thehealthservicemusthaveatleastoneAccessOfficerto
provideorarrangetheprovisionofassistanceandguidanceforpeoplewithdisabilitieswhentheyare accessing its services.
TheHealthServiceExecutivehasaNationalComplaintsOfficer(referredtoasanInquiryOfficerintheact)whodealswithappealsandcomplaintsaboutfailuretoprovideaccessibleservices,premises,informationorcommunication.ThereisafurtheravenueofappealtotheOmbudsman.
4.7 National Disability Authority Code of Practice and Guidance
ThereisastatutoryCode of Practice on Accessibility of Public Services and Information provided by Public Bodies6whichgivesguidanceonhowtocomplywiththeDisabilityActrequirements.CompliancewiththeCodeofPracticeistakenascompliancewiththeAct.
5 Thelegaldefinitionofdisabilityinrelationtoapersonmeans“asubstantialrestrictioninthecapacityofthatpersontocarryonaprofession,businessoroccupationintheStateortoparticipateinsocialorculturallifeintheStatebyreasonofanenduringphysical,sensory,mentalhealthorintellectualimpairment”
6 http://www.nda.ie/Website/NDA/CntMgmtNew.nsf/0/3DB134DF72E1846A8025710F0040BF3D/OpenDocument
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Forfurtherinformation,seetheGuidetotheDisability Act 2005 (http://www.justice.ie/en/JELR/Pages/Guide_to_Disability_Act_2005).
TheNationalDisabilityAuthority’saccessibilitytoolkit(http://accessibility.ie)containsgeneralinformationonhowtomakeservices,buildings,informationandwebsitesmoreaccessibletopeoplewithdisabilities.Thiswebsiteisupdatedregularly.
4.8 National Consent Policy
Extract from the National Consent Policy: “Consentisthegivingofpermissionoragreementforanintervention,receiptoruseofa
serviceorparticipationinresearchfollowingaprocessofcommunicationinwhichtheserviceuserhasreceivedsufficientinformationtoenablehim/hertounderstandthenature,potentialrisksandbenefitsoftheproposedinterventionorservice.”7
TheneedforconsentextendstoallinterventionsconductedbyoronbehalfoftheHSEonserviceusersinalllocations.Theethicalrationalebehindtheimportanceofconsentistheneedtorespecttheserviceuser’srighttoself-determination(orautonomy)–theirrighttocontroltheirownlifeandtodecidewhathappenstotheirownbody.
Itincludessocial,aswell,ashealthcareinterventionsandappliestothosereceivingcareand
treatmentinhospitals,inthecommunityandinresidentialcaresettings.Howtheprinciplesareapplied,suchas,theamountofinformationprovidedandthedegreeofdiscussionneededtoobtainvalidconsent,willvarywiththeparticularsituation.Exceptinemergencysituations,aninterpreterproficientintheserviceuser’slanguageisrequiredtofacilitatetheserviceuseringivingconsentforinterventionsthatmayhaveasignificantimpactonhisorherhealthandwell‐being.Wherepracticable,thisisbestachievedinmostcasesbyusingaprofessionalinterpreter.
Knowledgeoftheimportanceofobtainingconsentisexpectedofallstaffemployedorcontractedbyhealthandsocialcareservices.Toensurethattheyareawareoftheirobligationswhenseekingconsentandforguidanceonobtainingvalidconsentfrompeoplewithdisabilities,staffshouldreadthe National Consent Policy.
7 NationalConsentAdvisoryGroup,HSE.NationalConsentPolicy.May2013HSE
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4.9 The National Emergency Medicine Programme Professionals should refer to The National Emergency Medicine Programme – A strategy to
improve safety, quality, access and value in Emergency Medicine in Ireland. This document giveshelpfuladvicespecifictotheEmergencyMedicineprogrammerelevanttoaccessibility.
4.10 Other
The UNConventionontheRightsofPersonswithDisabilities(CRPD),whichwasadoptedon13December2006andsignedbytheIrishGovernmentinDecember2007,hasnotyetbeenratified.Thisandemerginglegislation,suchastheAssisted Decision Making (Capacity) Bill and the HealthInformationBill,mayimpactonthecontentofguidelinesandrequirethemtobereviewedattheappropriatetime.
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5. Glossary of Terms / Definitions
5.1 Glossary
IntheseGuidelines,theterm‘accessible’meansuser-friendlyforpeoplewithdisabilities.
Accessible building Anaccessiblebuildingisonethatpeoplewithdisabilitiescanreadilyenter,movearound,use
comfortablyandexitsafely.
Accessible communication Accessiblecommunicationmeanscommunicatingwithpeoplewithdisabilitiesinwaystheycan
readilyfollow.
Accessible information Accessibleinformationmeansthatpeoplewithdisabilitiescanreadilyaccessandunderstandit.
Accessible service Anaccessibleserviceisonewhichisgearedtoservepeoplewithdisabilitiesalongsideother service users.
Disability Thelegaldefinitionofdisability,assetoutintheDisabilityAct2005,usedinrelationtoaperson
means“asubstantialrestrictioninthecapacityofthatpersontocarryonaprofession,businessoroccupationintheStateortoparticipateinsocialorculturallifeintheStatebyreasonofanenduringphysical,sensory,mentalhealthorintellectualimpairment”
Easy to read EasytoReadisthetermforverysimplifiedtextwithpictures,whichisimportantforpeoplewith
literacyproblemsorlimitedEnglish.
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Health and Social Care Professional Healthandsocialcareprofessionalisgenerallyusedasanumbrellatermtocoverallthevarious
healthandsocialcarestaffwhohaveadesignatedresponsibilityandauthoritytoobtainconsentfromserviceuserspriortoanintervention.Theseincludedoctors,dentists,psychologists,nurses,alliedhealthprofessionals,socialworkers.
Plain English Awayofpresentinginformationthathelpssomeoneunderstanditthefirsttimetheyreadorhearit.
Service user Weusetheterm‘serviceuser’toinclude: • Peoplewhousehealthandsocialcareservicesaspatients • Carers,parentsandguardians • Organisationsandcommunitiesthatrepresenttheinterestsofpeoplewhousehealthandsocial
careservices;and • Membersofthepublicandcommunitieswhoarepotentialusersofhealthservicesandsocial
care interventions
Theterm‘serviceuser’alsotakesaccountoftherichdiversityofpeopleinoursociety,whetherdefinedbyage,colour,race,ethnicityornationality,religion,disability,genderorsexualorientation,andwhomayhavedifferentneedsandconcerns.
Weusetheterm‘serviceuser’ingeneral,butoccasionallyusetheterm‘patient’whereitis mostappropriate.
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5.2 Appropriate Terms to Use
Whenwritingorspeakingaboutpeoplewithdisabilities,itisimportanttoputthepersonfirst.Catch-allphrases,suchas‘theblind’,‘theDeaf’or‘thedisabled’,donotreflecttheindividuality,equalityordignityofpeoplewithdisabilities.
Listedbelowaresomerecommendationsforusewhendescribing,speakingorwritingaboutpeoplewithdisabilities.
Some examples of appropriate terms:
Term no longer in use: Term Now Used: thedisabled peoplewithdisabilitiesordisabledpeople wheelchair-bound personwhousesawheelchair confinedtoawheelchair wheelchairuser cripple,spastic,victim disabledperson,personwithadisability thehandicapped disabledperson,personwithadisability mentalhandicap intellectualdisability mentallyhandicapped intellectuallydisabled normal non-disabled schizo,mad personwithamentalhealthdisability suffersfrom(forexample,asthma) has(forexample,asthma)
ReproducedfromtheNDA Guidelines on Consultation Source: Making Progress Together, 2000 - People with Disabilities in Ireland Ltd.
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NATIONAL GUIDELINESAccessible Health and Social Care Services
5.3 Abbreviations
ASL AmericanSignLanguage BSL BritishSignLanguage CD CompactDisc DCSP DirectorateofClinicalStrategyandProgrammes DHSSPS DepartmentofHealth,SocialServicesand
PublicSafety
DVD Digital Versatile Disc ECN EmergencyCareNetwork ED EmergencyDepartment EDD Estimated Date of Discharge EDIS EmergencyDepartmentInformationSystems ELOS EstimatedLengthofStay EM EmergencyMedicine EMA EmergencyMultilingualAids EMP EmergencyMedicineProgramme GAIN GuidelinesandAuditImplementationNetwork GP General Practitioner HIQA HealthInformationandQualityAuthority HSE HealthServiceExecutive IRIS IrishRemoteInterpretingService ISL IrishSignLanguage IT InformationTechnology LIU LocalInjuryUnit MRI MagneticResonanceImaging MRSA Methicillin-resistantStaphylococcusaureus NALA NationalAdultLiteracyAgency NCBI National Council for the Blind of Ireland NDCS NationalDeafChildren’sSociety NDA NationalDisabilityAuthority NECS NationalEmergencyCareSystem NHS National Health Service NICE National Institute for Health and Clinical
Excellence
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NPSA NationalPatientSafetyAgency PA Personal Assistant PDD Patient Discharge Data PHN Public Health Nurse PPG Policy,ProcedureorGuideline SCIE SocialCareInstituteforExcellence SDU SpecialDeliveryUnit SLIS SignLanguageInterpretingService UK UnitedKingdom UN UnitedNations US UnitedStates UNCRPD UnitedNationsConventionontheRightsof
PersonswithDisabilities WC WaterCloset
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NATIONAL GUIDELINESAccessible Health and Social Care Services
6.1 AllStaff
Eachmemberofstaffworkinginhealthandsocialcareserviceshasaresponsibility,relevanttotheirownrole,toensurethatservicesareaccessibletopeoplewithdisabilities,andthattheirinteractionsandcommunicationwithpeoplewithdisabilitiesareappropriate,respectful,andaredeliveredinwaysthatpeoplewithdisabilitiescanreceiveandunderstand.
Medical,nursing,andotherprofessionalandtherapystaffhavearesponsibilitytolistenandtocommunicateappropriately,andtotakeaccountofconcurrentissuesinrelationtotheperson’sdisabilityintheirtreatmentprogrammes.
Receptionistsandadministrativestaffhavearesponsibilitytoensurethatpeoplewithdisabilitiesareinformedofappointmentsandarecalledfortheirturninwaysthatcanbereceivedandunderstood.
Careassistants,porters,cateringandcleaningstaffwhointeractwithpatientsandserviceusersinthecourseoftheirworkhavearesponsibilitytocommunicateinwaysthatcanbeunderstood.
Maintenanceandcleaningstaffmaymaintainaccessibilityofbuildingsandfacilitiesbyensuringthattherearenoobstructionswhichcouldhinderaccessibilityorcauseahazard.
Frontlinestaffshouldseektoresolve,atalltimes,concernsandqueriesfrompatientsandserviceusersatthefirstpointofcontactwiththepatient/serviceuserand/ortheiradvocate.Wherethisisnotpossible,theyshouldseekadvicefromtherelevantlinemanagerorfromaspecialistdisabilityorganisation,dependingontheissue.Iftheissuecannotberesolvedatthislevel,furtheradvicecanbesoughtfromtheAccessOfficer.
6.2 Seniormanagementrole
Seniormanagershavearesponsibilitytosupportandpromotetheprovisionofaccessibleservicesforallserviceusers.Allhealthandsocialcaremanagementshouldaimtoensurethatthecapacityoftheserviceisdevelopedtofullysupportpeoplewithdisabilitiesinmainstreamhealthservices.Thefollowingarekeytasks/responsibilitiesforseniormanagers: Tocomplywithallpolicies,proceduresandlegalobligations:
• EnsurecompliancewithlegalresponsibilitiesundertheEqual Status Acts 2000 – 2008 and the Disability Act 2005.
6. Roles and Responsibilities
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Toprovideleadershiptootherstaff: • Setoutrolesandresponsibilities • Ensureallotherstaffaccessappropriatedisabilitytraining • Ensureaccessofficer(s)areinplaceandarereleasedforandhaveaccessedappropriatetraining;
and • EnsurethatstaffareawareoftheNationalHealthcareCharterandthe8principlesof
Access,DignityandRespect,SafeandEffectiveServices,CommunicationandInformation, Participation,Privacy,ImprovingHealth,Accountability,theavailabilityoftheseguidelines andotherrelevantpolicies
Toensurethatallmainstreamserviceplanning,servicedeliveryorperformanceevaluationsystemsaredevelopedsothatservicesareaccessibleforallserviceusersandsupportcompliancewiththerelevantpolicies,procedures,guidelinesandlegislation:
• Integrateaccessibilityintoserviceplanningineachservice;forexample: – Build-insystemstoensuretheindividual’sneedsareco-ordinatedacrossdifferentlevelsor
centres of care – Developpatientandserviceuserinformationsystemsthatensurethattheaccessibility
requirementsofserviceusersandinformationonmanaginganypre-existingconditionscanfollowthroughtheirpatientjourneyacrossdifferenthealthservices
• Ensurethatdeliveringonaccessibilityrequirementsisbuiltintosystemsformanagingandmonitoringperformanceofstaffanddepartments;and
• Budgettomeetaccessibilitycommitments
Toensurethat,aspartoftheregularplanningcycle,seniormanagerssetgoalsandclearprioritieswhichwillallowthemtomeetlegalrequirementsandenhanceaccessibility:
• Setgoalsandclearprioritiesforachievingaccessibility • Setkeyperformanceindicatorsorcomplywiththeprovisionofdataforexistingnational
performanceindicatorsonaccessibility • Ensuretherearepoliciesand/orprotocolsthatsetouthowaccessibilityistobeachievedin
eachlocalarea;and • Putinplaceasystemforreportingandreviewingwhathasbeenachievedandforplanningand
agreeingthenextsteps
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NATIONAL GUIDELINESAccessible Health and Social Care Services
6.3 AccessOfficerrole
TheappointmentofAccessOfficersisalegalobligationunderPart3oftheDisability Act 2005. TheActrequiresthatAccessOfficersbeappointedtoallsiteswherethegeneralpublicusehealthandsocialservices.TheActalsoextendstoorganisationsthathaveaserviceagreementwith theHSE;forexample,thoseorganisationsthatarefundedunderSection38and39oftheHealth Act 2004.
Section26(2)oftheDisability Act 2005 requireshealthandsocialcareservicestoauthoriseatleastonememberofstafftoactasan‘AccessOfficer’,toprovideorarrangeforandco-ordinatetheprovisionofassistanceandguidancetopersonswithdisabilitiesinaccessingitsservices.Pleasenote,thisisnotspecificallytheroleofstafffromDisabilityServices,andstafffromanybackgroundshould be considered.
GiventhattheHSEprovideshealthandsocialcareservicesinhundredsoflocationsthroughout
thecountry,accessofficersarenecessarywherethereareserviceusers,patientsandclients;forexample,hospitals,primarycarecentres,healthandsocialcareclinicsand/orlocationswherehealth and social care is delivered.
Theroleisnotlimitedtophysicalaccess,suchascarparking,rampsorwheelchairaccess,butextendstoallaspectsofthepatient/serviceuserjourneyincludingtheprovisionofaccessibleinformation,consultationsandprocedures,appointmentsandapplicationsforserviceprovision.
Itisthedutyandroleofallhealthandsocialcareprofessionalsatalllevelstoattendtothe accessneedsofpeoplewithdisabilities.AccessOfficerswillnotreplacethisduty.Rather,AccessOfficerswillprovideadditionalsupporttofrontlineservicestoattendtotheaccessneedsofpeoplewithdisabilities.
Mostaccessanddisabilityissuesarealreadybeingmanagedeffectivelybyfrontlineservicesonaday-to-daybasis.Thisrolewillnottakefromthisexistingpractice.Ininstanceswhereanissuecannotbedealtwithlocally,thismattercanbereferredtotheNationalSpecialistinAccessibilityforfurthersupport.TheHSEappointedaNationalSpecialistinAccessibilityin2010whoseroleistoprovideguidance,adviceandstrategicsupportinthepromotionofaccesstomainstreamhealthservicesforpeoplewithdisabilities.
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Peoplewithdisabilitiesfacemanybarriersinaccessinghealthandsocialcareservices.Someofthesebarriersareowingtoapoorphysicalenvironment.However,mostoftheexistingbarriersareowingtoalackofunderstandingofhowtoaccommodateaperson’sdisability.AccessOfficerswillplayakeyroleinsupportingtheorganisationtoaddresssomeofthesebarriersand,indoingso,inensuringgreateraccessibilityforpeoplewithdisabilities.Theroleisdesignedtosupporthealthservicestaffrespondtotheaccessrequirementsofpeoplewithdisabilitiesinallhealthandsocialcaresettings.Accessofficerswillbeprovidedwithon-goingcomprehensivetraining,informationandresourcesmaterialstoenablethemcarryoutthisrole.
TheroleofanAccessOfficerinhealthandsocialcareservicesistosupporthealthservicestafftorespondtotheaccessrequirementsofpeoplewithdisabilitiesinallhealthandsocialcaresettings.ThemaindutiesofanAccessOfficerareto:
• Respondtoanddealwithrequestsfromhealthservicestaffforassistanceregardingaccessissueswheresuchrequestshavenotbeendealtwithorcannotbemanagedatthefirstpoint of contact
• Advisehealthservicestaffontheprovisionofinformationinanaccessibleformat • Developprotocolsforrespondingtospecificrequestsforassistanceanddocumenthowsuch
assistance can be sourced • Disseminateinformationonbestpracticeregardingaccessibility • Liaisewithrelevantdisabilityorganisationsifnecessaryand/orsupportfrontlineservicestodo
soasappropriate • Logandappropriatelyrecordresponsestorequestsandqueries • Promoteawarenessoftheroleofaccessofficerasappropriate • LiaisewiththeNationalSpecialistinAccessibilityand ItisnottheroleofanAccessOfficerto: • Provideone-to-oneadvocacyforpeoplewithdisabilities • Relievefrontlinestaffoftheiraccessresponsibilitiestopatients/clients/serviceusers • Beaonestopshoponallmattersofdisability;and • Dealwithcomplaints(theseshouldbedirectedthroughYour Service, Your Say).Iftheissue
cannotberesolvedorthepatient/serviceuserisnotsatisfiedwithhowtheissuehasbeendealtwith,s/hecanreferthemattertotheHSEcomplaintssystem,‘Your Service, Your Say’ormayrefertheissueonwardstotheOfficeoftheOmbudsmanortheOfficefortheOmbudsmanforChildren.Furtherdetailsof‘YourService,YourSay’areavailableonwww.hse.ie
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Title
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NATIONAL GUIDELINESAccessible Health and Social Care Services
25
Part One
Guidelines for all Health and Social Care Settings
Theguidelinesdescribeastandardwhichwecanaspireto.Theyarewrittenintheknowledgethatservicesmaynothavefinancialresourcestoimplementallmeasuresoutlined;however,thereisanobligationonindividualstoensurethattheyknowwhatisrequiredofthembylaw.Theyalsoserveasaresourceforhealthandsocialcareprofessionalswhomaybeplanningservicesinthefuture.
Manyofthekeyinitiativesyoucantaketomakeservicesmoreaccessiblearecostneutral.Consideration,compassionandopencommunicationarefree.Timespentidentifyingaperson’sneedsisaninvestmentinsafe,effectivecarewhichcanpreventunnecessaryriskstotheindividualandthestaffmember.
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Developing accessible health and social care services 1.1 Ask, Listen, Learn, Plan, Do
Mainstreamsystemsandpracticesshouldbedesignedtoensurethattheyareaccessibleforallservicesusers.Whendevelopingaccessibleservices,thefollowingapproachmaybeofassistancetoyou:Ask,Listen,Learn,Plan,Do.Figure1isacirculardiagramwhichisavisualrepresentationoftheAsk,Listen,Learn,Plan,Doprocess.Italsodemonstratesthecyclicalorrecurringnatureofthisprocess.
Ask Listen
Learn
Plan
Do
Fig. 1: Developing
accessible services
1. Guideline One
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NATIONAL GUIDELINESAccessible Health and Social Care Services
Ask
Consultwithindividuals,advocates,disabilityorganisationsandstaffworkingcloselywithindividualstoidentifypatientandserviceuserneedsinyourarea.8
• Asksimplequestionstofindoutifserviceusershaveanyspecificrequirementsthatmustbeaccommodated;forexample,“Isthereanythingwecandotoassistyou?”
• Becomeawareofwhatcouldconstituteobstaclesordifficultiesforpeoplewithdisabilitiesusingyourservices
• Withtheconsentofthepersonwithadisability,familymembers,carersorsupportworkersmayalsobeabletoguideonanyspecificneeds
Listen
Recognisethatpeoplewithdisabilitiesandstaff,familymembers,personalassistants,advocatesanddisabilityorganisationsworkingcloselywithindividualsareoftenexpertsinpatientandserviceuser needs.
• Listenattentivelytotheirfeedback • Listentoanysuggestionsmadeforaddressingtheirrequirements
Learn
Ensurethatyouhavesufficientinformationtohelpyoutoimproveserviceprovision. • Completeanynecessaryresearchsothatyoucanlearnabouttherequirementsofindividuals • Readtherelevantpolicies,procedures,guidelinesandlegislation
8 TheNationalAdvocacyUnitprovidesguidanceonserviceuserinvolvementandparticipation.
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Plan
Whileitwillnotalwaysbepossibletomeetpatientorserviceuserrequirements,healthandsocialcareservicescanstrivetounderstandserviceuserneedsand,wherereasonable,practicalandappropriate,theycanmakepositivechangestohowservicesareprovided.Whereappropriate:
• Setoutaprogrammeofactiontoaddressidentifiedissues • Developaplaninconsultationwithrelevantpeopletosupportyoutomaketheservicesyou
providemoreaccessible • Setoutclearprotocolsandguidanceforstaff • Buildincoordinationacrossdifferentlevelsofcare • Setoutrolesandresponsibilities • Establishandembedpolicies
Do
Adoptpoliciesandprotocolsthat: – setoutthestandardstepstofollowtoachieveaccessibleservices;and – integrateaccessibilityintoyourgeneralprotocolsforserviceprovision • Implementtheadoptedpoliciesandprotocols • Provideclearleadership • Provide training and mentoring • Establishsystemstomonitorandreviewdeliveryinpractice • Offerafeedbackandcomplaintsmechanism • Ensurefeedbackinformsreviewofpoliciesandpractices • Afteraperiodoftimeitwillbenecessarytobeginthecycleagain
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NATIONAL GUIDELINESAccessible Health and Social Care Services
1.2 Examplesofpolicies,proceduresorguidelinesforstaff
Whenanagreedstandardpolicy,procedureorguideline(PPG)isinplaceandimplemented,staffareawareofwhattheycandolocallytomakeservicesmoreaccessible.PleasenotethattheHSEPPGs are available on the intranet site.
Examplesofpolicies,proceduresorguidelines(PPGs)whichareadvisableforservices,orwheretherearepre-existingnationalhealthandsocialcareservicePPGswhichstaffshouldadoptandapplylocally,aredetailedbelow:
• Identifyingaperson’saccessibilityrequirements • Reviewingpre-admissionplanning,in-patientcareanddischargeplanningtoensurethatthey
areaccessible(SeeIntegrated Care Guidance: A practical guide to discharge and transfer from hospital)
• Co-ordinationofcareacrossGeneralPractice(GP)andhospitalservicesandliaisonwiththeteamdealingwiththeperson’sprimarydisability,whereappropriate,andmaintainingconfidentialityasisrequireddependentonthecase
• Patientconsent(SeeNational Consent Policy)anddecision-making • Evacuationinanemergencyfromhealthorsocialcaresettings • Ensuringthatbuildingsarewell-maintained,thatallaccessibilityfeaturesareoperatingcorrectly • Ensuringthattherearenoobstructionswhichcouldhinderaccessibilityorcauseahazard
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Developing disability competence 2.1 Buildingcapacityandunderstandingforallstaff
Allhealthandsocialcarestaffshoulddisplayapositiveattitudetowardsserviceusers.Appropriatetrainingiskeytoensuringthatstaff:
• areawareofthepatientandserviceusersneedsintheareaofaccessibilityandspecificaccessibilityconcernsforpeoplewithdisabilities,and
• developthecompetenceandconfidencetoaddresstheseeffectively
Peoplewithdisabilitiescanfacearangeofaccessibilityproblemsorbarriers.Forexample: • buildings • transport • equipment • failuretocommunicateinappropriateways • lack of accessible information • attitudes • ignorance • discrimination
Disabilitytrainingcanhelpstaffrecognisethesebarriersandlearnpracticalwaysinwhichtheycanbe addressed.
Localmanagersshouldfacilitatecapacitybuildingforstaff.Thiscanbedonebyarrangingawarenesstrainingwhichincludesgeneralmaterialonaccessibleservicesandcommunication,aswellastailoredtrainingrelatingtothespecificroleandsetting.
2. Guideline Two
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NATIONAL GUIDELINESAccessible Health and Social Care Services
2.2 Online training resource
TheNationalDisabilityAuthority’sDisabilityEqualityTraininge-learningisavailableonlineat elearning.nda.ie,andalsoonHSELand.ie,theHSE’sonlineresourceforLearningandDevelopment(www.hseland.ie)under“PersonalDevelopment”.Thiscourseisfreeofcharge;ittakesaboutanhourandahalftocompleteandprovidesageneralintroductiontocustomerserviceforpeoplewithdisabilities.
2.3 Tailored disability training
Insomeinstances,itcanbehelpfultohavetrainingwhichistailoredtoinformparticipantsaboutaparticulardisability.Forexample,DeafawarenesstrainingcanexplorecommunicatingwithDeafpeopleinmoredepth.
2.4 Professional education, training and professional standards
Professionaleducationandtrainingandcontinuousprofessionaldevelopmentofhealthandsocialcarepersonnelshouldroutinelyincludetrainingonaccessibilityasanintrinsicpartof their curriculum.
Medical,nursingandtherapyschools,professionaltrainingbodies,suchasthecollegesofprofessionalspecialties,andregulatorybodies,suchastheIrishMedicalCouncil,havearoletoplayinthisregard.Standardssetbyprofessionalbodiesshouldmakeprovisionforaccessibilityissues.
Staffprovidinggeneralhealthandsocialcareneedtoreceiveappropriatetrainingtoallowthemtocompetentlysupportpatientsandserviceuserspresentingfortreatmentofmedicalconditionsotherthantheirdisability.
Clinical,nursingandalliedhealthprofessionalsshouldreceivetraininginmanagingtheinterplayofdifferentmedicalconditionsand,inparticular,whereaperson’sdisabilitymayimpactontheircareplan;forexample,howtocarefor:
• Apatientwithaspinalinjurywhentheyareinhospitalwithanunrelatedcondition,astheymayneedadditionalsupportsregardingposture,bowelcareandavoidanceofpressuresores;or
• Apatientwithacognitiveimpairmentwhopresentswithafracturedhip,whentheymayforgetthattheyneedtoimmobiliseit;or
• ApatientwhoisinlabourwhentheyareDeaf
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Accessible services - general advice 3.1 Do not assume - ask
Peoplewithdisabilitiesaregenerallyexpertsontheirspecificaccessibilityrequirements.Noteveryonewithadisabilityneedsassistanceandanaccessibilityneedmaynotbeapparent,soitisimportantto:
• Askeachpersoniftheywouldlikeassistanceandaboutanyspecialrequirementstheymayhave • Askforinstructions,ifanofferofhelpisaccepted • Listenattentivelytowhattheirrequirementsareandhowtheycanbeaddressed • Allowthepersontohelpanddirectyou,ifyoudonotknowwhattodo.Thepersonwillindicate
thekindofhelpthatisneeded • Notbeoffendedifyourhelpisnotaccepted,asmanypeopledonotneedanyhelp;and • Documentanyrelevantaccessibilityorcommunicationresourcesorrequirements
Donotassumethatapersonwithadisabilitywouldbeunabletoanswerquestionsabouttheirhealthortheirsymptoms.Askthepersonthemselvesinthefirstinstance.
3.2 Making an appointment
Identify any accessibility requirements Whenbooking,forexample,appointmentsorprocedures,contactthepersonandprovidethemwith
anopportunitytoinformyouofanyaccessibilityrequirements.
Primarycontactforappointmentsisusuallybyletter.However,whereservicesareawareofadisability,primaryand/orfollow-upcontactshouldbeappropriatetotheperson’sneeds,andmaybemadebyletter,telephone,email9ortextmessage.
Establishfromserviceuserstheirpreferredmethodofcommunication,takingintoconsiderationtheirlevelofdisability;forexample,itmaybenecessaryforapersonwithavisualimpairmenttoreceivecommunicationviaemailortelephoneinsteadofletter.
Itisimportanttonotethatthemethodofcommunicationmaybedifferentforeachpersondependingontheirdisability.Also,twopeoplewiththesamedisabilitymayhavedifferentcommunication needs.
3. Guideline Three
9 ItisimportantthatwhereelectroniccommunicationcontainspersonalconfidentialinformationthatitisencryptedinaccordancewiththerelevantHSEInformationTechnology(IT)PolicyandProcedures.
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NATIONAL GUIDELINESAccessible Health and Social Care Services
Two way appointment systems Manyappointmentsystemsareone-wayonlyorrequireapersontotelephoneiftheywantto
changetheirappointment.TheseareinaccessibletopeoplewhoareDeaforhaveimpairedspeech.Itisessentialtohaveatwo-waysystemsothatallserviceusersmayrespond;forexample,tocancelorchangeanappointment.Thismaymeanreviewingtheexistingresponsemethodsinanarea.Haveasysteminplacetoensurethatsuchmessagesarerespondedtopromptly.
Using text messages Whereavailable,useamobilenumberoratelephonelandlinethatacceptstextmessages.(Please
notetextmessageservicesarenotavailableinallareasatpresent). • Publicisethenumberinyourserviceuserinformation;forexample,onyourwebsiteandinyour
hospital,GPsurgeryorhealthcentre • Iftextisthemethodused,alwaysgiveaquickacknowledgmenttoatextmessage,evenif
youdonotknowtheanswertothequestionthatisasked,sothatthepersonknowsyouhavereceived their message
3.3 Showflexibilitywhenschedulingappointments
Pleasenotethatthefollowingsectiondoesnotmeanthatpreferentialtreatmentwillbegiventopeoplewithdisabilities,butratherthatservicesshouldexerciseconsiderationforthecircumstancesofacasewhereappropriate.
Setting an appointment time Wherepossible,servicesshouldbeflexibleaboutappointmenttimesandvisitinghourswherethey
impactontheprovisionofaccessibleservices.Forexample: • Earlymorningappointmentsmaybeunrealisticforpeoplewhoneedmoretimetogetreadyor
whoneedacarerorPersonalAssistanttohelpthem • Findingaccessibletransportmayalsobemoredifficultearlyinthemorning • Alaterappointmentmayfacilitatefamilymembers,personalassistants,orsupportpersons
toaccompanyapersonwithadisabilitytoattendanappointmentortobetheretoassistwithfeeding,drinking,orusingthetoiletasnecessary
Minimising the waiting times for an appointment Itmaybeappropriate,whenpossible,tominimisewaitingtimesforapersonwithadisability
whentheyareattendingforappointmentswheretheirdisabilitymaycausethemtoexperience
34 35
unnecessaryanxiety,distressorpain.Forexample,apersonwithacognitivedisabilitymaybecomeagitatedordistressedinanewenvironmentorfindremaininginoneplaceforalong timedifficult.
Itcanbehelpfultotakethisintoconsiderationwhenschedulingappointments;forexample, thefirstappointmentafterlunchmayhavetheshortestwaitingtime.Itcanbehelpfulto scheduleappointmentswithaninterpretersothatwaitingtimesandcostofinterpretiveservices are minimised.
Allow additional time for appointments where necessary Someserviceusersmayneedmoretimetocommunicateeffectivelywithyou.Schedulelonger
appointmentswherenecessary;forexample;incaseswherethepersonhasacognitiveimpairmentorimpairedspeech,orthepersoncommunicatesthroughlip-readingorviaaninterpreter.
Allowenoughtimeforapersonwithadisabilitytogetfromoneplacetoanotherather/his ownpace.
3.4 Missed appointments
Whenapersonwithadisabilitymissesanappointment,itcanbehelpfultocheckwhether thiswasduetoinaccessibleinformationortoaninaccessiblebuildingorservice.Actonthefeedbackprovided.
3.5 Plan visits for routine check-ups or surgery in advance
Wherethereisapre-plannedvisit,suchasaroutinecheck-uporpre-plannedsurgery,itispossibletoidentifyandplaninadvancetomeetanyaccessibilityrequirements.
Contactthepersonbeforeadmissionandprovidethemwithanopportunitytoinformyouofanyaccessibilityrequirementstheywillhaveontheday.
Apre-visitmaybehelpfulinsomesituationstofamiliarisethestaffandpatient.Forexample, pre-visitstoahospitalorcliniccanhelpbuildtrustforapersonwithanintellectualdisability,sothattheyaremorecomfortableandincontrolwhentheyareadmittedtohospitalorwhentheyattend for treatment.
Letotherstaffknowwhenandwherethepersonisarrivingandwhattheplanis.
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NATIONAL GUIDELINESAccessible Health and Social Care Services
3.6 Queuingtobeseen
VisualDisplayUnitsinwaitingroomsandpublicareascaninformpeopleofappointments,directions,informationorqueuinginformation.Avisualsystemcouldbeaticketmachine,avisualdisplayorawhiteboard.
Ifpossible,havebothanaudibleandvisualsystemforlettingpeopleknowtheirturn.ThisistoensurethatpeoplewithimpairedvisionandpeoplewhoarehardofhearingorDeafareawarethattheyarebeingcalledfortheirturn.
Ifyouuseaticketsystemforthequeue,ensurethattheticketmachineisataheightwhereawheelchairuserorapersonofshortstaturecanreachit(andthatthereisanalternativeforpeoplewhoareblind).
Informpeoplehowtheywillbecalledandthelocationofthevisualdisplayunits,sothattheycansitwheretheycanseeorhearwhentheyarecalled.
Intheabsenceofavisualdisplayunitinthewaitingroom,makesurethatpeoplewithimpairedvisionorthosewhoareDeaforhardofhearingareinformedwhenitistheirturntobeseen.
3.7 Filling forms
Askifthepersonneedsassistancefillinginaform. Servicesshouldalsoconsiderhavingeasy-grippensavailableforthosewithmanual
dexterityproblems.
Ifthereceptionist’scounteristoohigh,forexample,forawheelchairuser,youmayneedtosteparoundittocompleteyourbusinesswiththepatient/serviceuser.
Aclipboardcanbehelpfulforpeopleunabletoreachthecounterwhenfillingoutformsor signing documents.
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Ifpossible,itmaybehelpfultoprovidetheoptionfortheformtobeaccessedandcompletedon-lineinadvanceofanappointment.
3.8 Information and notices
Provideinformationabouthowyoucanaccommodatesomeone’sdisability;forexample: • Contactdetailsforthepersonwhowilldealwithqueriesaboutaccessibilityifyoucannotanswer
theirquery • Thesymbolforahearingloop,ifavailable • AnoticeaboutyourpolicyonGuideDogsandAssistanceDogs;and • AnoticeontheprovisionofanIrishSignLanguageInterpreteronrequest
3.9 Mobility aids
Manypeoplewithphysicaldisabilitiesrelyonmobilityaids,suchasmanualandelectric wheelchairsormobilityscooters,andwalkingaids,suchascrutches,walkingframesandwalkingsticks. Do not:
• movemobilityaidswithoutpermissionfromtheowner(unlesstheyarecausinganobstructionwhichurgentlyneedstobemoved)
• pushaperson’swheelchairortakethearmofsomeonewalkingwithdifficulty,withoutfirstaskingifyoucanbeofassistance
• leanagainstaperson’swheelchairwhentalkingtothem.Forawheelchairuser,theirchairispartoftheirpersonalspace
3.10 Focus on the person
Duringaconsultation,focusontheperson,nottheirdisability.Therecanbeariskthatclinicianscouldattributesymptomstoaperson’sunderlyingdisability,andthusmisssomesignsofanunrelated health condition.
• Taketheperson’spresentinghealthcondition/clinicalneedsintoconsideration. • Giveconsiderationtotheirunderlyingdisabilityandthepotentialimpact(ifany)ofthesameon
thepresentinghealthconditionand/ortheircareplan • Beflexibleinordertoaddressindividualneeds
3.11 Concurrent therapeutic or care needs
Anindividual’sprimarydisabilityorotherpre-existingconditionmayinvolvespecifictreatmentorcareprotocols.Itisimportanttoknowaboutthesewhendiagnosingandtreatinganothercondition.
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• Talktotheperson,theircarer,GP,consultantorkeyworkerintheirdisabilitysupportserviceasappropriate,astheyareimportantsourcesofinformation
• Identifyanyspecificcareortherapeuticrequirementsrelatedtoexistinghealthconditionsortotheirdisability,suchasrequirementsinrelationtopersonalcare,feeding,lifting,posture,preventionofpressuresoresorbowelcare
3.12 Maintainconfidentiality
Confidentialityisabasicprincipleintheprovisionofhealthandsocialcare.
Aperson’sprivacycouldbecompromisedifthereisintimateorsensitiveinformationbeingconveyedordiscussedwiththirdpartieswithouttheirconsent.
Healthandsocialcareprovidersshouldbemindfulofthiswhencommunicatingwiththirdparties,suchasfamilymembers,personalassistants,staff,advocatesetc.Staffshouldusetheirdiscretiontoensurethattheydonotcompromisetheindividual’srighttoconfidentiality.
Relyingonchildrenandfamilymemberstointerpretortranslateisnotrecommendedonethicalandlegalgrounds.Thedocument‘On Speaking Terms’(seewww.hse.ie/eng/publications)givesmoreinformationonthis.However,theremaybesomesituationswherethisisunavoidable;forexample,anemergencysituationwhereafamilymemberisaskedtotranslateforaDeafserviceuser.However,thisshouldbetheexception.Childrenshouldnotbeaskedtointerpretortranslatefortheirparents.
3.13 Health Promotion
Allpatientsandserviceusersshouldbeconsideredinthedevelopmentofanyhealthpromotionstrategy:
• Providehealthpromotioninformationandguidanceinarangeofaccessibleformats • Ensurepeoplewithdisabilitiesareincludedinanypopulationscreeningprogrammesandhealth
checksasdeemedclinicallyappropriate;forexample,amammogram
Healthscreeningpremisesandequipmentshouldbedesignedsothatallpatientsandserviceuserscanusethem.Ifthisisnotthecase,effortsshouldbemadetoofferanalternative.Forexample,aMagneticResonanceImaging(MRI)scanrequiresapatienttoremainstillforaperiodoftime;somepatientsmayneedsedationpriortoundergoingthisscan.
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3.14 Integrated Discharge Planning
“Toensureserviceusersaredischargedortransferredsafelyandontimerequiresfullassessment
oftheirindividualhealthcareneeds,planningandco‐operationofmanyhealthandsocialcareprofessionals.”10
MakeaplanforcontinuityofcareandsupportafterdischargeinaccordancewiththeIntegrated Care Guidance: A practical guide to discharge and transfer from hospital.Thefollowingninestepsaretakenfromthedocument“Discharge and transfer from hospital—The nine steps quick reference guide”.
“Discharge and transfer from hospital—The nine steps quick reference guide”.
Step one: Begin planning for discharge before or on admission Pre‐admissionassessmentsconductedforplannedadmissionstohospital,suchaselective
procedures,oralternativelyatfirstpresentationtothehospitalforunplannedadmissions. • Mostaccuratepre‐admissionmedicationlistshouldbeidentifiedpriortoadministrationof
medicationinthehospital • Priorhistoryofcolonisationwithamulti-drugresistantorganism,example,Methicillin-resistant
StaphylococcusAureus(MRSA)orhealthcareassociatedinfectionshouldberecordedinhealthcarerecord,andhealthcarestaffinformedasperlocalhospitalpolicy
• Timelyreferralsaremadetomultidisciplinaryteamandreceiptofreferralsrecordedonintegrateddischargeplanningtrackingformwithin24hoursofreceivingreferral NOTE: this includes referrals from hospital to primary care services
• Eachserviceusershouldhaveanestimatedlengthofstay(ELOS)/estimateddateofdischarge(EDD)identifiedwithin24hoursofadmissionanddocumentedinthehealthcarerecord,relatedtotheestimatedlengthofstayrequired(SpecialDeliveryUnit,2013)
Step two: Identify whether the service user has simple or complex needs Theserviceuser’sneedsareassessedeitherpriortoadmissionoronfirstpresentationand
indicatewhethertheserviceuserhassimpleorcomplexneeds. • TheELOS/PredictedDateofDischarge(PDD)isdeterminedbywhethertheserviceneedsare
simpleorcomplex • Theserviceuserisplacedonanappropriateclinicalcareprogrammecarepathway,relevantto
theserviceuser’sdiagnosis,tosupportseamlesscareandmanagement
10ExtractfromIntegratedCareGuidance:Apracticalguidetodischargeandtransferfromhospital.
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Step three: Develop a treatment plan within 24 hours of admission Allserviceusershaveatreatmentplandocumentedintheirhealthcarerecordwithin24hoursof
admission,whichisdiscussedandagreedwiththeserviceuser/familyandcarers. • Thetreatmentplanincludesareviewofpre‐admissionagainstadmissionmedicationlist,witha
viewtoreconciliation • Changestothetreatmentplanarecommunicatedtotheserviceuserandrelevantprimarycare
servicesasappropriate,anddocumentedinthehealthcarerecord
Step four: Work together to provide comprehensive service user assessment and treatment Themultidisciplinaryteamcomprisesoftheappropriatehealthcareprofessionalstoproactively
planserviceusercare,setgoalsandadjusttimeframesfordischargewherenecessary. • Regularmultidisciplinaryteammeetingsorcaseconferencesforcomplexcarecasesareheld
whereappropriate • Rolesandresponsibilitiesforproactivemanagementofdischargeareclarified
Stepfive: Set a predicted date of discharge / transfer within 24 – 48 hours of admission TheELOS/PDDisidentifiedbytheadmittingconsultantinconjunctionwiththemulti‐disciplinary
team,duringpre‐assessment,onpostadmissionwardroundorwithin24hoursofadmissiontohospital(forsimpledischarges)and48hours(forcomplexdischarges),anddocumentedinthehealthcare record.
• TheELOS/PDDisagreedbyspecialtyandproactivelymanagedagainstatreatmentplanbyanamedaccountableperson(SDU,2013)
• TheELOS/PDDisdisplayedinaprominentposition • ChangestothetreatmentplanandELOS/PDDaredocumentedinthehealthcarerecord
(SDU,2013)
Step six: Involve service users and carers so they make informed decisions and choices Thetreatmentplanissharedwiththeserviceusers,andtheyareencouragedtoaskquestions abouttheplan. • Developinformationpackforserviceuser/carer,example,medicationslist,careofany
indwellingdevicessuchasintravascularlinesorurinarycatheters,woundcareand instructionsfortheserviceusertosharewiththeirGP,communitypharmacistandotherrelevanthealthcareprovider
• Counselandeducatetheserviceuser,consideringtheneedsofserviceuserswithpoorvision,hearingdifficulties,cognitivedeficits,culturalandlanguagebarriers.
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Step seven:Reviewthetreatmentplanonadailybasiswiththeserviceuser Practitionerstalktotheserviceuserdailyaboutprogress. • Thetreatmentplanismonitored,evaluatedandupdated(wherenecessary)andchangestothe
treatmentplanandELOS/PDDaredocumentedinthehealthcarerecord(SDU,2013) • Anyproblemsoractionsrequiredareidentifiedandareescalatedorresolvedasnecessary
Step eight: Use a discharge checklist 24 – 48 hours before discharge Thefamily/carers,PrimaryCareTeam/GP,PublicHealthNurse(PHN)andotherprimaryand
communityserviceprovidersarecontactedatleast48hoursbeforedischargetoconfirmthattheserviceuserisbeingdischargedandtoensurethatservicesareactivatedorre‐activated.
• Dischargearrangementsareconfirmed24hoursbeforedischarge(SDU,2013) • Clinicalteamsconductdischargingwardroundsatweekends(SDU,2013) • Processinplacefordelegateddischargingtooccurbetweenclinicalteamsortoother
disciplines,withinagreedparameters(SDU,2013)
Step nine: Make decisions to discharge / transfer service users each day Eachserviceuserdischargeiseffectednolaterthan11amonthedayofdischarge(SDU,2013). • Dischargemedicationreconciliationanddevelopmentofthedischargemedication
communicationtakesplaceinaplannedandtimelyfashion,preferablyonthedaybeforetheserviceuserleavesthehospital
• PrimaryCareservicesandhomelessnessservicesshouldbenotifiedwhenaserviceuserwhoishomelessorlivingintemporaryorinsecureaccommodationisduefordischarge
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Helpful tips
• Whileitisimportanttorespecttheperson’sprivacy,itisalsoimportantthatfamilymembers,carers,supportpersonsorthoseassistingthemunderstandkeyinformationfortheirsafety;forexample,whatmedicationshouldbetakenandwhen,andunderwhatconditionsthepersonneedstoreturntothehospital
• Liaisewiththepersonandothersasappropriate(theirfamily,carers,relevantserviceproviders,includingdisabilityservicesorthemedicalteam)arounddischargearrangements,aftercareandfollow-up.Confirmdischargearrangementsasappropriate
• Prepareaninformationpackandprovideinformationandeducationtotheserviceuserandthefamily/carerintheappropriatelanguage,verballyandinwrittenform.Thisshouldbeprovidedinaformatthatisaccessibletothem,wherepossible.Seepage37-38inthe“IntegratedCareGuidance”forwhatinformationtoincludeinaninformationpack.
– Iffollow-upisrequired,ensurethatacommunicationmethodappropriatetotheserviceusersaccessibilityneedsisidentifiedpriortodischarge
– Signpostapersontowardsdisabilityorganisationsforsupport,informationaboutbenefitsandservicesthattheycanavailofinthecommunityand,wherepossible,tellthemwhotocontactinspecialistdisabilityservices
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Communication
4.1 General principles of good communication
Figure 2: Albert Mehrabian’s Communications Model
Communicationismadeupof7%verbalcommunication(whatwesay),38%vocalcommunication(howwesayit),and55%non-verbalcommunication(bodylanguage).Whenapersonhasadisability,itcanimpactsignificantlyonhowtheycommunicate.Thiscouldinclude,forexample,someonewithimpairedspeechorhearing,someonewithlimitedornolanguage,orsomeonewhosecommunicationisimpairedbecauseofdementiaorbraininjury.
Failuretomakeappropriateprovisionforaperson’scommunicationdifficultymayresultinavoidableseriousrisksanderrorsforboththepatientandhealthcareprovider.
Thissectionprovidesguidanceoncommunicationunderthefollowingheadings: • Communication skills • Communicatingwithapersonwhohasadisability • Communicationaidsandappliances
Remembercommunicationshouldbenon-judgmental,unbiasedandrespectful.Treatanadultwithadisabilityasyouwouldanyotheradult.
4. Guideline Four
7%verbal
(wordsonly)
38%vocal
(includingtoneofvoice,inflectionand othersounds)
55%non verbal
(bodylanguage)
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COMMUNICATION SKILLS
4.2 Establish how the person prefers to communicate
Establishtheperson’spreferredmethodofcommunication.Thiscanbedonewhencontactisfirstmadewiththeservice.
Apersonwithasignificantdisabilitymayhaveafamilymember,carerorsupportpersonwhocanprovideguidanceontheappropriatemethodsofcommunicationinsituationswherethepersoncannotdosothemselves.Thismightincludeinformationonaspecificcommunicationaidanddevicewhichmakescommunicationwiththepersonpossible.
IncaseswhereEnglishisnottheperson’sprimarylanguage,itmaybenecessarytoarrangeforaprofessionallytrainedinterpreter.Itmaybehelpfuliftheinterpreterhasanunderstandingofhowthechosenmethodofcommunicationworksorifnecessarytotaketimetounderstand.
4.3 Notifyrelevantstaffofthepreferredmethodofcommunication
Informationonaperson’spreferredmethodofcommunicationshouldbepassedontorelevantstaffsothatpeopledonothavetorepeattheirrequirementsateachstageoftheserviceuserjourney.Thisinformationshouldbeincludedinthepatient’schartor(withtheperson’sconsent)inasignattheirhospitalbed.
4.4 Communicating with the person
Active Listening • Communicationisatwo-wayprocess.Wherepossible,alwayscommunicatedirectlywith
theindividual,ratherthantheircarer,supportpersonorinterpreter.Beawareofindividualdifferencesanddiverseneeds
• Itisimportanttonotonlylisten,buttohearthemessage • Givecommunicationthetimeneededsothatstaffandthepatient/serviceusercan
communicateandunderstandwhatisbeingcommunicatedbytheother.Apersonwhoisunabletospeakortohear,whohasdifficultyprocessingorretaininginformation,orwhocannotreadmayrequiremoretime.Aswithallinteractionswithpatientsandserviceusers,moretimemayalsoneedtobefactoredintocommunicatebadnewsinasensitiveway
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Verbal communication • Speakclearly,conciselyandslowly • Useplainlanguagethatiseasytounderstand.Ifyoumustuseamedicalterm,explainwhatit
meansfirst • Give accurate information
Effectivequestioning • Askonequestionatatime(avoidbombardment) • Givethepersontimetorespondwithoutunnecessaryinterruption • Givethepersontimetoaskquestions • Donotbeafraidtoaskthesamequestiontwice.Repeatwhatyouhavesaidwhenapersonis
havingdifficultyunderstanding,andverifythattheyhaveunderstood • Phrasingquestionsinawaythatapersoncangiveasimple“yes”or“no”answercanbehelpful
in some situation
Non-verbal communication - positive body language • Facethepersonyouarecommunicatingwith • Maintaineyecontact(althoughthismaynotbepossibleorcomfortableforsomepatients/
serviceusers) • Non-verbalcommunication,suchasgestures,facialexpressionsandappropriatetouch,canbe
importantwhencommunicatingwithpeoplewhoareexperiencingcommunicationsdifficulties • Gesturesandfacialexpressionscanbeusedtoexpressanemotion.Forexample,athumbs-up
canbeanacceptablewayofreassuringapersonthatthingsareallright
Use visual aids • Drawings,diagramsorphotographsareausefultoolincommunicatinginformation.Theycanbe
particularlyusefulincommunicatingwithsomeonewhoisDeaforhardofhearing,orsomeonewithanintellectualdisabilityorabraininjury
Give information to take away • Peoplewithdisabilitiescanfinditusefultohavetheinformationyouhavecommunicatedtothem
orallygiventotheminaformattheycanreviewlater;forexample,apersonwithacognitiveimpairmentmayneedwritteninformationtohelpthemrememberanyinstructionstheyreceived.Thisisparticularlyimportantforinformationaboutfollow-upcare,exerciseormedication
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• WritedownwhatyouhavesaidinplainEnglishclearly,conciselyandaccurately • Avoid using jargon and technical medical language • Alwaysexplainanyabbreviations • Remembertypedinformationiseasiertoreadthanhandwriting • Wherepossible,provideinformationinanaccessibleformatsuitabletotheindividual’s
needs.Thiscouldbeinlargeprint(changethefontsize),bye-mail,bytextmessageorwherepracticableinaudioformat
COMMUNICATINGwITHAPERSONwHOHASADISABIlITY
4.5 Communicating with a person who is unable to stand or who uses a wheelchair
Positionyourselfateyelevelbysittingbesidetheperson.Ifthisisnotpossible,standastepbacksothatthepersondoesnothavetostraintheirnecktoseeyou,orcrouchdownifappropriate.
4.6 Communicatingwithapersonwithspeechdifficulties
Talktothepersonasyouwouldtalkanyoneelse,andlistenattentively.
Askthepersontohelpyoutocommunicatewithherorhim.
Ifthepersonusesacommunicationdevice,suchasamanualorelectroniccommunicationboard,askthepersonhowbesttouseit.Thesedevicescanprovidevisualinformationthatmakeslanguageaccessibleforpeoplewithspeechimpairments.
Allowtimetogetusedtoaperson’sspeechpattern.
Allowtimetoreplyasitmaytakethepersonawhiletoanswer.Waitforthepersontofinish,ratherthancorrectingorspeakingfortheperson.
Askshortquestionsthatrequirebriefanswers,oranod“yes”or“no”.
Neverpretendtounderstandifyouarehavingdifficultydoingso.Ifyoudonotunderstandwhatthepersonissayingtoyou,letthemknowthis.Askthepersontorepeatthemessage,tellyouinadifferentway,orwriteitdownifpossible.
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Repeatwhatyouhaveunderstoodandallowthepersontorespond.Theresponsewillguideyourunderstanding.
Makeeyecontactwiththepatientorserviceuserevenwhensomeoneelseisinterpretingforthem.
4.7 Communicating with a person who has a visual impairment
Bepunctual.Lackofpunctualitycancauseapersonwithsightlossunnecessarystress.
Rememberalsothatthepersonmaynotbeabletoseewhetheryouhavearrived. • Alwaysletapersonwithsightlossknowwhenyouareapproaching.Asuddenvoiceatclose
rangewhentheydidnothearanyoneapproachcanbeverystartling • Speakfirstfromalittledistanceawayandagainasyoudrawcloser.Saytheirnamesothatthey
knowyouarespeakingtothem • Greetapersonbysayingyournameandwhatyourroleis.Donotassumetheyknowwhoyou
are,eveniftheyknowyou
Talkdirectlytotheperson,byname,ratherthanthroughathirdparty.
Dotrytospeakclearly,facingthepersonwithsightlosswhileyoudoso.
Donotassumewhathelptheyneed.Beforegivingassistance,alwaysaskthepersonfirstiftheywouldlikehelpand,iftheydo,askwhatassistanceisneeded.
Apersonwithavisualimpairmentmayrequest‘sightedguide’assistancesothatthepersoncanfindher/hiswayaroundtheemergencydepartmentortothetoilet.Ifapersonwithsightlosssaysthattheywouldliketobeguided:
• Offerthemyourelbow • Keepyourarmbyyourside,andthepersonwithsightlosscanwalkalittlebehindyou,holding
yourarmjustabovetheelbow • Whenassisting,itishelpfultogivecommentaryonwhatisaroundtheperson;forexample,“the
chairistoyourright” • Ifyouhavebeenguidingablindpersonandhavetoleavethem,bringthemtosomereference
pointthattheycanfeel,likeawall,tableorchair.Tobeleftinanopenspacecanbedisorientatingforapersonwithnovision
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• Ensurethattheyknowwhatisaroundthem.Describewhatisintheroom,includingequipment,anddescribetheroomfromlefttoright.Giveclearinstructionsaboutthelocationoftoilets,drinksmachines,anystepsorotherfeatures,suchaschangesinfloorsurfaces
Donotassumethatapersonusingawhitecaneorguidedogistotallyblind.Manypeoplewithsome remaining vision use these.
Donotassumethat,becauseapersoncanseeonething,theycanseeeverything.Ifnecessary,askthepersoniftheycanseeaparticularlandmarkorobject.
Neverdistractaguidedogwheninharness.
Donotpointifyouaregivingdirections.Giveclearverbaldirections;forexample,“thedooristoyourleft”.
Ifyouhavebeentalkingtoapersonwithsightloss,tellthemwhenyouareleaving,sothattheyarenot left talking to themselves.
Explainprocedurestosomeonewhocannotseewhatyouaredoing. • Clearlyexplainalltheproceduresandwhatwillbedonestep-by-step • Ifapersonisaskedtolieonanexaminationcouch,giveclearverbalinstructionsaboutwhatwill
happen,wherethecouchisandwhatthepersonshoulddo • Tellthepersonwhatpartsoftheirbodyyouwillexamineandwhereyouwilltouch • Ifyouaregivinganinjectionoraneedleprick,explainwhereyouwillputtheneedleandwhatwill
happen(forexample,drawingblood,insertingadriporgivingsedation) • IfapersonishavinganMRIscanorx-ray,explainallproceduresclearlyandletthepersonknow
whenyoumovebehindascreenorintoanotherroom
Whenservingfood,staffshould: • Tellpeoplethatthemealhasarrivedandhasbeenplacedinfrontofthem • Identifythefoodontheplateusingtheclocksystem,ifapersonhasavisualimpairment;for
example,“themeatisatsixo’clock,beansatthreeo’clockandpotatoatnineo’clock”
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Helpful hints • Iffoodisservedonatraythathasagoodedge,anythingspilledwillstayonthetray • Agoodcolourcontrastbetweenadrinkanditscontainerisusefultoavoidaccidents-brightly
colouredcupsmaybeseenmoreeasily.Forexample,aglassofwatermaynotbeeasilyseen;teainawhitemugiseasiertoseethaninabrownmug
TheNationalCouncilfortheBlindofIrelandhasdevelopedspecificinformationresourcesforhealthcareprofessionals,whichcanbeaccessedathttp://www.ncbi.ie/information-for/health-professionals.Thetopicscoveredinclude:
For All Health Professionals • GuidingaPersonWithaVisionImpairment • GettinginTouchWithourServices
NursingStaff • AssistingAdultsWithSightLossinHospital • AssistingChildrenWithSightLossinHospitalandatthe
Doctor’sSurgery CareStaff • PracticalTipsforCareStaff • LeisureActivitiesforDayCentres
Public Health Nurses • OlderPeopleWithSightLoss–LivingatHome • PracticalTipsforCareStaff
Occupational Therapists • OlderPeopleWithSightLoss–LivingatHome • PracticalAdviceforEverydayLiving • ChangesinYourOwnHome
4.8 Communicating with a person who is hard of hearing or Deaf
Aperson’shearingmaybeaffectedatanystageoftheirlife,fromthetimeofbirthorintheirlateryears.Lossofhearingmaybeaninvisibledisability.
PeoplewhohavegrownupwithhearinglossmayhaveIrishSignLanguage(ISL)astheirprimarymeansofcommunication,andthesearetermedtheDeafcommunity.AsEnglishisconsideredtheir
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secondlanguage,somehavedifficultywithwrittenEnglish.ItisimportanttouseplainEnglish,andtoprovideinformationinsimple,concreteterms.Visualaidsarealsohelpful.
Peoplewhoexperiencehearinglossastheygrowoldermayrelyonhearingaids,onlip-readingoronwritteninformation.TheygenerallywillnothavelearnedIrishSignLanguage.
LearningafewbasicsignsofIrishSignLanguagecanhelpDeafpeoplefeelathomeandwelcome.The Irish Deaf SocietyhasproducedaDVDcalled“Everyday signed vocabulary in medical settings for service user care”,andabookletof“Basic Medical Signs for Irish medical institutions on common medical sign language for service user care”.YoucanfindbasicsignsandinformationaboutIrishSignLanguageclassesonwww.IrishDeafSociety.ie
InthePalliativeCaresetting,thetypeofinformationthatneedstobeconveyedcanbedifficult.Manypatientswishtoknowabouttheirdiagnosisorprognosis;however,othersmayprefertonegotiateagradualdisclosureofinformation.Muchofpalliativecarepracticeisaboutsymptommanagement,requiringaccuratehistorytaking.ThiscanbemoredifficultwhenaserviceuserisDeaf.Inthisregard,itisimportanttoensurethatanISLInterpreterisavailabletointerpret.
Itisthoughtthat,whenapersonisdying,thepersonmaystillbeabletoheardespitebeingveryweakandmainlysleeping,andmanyhealthcareprofessionalscontinuetospeakwiththepersontoprovidethemwithreassuranceandsupport.WhenapersonisDeaf,itisimportanttobemindfulthatotherformsofcommunication,suchastouch,mayconveyemotionalsupport.However,itcanbehelpfultocheckwiththepersonortheirfamilyinadvanceastowhetherornottheywouldbecomfortablewithtouch.
General points
• Askifsomeonecanhearyouclearly;donotassumethattheycan • Askthepersonwithahearingdifficultyhowtheywanttocommunicate.Thiscouldbespoken
English,writtenEnglish,IrishSignLanguageorcommunicationappropriatetosomeonewhoisdeafblind
• Youmayneedtotaptheperson’sarmgentlytogettheirattention.Iftouchisnotappropriate,youmayneedtouseanotherapproach;forexample,inthecaseofaburnvictimyoumightwaveyourhandintheirlineofsightorswitchalightonandoff
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• Wherepossible: - provideinductionloopsystemsforhearingaidusersoraportablelisteningdeviceforhardof
hearingserviceusers,andtestthemregularly - providewrittenversionsofanyaudionoticesandcommunications - supporttheinformationgiveninconversationwithwrittenhandouts - andprovidediagramsorpictureswhichmaybeusefulinsupportingtext. • Makesurethatonlyonepersonspeaksatatime • Usegestures,bodylanguageandfacialexpressionstoemphasisethesenseofwhatyouare
tryingtocommunicate;forexample,nodratherthansaying“hmmm”toshowyouarelistening.Takecarethatthesedonotappearover-exaggeratedorpatronising
4.9 Communicating with a person who lip reads
Get and keep the person’s attention • Gaintheperson’sattention;forexample,taptheperson’sarmgentlytogettheirattention,wave
yourhandintheirlineofsightorswitchalightonandoff • Talkdirectlytotheperson
Position yourself well • Positionyourselfthreetosixfeetfromthepersonandatthesamelevelasthem • Makesureyourfaceisingoodlightwhileyouspeak.Donotstandwithalightorawindow
behindyouasshadowsmaymakeitdifficulttoreadyourlips • Checkwiththepersonthattheycanseeyouclearly • Minimiseanybackgroundnoise
Assist the person to see your face and lips • Makesuretheyhaveaclearviewofyourfaceandlips • Donotcoveryourmouthorhaveanythinginorcoveringyourmouth;forexample,chewinggum,
pen,paper,hands • Keepyourheadstillwherepossible • Stoptalkingwhenlookingdownoraway
Speak clearly • Letthepersonknowthetopicofconversationandsignalanychangeintopicbypausing • Speakatamoderatepaceandmaintainanormalrhythmofspeech
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• Donotshoutbecausethiscandistortyourlippatterns • Donotover-emphasisemouthmovementsasthiswilldistortyourlippatterns • Sentencesorphrasesareeasiertounderstandthansinglewords • Ifawordorphraseisnotunderstood,usedifferentwordswiththesamemeaning
Assist the person to understand • Knowthatlipreadingistiring • Allowtimeforthepersontotakeinwhatyouhavesaid • Usenaturalbodylanguageandfacialexpressionbutavoidexaggeratedgestures • CheckwiththeDeaforhardofhearingpersonregularlytoensuretheyunderstand.Some
healthcareprovidersmakethecommonmistakeofpresumingDeaforhardofhearingpeoplecanlipread.Thisisnotalwaysthecase.Evenifthepersoncanlipread,accuracyinlipreadingisestimatedat30%,resultingindisproportionatelyhighratesofmiscommunicationandmisunderstanding.Thismayhaveveryseriousimplicationsformedicationmanagementorinthefollowupcareofacondition
• Someofwhatyousaymaybemissed–supplementwhatyousaywithwritteninformation,notesanddiagrams.Whenyouwritesomethingdown,useplainEnglish
4.10 Communicating in writing with a Deaf or hard of hearing person
• Askthepersonhowtheywouldprefertocommunicate • Penandpaper,textmessaging,e-mail,speedtextandwrittenhandoutsofinformationprovided
areusefulwaystocommunicatewithsomeonewhoisDeaforhardofhearing • Ifusinge-mailortextmessagestoarrangeanappointment,ensureanye-mailsystemortext
messageservicecanreceivereplies(ratherthanano-replynumberore-mailaccount)sothatpeoplecanrespondandcandiscussaccessrequirementsforanupcomingappointment.Ifnot,makealternativearrangementstoenableareply
• Alwaysfollowclearprintguidelines.(Seethewww.ncbi.ieforfurtherinformation) • Ifthepersonwantstocommunicatebynote-writing: - Bepatient,itmaytakelonger - AlwaysuseplainEnglish - Ensureyourhandwritingisclearandlegible - Allowthepersontokeepownershipofthenotes - Asktheperson’spermissionifyouwanttousethenotesaspartoftheirtreatmentplan;and - Treatallhandwrittencommunicationsasyouwouldaprivateconversation
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4.11 Communicating with a person who uses Irish Sign Language
SomeDeaforhardofhearingpatientsandserviceusersuseIrishSignLanguage(ISL)astheirfirstlanguageandpreferredmethodofcommunication.NoteveryonewhosignswilluseISL;forexample,someonefromEnglandwhoisonholidaywilluseBritishSignLanguage(BSL),anAmericanwilluseAmericanSignLanguage(ASL),andtheyareallverydifferent.
Patientsandserviceusersareentitledtorequestandbeprovidedwithaqualifiedsignlanguageinterpreter.Whiletheonusisontheserviceusertorequestaninterpreter,itistheresponsibilityofstafftomakethearrangements.Staffshouldroutinelyletserviceusersknowthat:
• theyhavetherighttoaninterpretertoassistincommunication • thereisnocosttotheserviceuser;and • staffwillarrangefortheinterpreter
Itisconsideredgoodpracticeforservicestoarrangeaninterpreterwithoutbeingpromptedincaseswhererepeatvisitsarenecessaryorwhereitisknowninadvancethattheserviceuserneedsone.
Notprovidingaqualifiedsignlanguageinterpreterwhendeliveringcaretoapatientorserviceuserplacesthehealthorsocialcareproviderinaprecarioussituation:
• informationmaybemisinterpretedormisunderstoodwhichmayleadtoapotentialadverseoutcomeforthepatientorserviceuser;or
• thelackofprovisionofaqualifiedsignlanguageinterpretermayresultininvalidconsentforinvasivemedicalorsurgicalprocedures
Aninterpretermayalsobenecessaryiftheprimarycareroradvocateofapatient/serviceuserisDeaf;forexample,Deafparentswithachildwhocanhear.
TheHSEguidancedocumentonusinglanguageinterpreters,‘On Speaking Terms’,isavailableonwww.hse.ie
IfitisnotpossibletogetanIrishSignLanguageinterpreterinanemergencyoronshortnotice,itcanbehelpfultohaveastandardpre-preparedlistofwrittenquestions,picturesandsymbolsthatyoucanusetocommunicatewithapersonwhoisDeaf.Thequestionsorpicturesshouldreflecttheusualquestionsyouaskwhensomeoneisadmittedtohospital,suchas“wheredoesithurt?”,“doyouhaveprevioushealthconditionsthatweshouldknowabout?”,or“areyouonany
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medication?”MakesurethatthequestionsarewrittenclearlyandinplainEnglish.
TobookandISLinterpreter,seewww.slis.ieore-mailbookings@slis.ie.Youmayneedtobookaninterpreteruptotwoweeksinadvance.
4.12 Irish Sign language interpreters
SignlanguageinterpretersaretheretotranslatebetweenIrishSignLanguageandEnglish.TheyinterpretforboththeDeafpersonandhealthandsocialcarestaff.
ProfessionalIrishSignlanguageinterpreters: • WorktoaCodeofEthicsandProfessionalConductwhereconfidentialityisacorevalue • Translatenotonlythewordsbutalsotheculturalmeanings;and • Aretrainedtobeimpartial.Donotexpectthemtogiveapersonalopinionofapatient
Theinterpreterisnotacaseworkeroranadvocate.Theymayintervene,forexample,toasksomeonetosignorspeakmoreslowly,toclarifyunderstandingortoaskthatinformation berepeated.
WiththeconsentoftheDeafpersonandwherepossible,providetheinterpreterwithbackgroundnotesandinformationinadvance.Thiswillenabletheinterpretertocarryouthigherqualityinterpretation.
Allowextratimewhenworkingthroughaninterpreterespeciallyinmedicalsettingswheretermsmaynotbeeasilyunderstood.
MakesurethattheinterpretersitsnexttoyouandthattheDeafpersoncanseebothofyouclearly.
DirectwhatyousayandmakeeyecontactdirectlywiththeDeafperson,notwiththeinterpreter.
Givetheinterpretersufficienttimetotranslatewhatiscommunicated.RememberthataninterpreterhastointerpreteverythingthatbothaDeafpersonandahearingpersonsayduringthecourseofaninterpretingsession.
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4.13 Deaf interpreters
DeafinterpretersareDeaforhardofhearingpeoplewhohavebeenprofessionallyrecognisedasaccreditedinterpreters.Contactviabookings@slis.ie.
• TheyhavefluencyinIrishSignLanguageandworkintandemwithIrishSignLanguageinterpretersorDeafadvocates
• Theyareskilledintechniquesofinterpretationandtranslatingmeaningbetweenlanguages and cultures
• Theyhavein-depthknowledgeoftheDeafcommunityandcaninterpretforDeafforeignnationals,forvulnerableDeafindividuals,inmentalhealthsettingsandforDeafindividualswithanintellectualdisability
• Theyworktothesameguidelines,ethicsandstandardsasIrishSignLanguageinterpreters
4.14 IrishRemoteInterpretingService(IRIS)
TheIrishRemoteInterpretingService(IRIS)usesaweb-basedprogrammetoconnecttoacentralinternetserverwhereaninterpreteractsonbehalfofthepractitionerandtheDeafperson.
• Thisison-screenvideointerpretationoveraninternetconnection • Thewebbasedprogrammedoesnotreplacefacetofaceinterpretationandshouldonlybeused
forgenericappointments;forexample,bookinganappointment,checkingtimesordetailswiththeDeafperson
• Ifanappointmentbecomesmoreseriousorrequiresmorein-depthdiscussions,afacetofacemeeting should be booked
• Aserviceproviderorserviceuserwillneedaccesstobroadband,amicrophone,speakersandacamera/videofacilityontheirPCorlaptop
• Contact www.slis.ie
4.15 Deaf Peer Advocates
DeafPeerAdvocatescanassistinbreakingdown,understandingandmakingsenseof information received.
• Theyarenotsocialworkers,carersorsignlanguageinterpreters • Theirroleistoensurethepatientorserviceuser’srightsareupheld.Theyareimpartialandwork
for the best for the client.
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4.16 Communicatingwithapersonwhoisdeafblind
Apersonwhoisdeafblindhascombinedsightandhearingloss. • Awhitecanewitharedbandsignifiesthatsomeoneisdeafblind • Apersonwhoisdeafblindneedsaspecialisedinterpreter.Thispersonworksintandemwiththe
deafblindpeeradvocatetoensurethepersonisunderstoodandunderstandswhatisbeingsaid • Apeeradvocateisapersonwhosetouchandcommunicationstyleisknowntothepersonwho
isdeafblindandwhocanrelayinformationtothehealthcareworker • Howtocommunicatewithapersonwhoisdeafblindisanindividualmatter.Thepractitioner
adjuststheirstrategytotheperson’sneedforsupport • Thedeafblindalphabetisasystemtofingerspellwordsontothehandofapersonwho
is deafblind
4.17 Communicating with a person with an intellectual disability
Peoplewithanintellectualdisabilitymayhavedifficultyunderstandinglanguagethatiscomplex,containsabstractconceptsortechnicaljargon.Itisthereforeimportantwhentalkingwithsomeonewithanintellectualdisabilityto:
Speakdirectlytothepersonconcerned. • Ifitisnecessarytoobtaintheinformationfromacarerorfamilymember,maintainthefocuson
thepersonwiththedisabilitythrougheyecontactandbodylanguage
SpeakclearlyandmoreslowlyusingsimpleplainEnglishandshortsentences. • Addressthepersonanduseatoneofvoiceconsistentwiththeirage–sospeaktoanadultas
another adult • Pausefrequentlytoenablethepersontoprocesswhatyouaresaying • Chooseaquietplacewithfewdistractionsifpossible • Giveonlyonepieceofinformationatatime,inshortsentences • Checkyouhavebothunderstood • Don’tpretendtohaveunderstoodwhenyouhaven’t • Usewordsandphrasesfamiliartoall • Makeitclearifyouarechangingthesubject • Don’tignorethepersonorwalkawayifyoudon’tunderstand.Tellthemyoudon’tunderstandso
youaregoingtofindhelp
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Somepeoplewithanintellectualdisabilitymayhavetroubleexpressingtheirthoughtsorfeelingssoitisimportanttoprovideenoughtimeforthepersontoreply,commentandformulatetheirquestionsoranswers.
• Askonequestionatatimeandprovideadequatetimeforthepersontoformulateandgive theirreply
• Usevisualcues–suchasobjects,picturesordiagrams–andfacialexpressionandbodylanguagetoconveyinformation,andtotryandunderstandwhatsomeoneistryingtosay
• Ifthepersonusesacommunicationdevice,thenensuretheyhaveaccesstoit,readthedirections(usuallyonorinthedeviceorbook)anduseitwiththem
Somepeoplewithanintellectualdisabilitycanfindithardtorecogniseandcommunicatetheirsymptoms,painordiscomfort.Asaresult,healthandsocialcarestaffmayrelyonfamilymembersorsupportworkerstobringhealthproblemstotheattentionofhealthcarestaffandtoprovideagoodmedicalhistory.
• Itisimportanttoremember,however,thatsupportworkersmayalsobeunawareofsymptomsand,withaturnoverinsupportstaff,maynotalwaysknowthepersonwell
Recognisethatdifficultbehaviourmaybebecausethepersonisinpain,anxious,confused. Theremaybetimeswhenyoudonotunderstandwhatthepersonissaying.Inthissituation,itmaybehelpful:
• Toaskthepersontorepeatwhattheyhavejustsaid • Ifyoucouldaskanaccompanyingsupportworker/familymembertohelpyouunderstandorto
showyouhowthepersonsays“yes”and“no”,andthenaskyes/noquestionstoidentifywhatitistheyaresaying;or
• Ifyoustillcannotunderstand,showrespectforthepersonandacknowledgetheimportanceoftheirmessagebyapologisingforfailingtounderstandthem11
Physicalexaminationmayalsotakelongerduetoacombinationofdifficultieswithcommunication,withaccuratehistory-takingorwithphysicalexaminationduetoanxietyorchallengingbehaviours,andthismeansthatlengthierassessmentsshouldbeplannedfor.
11Someofthismaterialwastakenfromhttp://www.cddh.monash.org/assets/documents/working-with-people-with-intellectual-disabilities-in-health-care.pdf
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4.18 Other communication challenges
Patientsandserviceusersmayhaveanumberofdifficultieswhichimpactontheircommunicationskills;forexample:
• Problemsanddifficultieswithsocialinteraction,suchasalackofunderstandingandawarenessofotherpeople’semotionsandfeelings
• Impairedlanguageandcommunicationskills,suchasdelayedlanguagedevelopmentandaninabilitytostartconversationsortakepartinthemproperly
• Unusualpatternsofthoughtandphysicalbehaviour.Thisincludesmakingrepetitivephysicalmovements,suchashandtappingortwisting.Aserviceusercanbecomeupsetifthesetroutines of behaviour are broken or disturbed
• Thecurrentstageofaperson’swellnessmayimpactcommunication.Challengesexperiencedmayreferencetheindividual’sdesireandcapacitytoengageinarecoveryfocussedprocess.Whenapersoniswellthesamechallengesmaynotexist
• Yearsofinstitutionalcarewithinmentalhealthorintellectualdisabilityservices,wherebypeoplemayhavebeendependentonothersbynecessityorbychoice,mayhaveanimpactonhowapersonengageswithstaff.Theymayneedadditionalsupportinastagedandappropriatewayforaperiodtoinitiategreaterparticipationandenablethemtoassumeresponsibilityfordirectingand/ormanagingtheirowncaretothegreatestextentpossible
Patientsandserviceusersmayalsohaveadisabilitywhichresultsinadversereactionstonoise,crowds,waiting,food,andsmellsamongothers.Thismaycausedifficultywhenaccessinghealthorsocialcareservices.Recognisethatpeoplewillhavedifferentlevelsofcomprehension,dependentontheindividualandcircumstances.Inviewofthis,thefollowingaregeneralguidelinesmaybehelpful.
• Considerusingvisualaidstohelp;forexample,pictures,pointing,pictorialtimetables • Explainwhatisgoingtohappenbeforestarting • De-cluttercommunication–beawareofbackgroundnoiseandnothavingoverstimulation • Useclearsimplelanguagewithshortsentences • Usefewwordsinsteadofmanyanduseaslittleabstractlanguageaspossible • Makeyourlanguageconcreteandavoidusingidioms,irony,metaphorsandwordswithdouble
meanings;forexample,“It’srainingcatsanddogsoutthere”.Thiscouldcausethepersontolookoutsideforcatsanddogs.Somepatientsandserviceusersmayinterpretlanguageliterallywhichcancauseconfusion
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• Givedirectrequests-suchas“Pleasestandup”ratherthan“Canyoustandup?”-asthismayresultinthepersonstayingseatedoranswering“yes”,asthepersonmaynotunderstandwhatyouareaskingthemtodo
• Giveonecommandatatimeandcheckthatthepersonhasunderstoodwhatyouhavesaid–somepeoplemayspeakclearlybutcanlackfullunderstanding
• Donotoverdependonusingnon-verbalcommunication–beasconcreteaspossible • Allowforextraprocessingtime–somepeopleneedtensecondsormoretoprocesswhatthey
are being asked or told • Ifnecessary,youmayneedtorestatethemessageinanotherwayandemphasisethemost
importantaspectsofthemessage • Donotinsistoneyecontact.Lackofeyecontactdoesnotnecessarilymeanthatthepersonis
notlisteningtowhatyouaresaying • Rememberthatwhenapersonisquitestressed,heorshemaynotlistenorprocessyourwords
until he or she is calm • Donotbepersonallyoffendedifthepersondoesnotappeartoengagewithyou. • Apersonwithsignificantcommunicationchallengesmaybenefitfromahomevisitorapre-visit
tothehealthandsocialcaresettingpriortoascheduledappointmentwherepossible
Thefollowingtableprovidesalistofquestionsthatstaffcanasktohelpthemidentifyaservicesusers communication needs.
Ask yourself: 1. Howmuchlanguagecanthepersonunderstand? 2. Howwelldoesheorsheunderstandthenonverbalaspectsofcommunication? 3. Doesthepersonneedmoretimetoprocessinformation;forexample,willyouneedtoslow
yourrateofspeech,shortensentences,orallowtimeforthepersontoabsorbinformation? 4. Doesithelptowordyourmessageinaparticularfashionordeliveritinaspecificstyle?
Willtheperson“tune-out”peoplewhouseaparticularcommunicationstyle(forexample, assertiveandloud,soft-spokenetc.)?
5. Whatisthebestwayofgettingandkeepinghisorherattentionotherthaneyecontact? (Forsomeindividuals,eyecontactisdifficult).
6. Willbackgroundnoise,otherstimuli(suchaspeople,food,movement,etc.)impactonthe person’sabilitytoprocessamessage?
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7. Isthepersonabletoprocessamessagewhenupset?Howdoyouknowthepersonis upsetandwhatcanyoudointhiscase?
8. Willgestures,visualaidsortexttoaidinthecomprehensionofmessages? 9. Doesthepersonhavepersonalspaceboundariesthatshouldnotbeviolated?Thismay
mean no touching or not standing too close. 10. Doesthepersonfindithardtounderstandsubtlereferencesorhiddenmeanings? 11. Hasthepersonbeenininstitutionalcarewithinamentalhealthorintellectualdisability
settingforanextendedperiodoftime?Ifso,theymaybemoredependentonothersby necessityandsometimeschoice.
COMMUNICATION AIDS AND DEVICES
4.19 Communication boards
Manualorcomputerisedcommunicationboardsprovidevisualinformationthatmakeslanguageaccessibleforpeoplewithspeechimpairments.Theydisplaywrittenwords,photographsandsymbols.Asymbolshowingacupcommunicates“I want a drink”,orletterscanbespeltout usingafinger,handorfoot.Theyareportable.Theycanbefittedtoalaptrayforusebyawheelchairuser.
4.20 Communication passports
Communicationpassportsaresometimesusedbypeoplewithanintellectualdisabilityorpeoplewhohavedifficultyinspeakingtorecordtheirviews,preferencesandcommunicationrequirements.
• Theycanoftenhelpstafftounderstandthepersonwithadisabilityandpromotesuccessfulcommunications.Communicationpassportsareawayofmakingsenseofformalassessmentinformationandrecordingtheimportantthingsaboutaperson,inanaccessibleandperson-centredway,inordertosupportaperson’stransitionsbetweenservices
• Theyaimtodescribetheperson’smosteffectivemeansofcommunication,andhowotherscanbestcommunicatewithandsupporttheperson
• Theycandrawtogetherinformationfrompastandpresentandfromdifferentcontextstohelpstaffandothersunderstandthepersoninordertohavesuccessfulinteractions
Forfurtherinformationandtemplatesforcommunicationpassports,referto: http://www.communicationpassports.org.uk/Home/
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4.21 Lámh signs
ProvisionofLámhsignscanbeusedtosupportcommunicationswithpeoplewhohaveanintellectualorcommunicationsdisability.LámhisamanualsignsystemusedbychildrenandadultswithintellectualdisabilityandcommunicationneedsinIreland.LámhsignsarebasedonIrishSignLanguage(ISL)andspeechisalwaysusedwithLámhsigns.Forfurtherinformation,refertowww.lamh.org
4.22 Induction loops
Hearinginductionloopsystemsforhearingaidusersaredevicesthatcanbeprovidedinafixedlocationorwornaroundaperson’sneckasaportabledevice.
4.23 Communication aids as part of communication strategy
Itcanbehelpfultousecommunicationaidsaspartofanoverallstrategyforcommunicatingwithpeoplewithspecificdisabilities.Forexample,Lámhsignscanbeusedalongsidecommunicationpassportsandothervisualsupports,suchaspicturesandsymbols,toassistcommunicationswithpeoplewithanintellectualdisability.Assistivetechnology,audioandlargeprintdocumentscanbeusedtocomplementinformationprovidedverballyforpeoplewithimpairedvision.
4.24 Provide information about communication aids available
Letpeopleknowhowtoaccesscommunicationaidsandadaptivetechnology. • Provideinformationaboutthecommunicationaidsyouprovideonyoursectionofthewebsite
andinyourpatientorserviceuserinformationbookletsorleaflets,wherepossible • Providesignsindicatingwhereahearingaidusercanuseaninductionloop • Placeanoticeatreceptionabouthowandwhotocontactinthehealthandsocialcareservice
sothatthestaffmembermaybookanIrishSignLanguageinterpreterinadvance
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5. Guideline Five
Accessible information
5.1 Why provide information in an accessible format?
Publicbodiesareobligedbythelegislationtoensure,asfaraspracticable,thatinformationprovidedtopeoplewithahearingimpairment,avisualimpairmentorwhohaveanintellectualdisabilityisprovidedinaformthatisaccessibletothepersonconcerned.
Itisimportanttoprovideinformationinanaccessibleformatwhichisclearandeasytounderstand.Itenablesandempowerspeopleto:
• Findtheservicestheyneed • Makeinformedchoicesanddecisions • Understandmedicalprocedures,treatmentsandafter-care;and • Avoid medication errors
5.2 Information about accessibility of premises and services
Informationaboutaccessibilityofyourpremisesandyourservicesshouldbereadilyavailableandinarangeofformatsonrequest(wherepracticable).
Provideinformationinaccessibleformats-forexample,inyourpatientinformationbookletoronyoursectionofthewebsite-aboutyourhealthandsocialcarefacility.Thefollowinginformation ishelpful:
• Detailsofthelocationofyourpremises,publictransportaccess,carpark,set-downandpick-uparrangements,andofwheretheentranceis
• Thelocationofspecificservicesandfacilities,includingreceptionandwaitingareas,andaccessibletoiletsandzoneswhichhaveanaudioloopsystem(forhearingaidusers)
• Detailsofopeninghours • Detailsofhowtomakecontactorappointments,andofanyaccessibilityarrangements,suchas,
thefacilitytomakeappointmentsviatextmessage;and • Informationaboutwhotocontactforspecificassistanceandhowtocontactthem
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5.3 Providinginformationindifferentformats
Askthepersonwithadisabilityhowshe/hewouldlikeinformationtobeprovided.Somepeoplemayneedinformationtobetransmittedinanaccessibleformat;forexample,viae-mailoratextmessageinthecaseofablindpersonwhocannotreadletterssentviapost.
Incaseswherethepatientorserviceuserwillhaveregularcontactwiththeservice,arecordiskeptofthepreferredmethodforinformationprovision.
Whenpreparingprintedinformation,suchasaleaflet,orpostinginformationtoyourwebsite,consideralsohowthiscanbeprovidedinwaysthatareaccessibletopeoplewithdisabilities.Thiscouldincludelargeprint,informationonyourwebsitethatisaccessible,EasytoRead,audio,videoorBrailleoroncolouredpaper.
5.4 Some tips on written information
Getyourkeymessagesacrosswithwritteninformationthatisclear,conciseandsimple.
Ask yourself: Who is your audience? What is your key message to them? Thefollowingguidancewillhelpalso: • WritesimplyandclearlyinplainEnglish • Keepanythingyouwriteaccurate • Avoid using jargon and technical medical language • Alwaysexplainanyabbreviations • Usingaminimumof12-pointfontindocuments(orasadvisedintheHSENationaltemplatesfor
Policies,ProceduresandGuidelines) • Providealarger-printversionforthosewhoneedthis • Aligntexttotheleft(thisisimportantasthespacingofjustifiedtextcancausedifficultiesfor
peoplewithdyslexiawhoaretryingtoassimilatetheinformation) • Provide clear headings • Highlightimportantwordsinbold.Avoidusingallcapitals,italicsorunderlining,asthismakesit
harderforpeoplewithsightdifficultiestomakeouttheshapeoftheword • Keepsentencesshort.Keeponepointtoeachsentence • Useshortparagraphs.Usebulletedlists • Havegoodcontrastbetweenthetextandbackgroundcolours.Donotusepalecolourprint • Usenon-reflectivepaper(forexample,amattfinish);and
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• Testthedocumentbeforeyougotoprinttoseeifpeoplewhouseyourservicecanunderstand iteasily
5.5 Large print
Peoplewithimpairedvisionmaybemorecomfortablewithdocumentsinlargeprint,from14pointfontandupwards.
• Largeprintversionsofkeypublicationsandinformationcanbeproducedsimplybychangingthefontsizeinyourwordprocessingsoftware
• Youcanproducelargeprintversionsofleaflets,forms,prescriptions,hospitalmenusorotherdocumentsasrequired
• Askthepersoniftheyrequireinformationinlargeprintandifthereisaparticularfontsize theyrequire
Ensurethatlinksontheinternetsitecanbeaccessedbyvisuallyimpairedpeoplewhohaveareaderontheircomputer.
5.6 Usepicturesandsymbols
Picturesandsymbolscanhelppeoplewhohaveintellectualdisabilitiesandpeoplewhohavedifficultyinreading,orindealingwithsituationsthataredifficulttodiscuss.
Accesstopicturestoexplainsymptomsmaybehelpfulinsomesettings;forexample, amobilephone.
5.7 EasytoRead
‘EasytoRead’meansprovidinginformationthroughverysimpletext,withaccompanyingpictures.Thismakesiteasierforsomepeoplewithintellectualdisabilitiesandpeoplewithliteracydifficultiestofollow.
5.8 Website
Informationonyourwebsiteshouldbeaccessibletopeoplewithsightproblemswhousetechnologytoreadtothemwhatisonthescreen.
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Somesimpleguidance: • Makeyourwebsiteeasytonavigate(easytofindtheinformationyouarelookingfor) • Structureyourdocumentsusingheadingsstylesfromyourwordprocessingpackage • Provideatextdescriptionofanyimages–howyouwoulddescribethemtosomeoneoverthe
phone • Makesurepeoplecangetalltheimportantinformationfromyourvideosandaudio,evenifthey
cannot see or cannot hear them • Provideenoughcolourcontrastbetweenwritteninformationanditsbackground;and • Itcanbehelpfultosubtitlevideoclips
TheNationalDisabilityAuthorityhasdetailedadviceonhowtomakeawebsitefullyaccessible. http://www.universaldesign.ie/useandapply/ict or http://accessit.nda.ie.Yourwebmasterandwebdevelopershouldbefamiliarwiththesestandardsandthisadvice.
• EnsureeverythingonyourwebsitemeetstherecognisedaccessibilitystandardwhichisLevelAAconformancewiththeWebContentAccessibilityGuidelines2.0
• Allyourcontent,includingwordandpdfdocuments,maps,audio,videoandhtmlcontent,should meet these standards
• Itispossibletohavetheaccessibilityofyourwebsiteindependentlychecked
5.9 Video and audio
KeepCDsorDVDsandonlinevideosoraudiosshortsothatpeoplecanfinditeasiertoabsorbandremember the information.
Provideavoice-over(audiodescription)sosomeonewithimpairedvisioncanfollowavideo.
Providesubtitles,tohelppeoplewhoarehardofhearing.
AvideoinIrishSignLanguageisagoodwaytoprovideinformationtotheDeafcommunity.
ConsiderincorporatingLámhsigns.
5.10 Braille
Brailleisawritingsystemofraiseddotsthatarereadbytouch.Withnewertechnologiesavailable,thedemandforBrailledocumentsisrelativelylow.HaveanarrangementinplacetoconvertdocumentsintoBraillewherepracticableifthisisrequested.
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5.11 Further information
Guidelines on accessible information and accessible formats
Making health information easier to understand and guidance for using plain English
Accessible information using symbols and pictures
Accessible information for Deaf or Hard of Hearing people
AccesstoInformationforAll,CitizensInformationBoard www.citizensinformationboard.ie/publications/social/social_access_info_contents.html
NationalDisabilityAuthorityguidancewww.accessibility.ie/MakeYourInformationMoreAccessible/
Forinformationonhowtowrite,prepareanddesigndocumentsinplainEnglish,see:www.simplyput.ie
MakeitEasy:aguidetopreparingeasytoreadinformationhasbeenpreparedbytheAccessibleInformationWorkingGroup,whoworkwithadultswithintellectualdisabilitiesinIreland.Available at: www.walk.ie
TheNationalAdultLiteracyAssociationhasinformation onmakinghealthinformationeasiertofollow: www.citizensinformationboard.ie/publications/social/downloads/AccessToInformationForAll.pdf
EasyInfohasresourcestohelpmakeaccessibleinformationforpeoplewithintellectualdisabilities,includingguidanceonhowtousesymbolsandpicturesandmakingdocumentsEasy-to-Read: www.easyinfoforus.org.uk
Organisationsthatprovidesymbolsinclude: • Change Picture Bank (www.changepeople.co.uk); • Photosymbols(www.photosymbols.co.uk);and • Boardmakercommunicationsymbols (www.mayer-johnson.com)
Further information Reference
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Accessible information for blind people
Accessible information for Deaf or Hard of Hearing people
Accessible information where Englishisnotafirstlanguageand translation is required
ContacttheNationalCouncilfortheBlindofIreland’smediacentreforfurtherguidanceonhowtoprovidealternatives,includingBrailleandgoodqualityaudio,forpeoplewithimpairedvision: www.ncbi.ie
TheIrishDeafSocietyhasfacilitiesforproducingsignedvideosand DVDs: www.irishdeafsociety.ie
www.lenus.ie/hse/bitstream/10147/207010/1/Lostintranslation.pdf
Further information Reference
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Accessible buildings and facilities
6.1 Generalinformation
Publicbodiesareobligedbythelegislationto“…ensurethatitspublicbuildingsare,asfaraspracticable,accessibletopersonswithdisabilities”
Peoplewithdisabilitiescanfaceparticularchallengesgettinginto,movingaroundandusingthefacilities of some buildings.
Thechallengesmaybesomewhatdifferentforpeoplewhowalkwithdifficulty,thosewhousewalkingaids,wheelchairusers,peoplewithavisualimpairment(peoplewhohavedifficultyseeingorpeoplewhoareblind),peoplewithhearingdifficultiesorpeoplewithintellectualdisabilities.Therearearangeofdifferentfeaturesthatarerequiredifabuildingistobefullyaccessible.
Buildingmanagersshouldensurethatthepremisesaredesignedtobeaccessibleandthataccessibilityismaintained.
Thoseresponsibleforcommissioningequipmentshouldensurethatthewiderangeofneedsandcircumstancesiscateredfor,includingpeoplewithdisabilities.
Askpeopleabouttheirphysicalaccessrequirementssothatanindividual’srequirementcanbemetwherepracticable.
Provideinformationaboutthephysicalaccessibilityofyourpremisesandyourservice,includingaccessibleaidsandequipment,inanypatientinformationmaterialoronyourwebsite.
DetailedtechnicalguidanceondifferentaspectsofphysicalaccessibilitycanbefoundintheNationalDisabilityAuthority’sBuildingforEveryonehttp://www.universaldesign.ie/buildingforeveryone
6. Guideline Six
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6.2 Providinginformationabouttheaccessibilityofpremisesandfacilities
Informationabouttheaccessibilityofyourpremisesandyourservicesshouldbereadilyavailableandinarangeofformatsonrequest(wherepracticable).
Provideinformationinaccessibleformats;forexample,inyourpatientinformationbooklet,oronyoursectionofthewebsiteaboutyourhealthcarefacility.Thefollowinginformationishelpful:
1. Detailsofthelocationofyourpremises,publictransportaccess,carpark,set-downandpick-uparrangements,andofwheretheentranceis.
2. Thelocationofspecificservicesandfacilities,includingreceptionandwaitingareasandaccessibletoiletsandzoneswhichhaveanaudioloopsystem(forhearingaidusers).
3. Detailsofopeninghours. 4. Detailsofhowtomakecontactorappointments,andofanyaccessibilityarrangements,suchas
thefacilitytomakeappointmentsviatextmessage. 5. Informationaboutwhotocontactforspecificassistanceandhowtocontactthem.
6.3 Pointstoconsider–Achecklistforaccessiblebuildingsandfacilities
Thefollowingtableisachecklist.Itprovidesalistwhichservicescanusetosupporttheprovisionofaccessiblebuildingsandfacilities.Itshouldbenotedthatthisisnotanexhaustivelistandcanbeaddedtoforeachareaasrequired.
Thelistdescribesastandardtoaspireto.Itiswrittenintheknowledgethatservicesmaynothavefinancialresourcestoimplementallmeasuresoutlined;however,thereisanobligationonindividualstoensurethattheyknowwhatisrequiredofthembylaw.
Points to consider A checklist for accessible buildings and facilities Yes No
General points
1. Canpeoplewithdisabilitiesgetintoyourbuildingeasily?2. Canpeoplewithdisabilitiesmovearoundthebuildingeasily,andfindtheirwayto
wheretheyneedtogo?3. Canyouevacuatepeoplewithdisabilitiessafelyinanemergency?4. IsthereawarningsysteminplaceforDeafpeoplewhocannothearanyalarms?
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A checklist for accessible buildings and facilities Yes No
5. ArethereaccessibleWCswherepeopleneedthem?6. Isyourfurnitureandequipmentsuitableforpeoplewithdisabilities?7. Haveyousystemsinplacetoensureaccessibilityofyourpremisesandfacilities
ismaintained?
Entrance and approach
8. Isthereaset-downandpick-uppointthatisclearlysign-postedclosetotheentrancetothebuilding?
9. Arethereaccessibleparkingbaysclosetotheentrance?10. Isthereoneormoreparkingmeterorpaymentmachinewhichcanbeoperated
whenseated?11. Isthereanunobstructedroutefromparkingorpublictransporttotheentrance?12. Isthereanon-slippathwaywithdishedkerbsandwithtactilesurfacesat
crossingpoints?13. Istherealevelstep-freeentrancetothebuilding?Otherwise,thereshouldbe
bothstepsandagentlerampattheentrancewithcontinuoushandrails.Acontrastintextureofthepavingwillletsomeonewithavisualimpairmentknowtheyareattheentrance.
14. Arerampsnosteeperthan1:20,andpreferablynolongerthan10meters?15. Arestepsnon-slipandmarkedalongtheedges?Isthereclear,well-litsignage
withgoodcolourcontrast?16. Aretheentrancedoorseasytoopenordotheyopenautomatically?17. Ifthereisadoublesetofdoorstominimisedraughtsatanentrance,isthere
enoughspacebetweentheouterandinnerdoorsforsomeonewithlimitedmobilityorawheelchairusertonegotiate?
18. Aredoorhandlesvisibleandeasytouseandataheightwhichawheelchairusercanaccess?
19. Ifthedoordoesnothaveaself-lockingdevice,aretherepull-handlestoclose thedoor?
20. Aretheredoorentrycontrolsystems,suchasintercoms,wherenecessarythathavefeaturesthatworkforpeoplewhohavevisionorhearingimpairments?
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A checklist for accessible buildings and facilities Yes No
21. Isthereadesignatedareaoutsideforaguidedogtorelievehimself? Foyer,receptionandwaitingareas 22. Isthereclearsignageshowingwheretofinddifferentservicesandfacilities?23. Isthereceptiondeskclosetotheentranceandinalocationtominimiseinternal
andexternalnoise?24. Isthereatwo-tierheightreceptiondeskthatcanserveboththosewhoare
standingandthosewhoareseated(includingwheelchairusers)withadequatekneespace?
25. Isthereachairatthereceptiondeskforthepersonmakinginquiries?26. Isthereasuitable-heightsurfaceforsigninganyforms?27. Istherealoopsystematreceptiondeskstofacilitatethosewithhearingaids?28. Isthereaportableloopsothataserviceusercantakealoopfromoneroom
toanother?29. Istheregoodlightingonthereceptionist’sfacetofacilitatelip-reading?Avoid
lightingbehindthereceptionistwherepossible.30. Isthereadequatespaceforbothmanualandpoweredwheelchairstoenterand
turnaround?31. Isthereadequateseatinginanywaitingarea?Wherepossible,providesome
witharmreststhatareeasiertostandupfrom.32. Doesthelayoutoftheseatingenableawheelchairusertositbeside
acompanion?33. Arewrittennoticesinlargeprint,inacleartypeface,withgoodcolourcontrast
andonamattbackgroundtoreduceglare?34. Areleafletdisplaystandsaccessibletopeoplewhoarestandingorwho
usewheelchairs?35. Canpeoplewithlimiteddexteritytakealeafletfromaleafletdisplaystandeasily?36. Istherespaceforaguidedogclosetotheseatinginwaitingareasandawater
bowlifrequired?
General areas and circulation
37. Aretherenon-slipfloorsurfacesthataredry,well-maintainedandeasytousebysomeoneoncrutches,withawalkingaidorinawheelchair?
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A checklist for accessible buildings and facilities Yes No
38. Aretherecontrastsincolourandtextureforfloorcoveringstodefinedifferentareasofthebuildingortomarkaroute?
39. Aredoorways,corridorsandcirculationspaceswideenoughforpoweredormanualwheelchairuserstonavigateandturn?
40. Arecorridors,waitingroomsorwardsfreeofanyobstaclesthatcouldrestrictmobilityorcauseinjury?Checkthattrolleys,cleaningequipmentorwall-mountedobjectslikefireextinguishersorothermaterialsdonotprotrudeand/orarenotplacedwheretheycouldbeanobstructionorahazard.
41. Aretherehandrailsandseatinginallwaitingareasandalongcirculationroutestoenableapersonwithawalkingdifficulty,apersonwhohasbalancedifficultiesorapersonexperiencingchronicpaintogetaroundthebuildingandtakeabreakiftheyneedit?
42. Aretherehandrailswheretherearechangesinfloorlevelsandwheretherearestepsorramps?
43. Isthereaglazedvisionpanelsondoorssothatonecanseewhatisbeyond thedoor?
44. Aretheremarkingsonglassdoorssothattheycanbeclearlyseen?45. Aretheedgesofanystepsmarkedsothattheyarevisible?46. Isthereanalternativeforthosewhocannotusesteps,suchasaliftoraramp?47. Areallcontrols,suchasliftcontrols,doorhandlesorswitches,ataheightwhich
peoplewhoareseatedorstandingcanuse?48. Istheliftatalkingliftthatspecifieswhichflooryouareon?49. Isthereaminimumclearopeningof900mminthelift?50. Arethecontrolsintheliftaccessible?51. Istheregoodlighting,withoutglare?52. Canawheelchairuserpositionthemselvesalongsideanyseatingtoenablea
companiontotakearest?53. Istheresufficientspaceforawheelchairusertoaccessandgrabrailsinkeyparts
ofthebuilding,suchasalongcorridors,alongsiderampsandintoilets?
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A checklist for accessible buildings and facilities Yes No
Toilet facilities
54. Aretoiletfacilitiesaccessible?Theseshouldbelargeenoughapersonusingapoweredwheelchairtouse.
Fortechnicaldetails,seeBook5(SanitaryServices)in“BuildingforEveryone”:www.universaldesign.ie/buildingforeveryone
55. Isthereanaccessibletoiletneartheexaminationroomsothatapersoncangive aurinespecimen,ifrequired?
56. Aredoorhandles,wash-handbasins,tapsandthetoiletfullyaccessible? Doorhandlesandtapsshouldbeusablebypeoplewithrestricteddexterity.
57. Arethereappropriatelyplacedgrabrailsandaccessiblehandlesforentry andexit?
58. Areaccessibletoiletsmaintainedandrepairedpromptlyifoutoforder?Accessible toilets should be maintained free of obstruction and not used as a storage area for cleaning or other materials.
Consulting and treatment rooms
59. Indesigningandbuildingtreatmentrooms,havetherelevantprofessionalstakenaccountoftheacousticpropertiesofroomswhereconsultationstakeplace?Choosematerialsthatdampensound.Avoidnoisyventilationorairconditioningsystemsthatcanmakeitdifficultforapersontohear.
60. Aretreatmentroomsofasufficientsizetoenableamanualorpoweredwheelchairusertoturn?
61. Canthetreatmentroomaccommodatealiftinghoisttoenableapersontotransfersafelyandcomfortablyontoanexaminationortreatmenttableorchair?
62. Areexaminationcouchescentrallylocatedwithaccessfrombothsides(orcantheybemovedeasilysothattheyare)?Aretheyheight-adjustablesothatapersoncanbeexaminedinarangeofpositions-lying,standingorseated?
63. Isdiagnosticequipment,suchasamammographymachine,capableofbeingaccessedbyapersoninaseatedposition?
64. Arehandgripsprovidedtohelppeoplewithmobilityorvisionimpairmentstohavesupportwhenstandingbesideadiagnosticmachineoronweighingscales?
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A checklist for accessible buildings and facilities Yes No
65. Arethereaccessibleweighingmachinessothatpeoplewhoarenotabletostandontheweighingscalecanbeweighedsafelyandcomfortably?Forexample,thereshouldalsobeaccessibleweighingscalesthatallowindividualstobeweighedinawheelchair.
66. Isatleastonedressingroomaccessibletomanualandpoweredwheelchairusersandpeoplewithlimitedmobility?Aretherehandgripsandseatinginthedressingroomandacallbellifapersonrequiresassistance?
67. Atleastoneconsultationortreatmentroomshouldhaveahearingloopsystemavailableforapersonwhoisahearingaiduser.Provisionshouldalsobemadeforaportableloopsystemtobeavailableifapersonisrequiredtomovebetweenconsultationortreatmentrooms.
Hospital wards
68. Arethereaccessibleandautomaticheight-adjustablebedsavailableifaserviceuserneedsone?
69. Arehoistsandmonkeypolesavailabletoenablepeoplebeliftedortoliftthemselves,inparticulartoenabletransferbetweenbedandbathroomorintoandoutofabedsidechair?
70. Istheresufficientspacearoundabedforamanualandpoweredwheelchairusertoturnbesideabed?
71. Isthereafullyaccessibletoiletandbathroomadjacenttotheward,withachoiceofshowerorbathfacilitiesandwithsuitablehoistsavailableasrequired?
72. Isthereasingleroomavailableonallwards,whichcanhelpinfectioncontroloroffermoreprivacyorquietforthosewhorequireitbecauseoftheirillnessordisability,wherepossible?Somedisabilitiesmayresultinapersonbeinguncomfortableorfinditdifficulttocommunicateinanoisyorbrightenvironment.
73. Istherearangeofchairsinthedayroomtosuitpeoplewithlimitedmobilityandwitharmreststoassistthemwhentheygotostand?
74. Istheenvironmentfreeofobstaclesorhazards?75. Isthereatelevisionprovided?Ifyes,istheoptionofsubtitlesavailable?
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A checklist for accessible buildings and facilities Yes No
Signs and notices
76. Isthereaclearway-findingsystemaroundthebuilding?77. Isthereclearsignageatanappropriateheightabovefloorlevel?78. Arethesignsmadefromamaterialthatdoesnotreflectlight?Glarecanmake
themdifficulttoread.79. IsplainEnglishusedinsignsandnotices?80. Dothesignsuseclearandconsistentlanguageandimages?81. Isthereacolourcontrastbetweenletteringandbackgroundoninformation
noticesandsigns?82. Arepicturesignsandsymbolsusedthatcanbereadilyunderstoodbyall;for
example,peoplewithliteracydifficulties,peoplewithintellectualdisabilitiesandpeoplewhodonotreadEnglish?
83. Isthereanoticewhereyouhaveahearingloop?84. Arenoticesinaminimumof18ptfont?Dotheyuselargesymbolswitha
combinationofupperandlowercaselettering?85. Dosignsmeettherecommendedguidelines?SeetheHSESignagePolicy2005
for more information.
• Internal signs: - Therecommendedsizeforinternallocationidentificationanddirectionalsigns
isatleast60mmheightandviewingdistanceupto20metres(m) - Therecommendedheightofasignisbetween1300-1600mmabove
floorlevel - Theheightofthesignsshouldbechosenforcomfortinreading;thatis,as
closetoeyelevelaspossibleforinternalsignsandexternalpedestriansigns.Ingeneral,eyelevelisconsideredtobeapproximately1500mmfromground.ThisisalsotherecommendedheightfortactileandBraillesigns.(NationalCouncilfortheBlindofIreland–RecommendationsforSignage)
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A checklist for accessible buildings and facilities Yes No
• External signs: - Externallocationidentificationandmotoristdirectionalsignsshouldbe90mm
highandlegiblefromapproximately45m - Wherepossible,provideBrailleorraisedletteringsothatpeoplewithimpaired
visioncanreadthembytouch
Safe evacuation
86. Isthereanappropriateplaninplaceforthesafeevacuationofeveryone,includingpeoplewithdisabilities,inthecaseofanemergency?
87. IsthefirealarmbothaudibleandvisiblesotheycanbeperceivedbypeoplewhoareDeaforhardofhearing?
Compliance with Part M of the BuildingRegulations
Guidance on accessible buildings
Guidelines on designing accessible environments
TheDepartmentofEnvironment’sTechnicalGuidanceDocument: www.environ.ie/en/Publications/DevelopmentandHousing/BuildingStandards/FileDownLoad,24773,en.pdf
TheNationalDisabilityAuthority’sBuildingforEveryone:www.universaldesign.ie/buildingforeveryone
TheIrishWheelchairAssociationhavedevelopedBestPracticeAccessGuidelines-DesigningAccessibleEnvironments,followingextensiveconsultationwiththeirmembersandexternalorganisations:www.iwa.ie/services/housing/iwa-housing-advocacy/designing-accessible-environments
6.4 Furtherinformation
Further information Reference
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Guidance on safe evacuation TheNationalDisabilityAuthorityGuidanceonSafeEvacuationfor All. www.nda.ie/Website/NDA/CntMgmtNew.nsf/0/BC5E9F0E705C006C8025784F003B42EE/$File/Safe_Evacuation_for_All.pdf
Further information Reference
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Consent
“Consentisthegivingofpermissionoragreementforanintervention,receiptoruseofaserviceorparticipationinresearchfollowingaprocessofcommunicationinwhichtheserviceuserhasreceivedsufficientinformationtoenablehim/hertounderstandthenature,potentialrisksandbenefitsoftheproposedinterventionorservice.”
National Consent Policy, HSE, May 2013
Pleasenote,thefollowingsection“Guideline Seven: Consent”shouldbereadinconjunctionwiththeNationalConsentPolicy,HSEwhichisavailableonwww.hse.ie. These guidelines are also subjecttochangependingforthcominglegislation.
7.1 General Principles of Consent
Theneedforconsentextendstoallhealthandsocialcareinterventionsconductedbyoronbehalfofhealthandsocialcareservicesonpatientsandserviceusersinalllocations(forexample,hospitals,community,residentialcaresettings).
Itisabasicruleatcommonlawthatconsentmustbeobtainedformedicalexamination,treatment,serviceorinvestigation.Consentmustalsobesoughtforapersontotakepartinahealthandsocialcareserviceresearchproject.
Therefore,otherthaninexceptionalcircumstances,treatingserviceuserswithouttheirconsentisaviolationoftheirlegalandconstitutionalrightsandmayresultincivilorcriminalproceedingsbeingtakenbytheserviceuser.
No other person such as a family member, friend or carer and no organisation can give or refuse consent to a health or social care service on behalf of an adult service user who lacks capacitytoconsentunlesstheyhavespecificlegalauthoritytodoso.
7.2 What is valid and genuine consent?
Consentisthegivingofpermissionoragreementforanintervention,receiptoruseofaserviceor
7. Guideline Seven
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participationinresearchfollowingaprocessofcommunicationabouttheproposedintervention.Theprocessofcommunicationbeginsattheinitialcontactandcontinuesthroughtotheendoftheserviceuser’sinvolvementinthetreatmentprocess,provisionofsocialcareorresearchstudy.Seekingconsentisnotmerelygettingaconsentformsigned;theconsentformisjustonemeansofdocumentingthataprocessofcommunicationhasoccurred.
Thehealthcareworkershouldaimtomaximizethecapacityoftheserviceuserasfaraspossibletoprovideorrefuseconsent.Gettingconsentisaprocessinvolvingeffectivecommunicationbetweentheserviceuserandhealthcareprofessional.Theprovisionofappropriateandaccessibleinformationtotheserviceuserwillbecriticalinfacilitatingandsupportingthemtomakeaninformedchoice.Insomesituations,involvinganappropriatethirdpartytofacilitatetheexchangeofinformationandcommunicationbetweenthehealthcareprofessionalandserviceuserwillbenecessary(forexample,wheretheserviceuserisnon-verbalorrequiressignlanguageinterpretation).
Fortheconsenttobevalid,theserviceusermust: • Havereceivedsufficientinformationinacomprehensibleandaccessiblemanner(inawaythat
theycanunderstand)aboutthenature,purpose,benefitsandrisksofanintervention/serviceorresearchproject(forexample,proposedtreatment,diagnosticprocedure)
• Notbeactingunderduress,and • Havethecapacitytomaketheparticulardecision
7.3 Importance of individual circumstances
Howmuchinformationserviceuserswantandrequirewillvarydependingontheirindividualcircumstances.Discussionswithserviceusersshouldasmuchaspossiblebetailoredaccordingto:
• Theirneeds,wishesandpriorities • Theirlevelofknowledgeabout,andunderstandingof,theircondition,prognosisandthe
treatmentoptions • Theirabilitytounderstandtheinformationprovided/languageused • The nature of their condition
7.4 Informing the person before getting consent
Theamountofinformationtobeprovidedaboutaninterventionwilldependontheurgency,complexity,natureandlevelofriskassociatedwiththeintervention.
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Itisimportantto: • Communicateandprovideinformationatalevelandinaformatwhichisappropriatetothe
needsofeachpatientorserviceuser.(SeeGuideline Four: Communication for guidance and Guideline Five: Accessible information for guidance respectively)
• Investthetimeandeffortneededtoensurethatpatientsorserviceusers: • understandthenatureoftheprocedureortreatment • understandtheconsequencesofrefusingtreatment • have enough information to make an informed decision • haveanopportunitytoaskquestionsabouttheirconditionandtheprocedureortreatment
Informationaboutriskshouldbegiveninabalancedway.Serviceusersmayunderstandinformationaboutriskdifferentlyfromthoseprovidinghealthandsocialcare.Thisisparticularlytruewhenusingdescriptivetermssuchas‘often’or‘uncommon’.Potentialbiasesrelatedtohowrisksare‘framed’areimportant:a1inathousandriskofacomplicationalsomeansthat999outofathousandserviceuserswillnotexperiencethatcomplication.
Inordertobestsupportserviceusersinassessingtheriskandbenefitsofvariousinterventions/courseofactionconsiderationshouldbegiventoprovidingtheinformationinanaccessibleandunderstandableformatusingplainlanguage.
7.5 How and when information should be provided
Themannerinwhichthehealthandsocialcareoptionsarediscussedwithaserviceuserisasimportantastheinformationitself.Thefollowingmeasuresareoftenhelpful:
• Discussingtreatmentoptionsinaplaceandatatimewhentheserviceuserisbestabletounderstandandretaintheinformation.Sensitiveissuesshouldbediscussedinanappropriatelocationtoensurethattheserviceuser’sprivacyisprotectedtothegreatestdegreepossibleinthe circumstances
• Providingadequatetimeandsupport,including,ifnecessary,repeatinginformation • Useofsimple,clearandconciseEnglishandavoidanceofmedicalterminologywherepossible • Supplementingwrittenorverbalinformationwithvisualdepictions,forexample,pictures • Askingtheserviceuserifthereisanythingthatwouldhelpthemrememberinformation,ormake
iteasiertomakeadecision;suchasbringingarelative,partner,friend,careroradvocatetoconsultations
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Serviceusersshouldbegiventhetimeandsupporttheyneedtomaximisetheirabilitytomakedecisionsforthemselves.Itisparticularlyimportanttoensurethisisthecaseforthosewithlimitedliteracyskillsorwhomaylackcapacityduetoacondition.However,itshouldnotbeautomaticallyassumedthatserviceuserswithcertaintypeofdisabilities(forexample,intellectual,cognitive,communicationdifficulties)lackcapacitytounderstandinformationormakeadecision.Aperson’scapacitycanbeimprovedandmaximisedwithappropriateandaccessibleinformationandsupportssoallpracticablestepsshouldbetakeninthisregard.
Forthosewithcommunicationdifficulties,speakingtothoseclosetotheserviceuser,toanadvocate,apersonalassistantortootherhealthandsocialcarestaffaboutthebestwaysofcommunicatingwiththeserviceuser,takingaccountofconfidentialityissues,maybehelpful.Forexample,additionalmeasuresmayberequiredforpeoplewithlimitedEnglishproficiency,peoplewhoaredeafandhardofhearingandblindandvisuallyimpairedserviceusers.
7.6 Howshouldconsentbedocumented?
Itisessentialforthosewhoprovidehealthandsocialcare,todocumentclearlyarecordofboththeserviceusers’agreementtotheinterventionandthediscussionsthatleduptothatagreementif:
• Theinterventionisinvasive,complexorinvolvessignificantrisks • Theremaybesignificantconsequencesfortheserviceuser’semployment,orsocialor
personallife • Providingclinicalcareisnottheprimarypurposeoftheintervention,forexample,clinical
photographsorvideocliptobeusedforteachingpurposesorbloodtestingfollowingneedlestickinjurytostaff
• Theinterventionisinnovativeorexperimental,or • Inanyothersituationthattheserviceproviderconsidersappropriate
Thismaybedoneeitherthroughtheuseofaconsentformorthroughdocumentingintheserviceuser’snotesthattheyhavegivenverbaland/ornonverbalconsent.
Ifaconsentformisusedandtheserviceuserisunabletowrite,amarkontheformtoindicateconsentissufficient.Itisgoodpracticeforthemarktobewitnessedbyapersonotherthantheclinician seeking consent and for the fact that the service user has chosen to make their mark in this waytoberecordedinthehealthcarerecord.
Writtenconsentformsshouldbeclearandeasytounderstand.
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7.7 Capacity to consent
Has the service user the capacity to make the decision? Bestpracticeandinternationalhumanrightsstandardsoperatefromthepresumptionthatall
adultserviceusershavecapacitywhenmakingdecisionsunlessthecontraryisshownandalladultserviceusersshallnotbeconsideredasunabletomakeadecisioninrespectofthematterconcernedunlessallpracticablestepshavebeentaken,withoutsuccess,tohelpthepersonto do so.12
Wherethedecision-makingcapacityoftheserviceusermaybeindoubt,bestpracticefavoursa‘functional’orissue-specificapproachtodefiningdecision-makingcapacity.Accordingtothis,theserviceuser’scapacityistobejudgedinrelationtoaparticulardecisiontobemade,atthetimeitistobemade-inotherwords,itshouldbeissuespecificandtimespecific–anddependsupontheabilityofanindividualtounderstand,retainandtouseorweighthatinformationaspartoftheprocessofmakingthedecision.Theserviceusermustalsobeabletocommunicatethedecisionbyanymeans(forexample,usingsignlanguage,assistivetechnology)tothehealthcareprofessional.
Duty to maximise capacity Bestpracticeandinternationalhumanrightsstandardsfavour“supporteddecision-making”where
possible.Thisrequiresthatallpracticablestepsmustbetakentomaximisetheserviceuser’sdecisionmakingcapacitytoallowthemtomaketheirowndecisionswherepossible.
Mostserviceuserswillbeabletomakesomedecisions,butmayfinditdifficulttomakeother
decisionswhichmay,forexample,bemorecomplexandinvolvechoosingbetweenanumberofoptions.Fluctuationsinaperson’sconditionsuchasconfusion,panic,shock,fatigue,painormedicationmaytemporarilyaffecttheperson’sdecisionmakingcapacitysoasfaraspossible,seekingconsentshouldbedelayeduntilthepersonhasregainedcapacitytodoso.
Itisimportanttogivethosewhomayhavedifficultymakingdecisionsthetimeandsupporttheyneedtomaximisetheirabilitytomakedecisionsforthemselves.
For further information on assessing capacity see the National Consent Policy and forthcoming legislation.
12SeeAssistedDecisionMaking(Capacity)Bill2013
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7.8 Emergency situations with service users who lack capacity
Inanemergencysituationwhereaserviceuserisassessedtolackcapacity,thehealthandsocialcareprofessionalmaytreattheserviceuserprovidedthetreatmentisimmediatelynecessarytosavetheirlifeortopreventaseriousdeteriorationoftheirconditionandthatthereisnovalidadvancerefusaloftreatment.Thetreatmentprovidedshouldbetheleastrestrictiveoftheserviceuser’sfuturechoices
Whileitisgoodpracticetoinformthoseclosetotheserviceuser–andtheymaybeabletoprovideinsightintotheserviceuser’swillandpreferences-nobodyelsecanconsentonbehalfoftheservice user in this situation.
For further information see the National Consent Policy.
7.9 Consent, Children and Young People
Bestpracticeandinternationalhumanrightsstandardsfavouranapproachwhichprovidesthatachild’soryoungperson’swishesaretakenintoaccountand,asthechildgrowstowardsmaturity,givenmoreweightaccordingly.Wherechildrenareunabletogiveavalidconsentforthemselvesowingtothelegalageofconsent,theyshouldnonethelessbeasinvolvedasmuchaspossibleindecision‐makingaschildrenmayhaveopinionsabouttheirhealthcareandhavetherighttohavetheirviewstakenintoconsiderationbygivingtheirassenttotheproposedtreatmentorservice.
For more detailed information see the National Consent Policywhichalsoaddressestheissueofwhenitmaybenecessarytoobtaintheconsentofbothparents/guardiansand/orwhentheconsentofoneissufficient.
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8. Guideline Eight
Role of family members and support persons
8.1 Roleoffamilymembersandsupportpersons
Familymembersandothersupportpersonsoftenplayacriticalroleinenablingaccesstohealthandsocialcareforpeoplewithdisabilities,navigatingthehealthandsocialcaresystemwiththemandsupportingthemwhileinhospitalorinotherhealthandsocialcarefacilities.
Ifapersonwithadisabilitydoesnotwanttobeaccompaniedbyacarerorfamilymember,thisshouldberespected.
Thefamilymember,carerorsupportpersonwillgenerallyunderstandtheperson’sdisabilityandcanprovideinformationandinsightsintoaperson’saccessibilityrequirements.Thisisimportantwherepeoplewithdisabilitiesareunabletocommunicatetheirrequirementseasily.Staffshouldbeawareoftheirimportantroleandfacilitateit.
Aninterpretermaybenecessaryiftheprimarycareroradvocateofapatient/serviceuserisDeaf;forexample,Deafparentswithachildwhocanhear.Whiletheonusisontheserviceusertorequestaninterpreter,itistheresponsibilityofstafftomakethearrangements.Itisconsideredgoodpracticeforservicestoarrangeaninterpreterwithoutbeingpromptedincaseswhererepeatvisitsarenecessaryorwhereitisknowninadvancethattheserviceuserneedsone.
Collaborationbetweenfamilycarersorothersupportpersonsandhealthandsocialcarestaffcanhelptoensurethatthebasicneedsandaccessibilityorcommunicationrequirementsofapatientwithadisabilityaremet.
Familyorothercaresupportpersonsmaybeabletoprovideassistancewithactivitiesofdailyliving(suchasassistingthepersontoeatordrink,dressorundress,movearound,orusethetoilet)wherethisisrequiredandiswhatapersonwithdisabilitywishes.However,familycarersandothersupportpersonsshouldneverbeusedtoreplacegeneralnursingormedicalcarestaff.
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8.2 Righttoprivacy
Peoplewithdisabilitieshavethesamerighttoprivacyandconfidentialityasanyotherperson. The National Healthcare Charter, You and Your Health Servicestatesthateveryonehastherighttohavetheirprivacyrespectedandthat,asstaff,“Wewilldoourbesttoensurethatyouhaveadequatepersonalspaceandprivacywhenyouuseourhealthservices.Wemaintainstrictconfidentialityofpersonalinformation”.
8.3 Discharge
See “Guideline Three: Accessible services - general advice, Section 3.14, Integrated Discharge Planning”,formoreinformationondischargeplanning.Alsosee“Integratedcareguidance:Apracticalguidetodischargeandtransferfromhospital”.
Makeaplanforcontinuityofcareandsupportafterdischarge.Ondischargefromhospital,those
playingasignificantcaringandsupportroletothepersonwithadisability,includingtheGP,shouldalsobeinformedaboutandunderstandtheperson’smedicalanddrugregime,anyspecificissuesofcaremanagement,andunderwhatconditionsthepersonmayneedtoreturntothehospital.Whereappropriate,maketimetodiscussadiagnosisandtreatmentplanwithfamilymembers,carerorsupportperson.
8.4 Carer needs
Familycarersmaythemselvesbeelderlyorfrailandmayhavedifficultiesinprovidingphysicalassistance.Healthcarestaffshouldbealertforsignsofdistressinthecarerandlimitsonassistancetheywouldbeabletoprovidetothepatient.Staffmaybeabletoadvisethepersonortheirfamilyaboutimportantsourcesofsupportandwherefurtherinformationisavailable.
Healthcarestaffinpolicyandmanagementpositionscangiveconsiderationonsupportswhich
mightbeofferedtorelativeswhoneedtovisithospitalsorhealthcentresfrequently. 8.5 Advocacy
Anindependentadvocatecanrepresenttheinterestsofvulnerablepeopleandplayaroleinassistingpeoplethemtoaccessservices,rightsandentitlements.Anadvocatecanhelp themtoidentifyandarticulateaccessibilityrequirementsandassisttheminmakingchoices. Wherethissupportisindicated,healthstaffshouldfacilitateapersonwithadisabilitytoaccess anindependentadvocate.
Anyformofadvocacyusedmustbeagreeabletoboththeserviceuserandthehealthandsocialcare service.
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Guidelines for specific services
Theguidelinesdescribeastandardwhichwecanaspireto.Theyarewrittenintheknowledgethatservicesmaynothavefinancialresourcestoimplementallmeasuresoutlined;however,thereisanobligationonindividualstoensurethattheyknowwhatisrequiredofthembylaw.Theyalsoserveasaresourceforhealthandsocialcareprofessionalswhomaybeplanningservicesinthefuture.
Manyofthekeyinitiativesyoucantaketomakeservicesmoreaccessiblearecostneutral.Consideration,compassionandopencommunicationarefree.Timespentidentifyingaperson’sneedsisaninvestmentinsafe,effectivecarewhichcanpreventunnecessaryriskstotheindividualandthestaffmember.
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Part Two
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Accessible GP surgeries, health care centres and primary care centres
ThefollowingsectionshouldbereadinconjunctionwithPartOne: Guideline Three: Accessible services - general advice Guideline Four: Communication Guideline Five: Accessible information Guideline Six: Accessible buildings and facilities Guideline Seven: Consent Guideline Eight: Roleoffamilymembersandsupportpersons
9.1 Plan services for all
Peoplewithdisabilitiesaremorelikelytodrawonprimarycaresupportaswhiletheyenjoygeneralgoodhealth;onaverage,theyhavepoorerhealththanthepopulationatlarge.
Primarycareplaysacriticalroleinsupportingpeoplewithdisabilitiesandchronicconditionstomanagetheircondition,recoverafteranillnessandstaywell.
Itisessentialthatprimarycareservicesareplannedanddeliveredsothattheyareaccessibletoallpatientsandserviceusers.
Theuptakeofpreventativescreeningprogrammesisoftenverypoorbypatientsandserviceuserswithamentalhealthillnessordisability.Researchalsoshowsthatpeoplewithintellectualdisabilitieswhoarelivinginthecommunityarelesslikelytoaccessprimarycarethanothermembersofthepopulation.
ThefollowingtableincludesaGeneralPointsChecklisttohelpstaffandservicesidentifyiftheirservices are accessible.
9. Guideline Nine
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Whenreadingthetablesinthefollowingsections,pleasenotethattheguidelinesdescribeastandardwhichwecanaspireto.Theyarewrittenintheknowledgethatservicesmaynothavefinancialresourcestoimplementallmeasuresoutlined;however,thereisanobligationonindividualstoensurethattheyknowwhatisrequiredofthembylaw.Theyalsoserveasaresourceforhealthandsocialcareprofessionalswhomaybeplanningservicesinthefuture.
Top Tips
• ApositivemeasureintroducedintheUKhasbeenanautomaticannualcheck-upforpatientswithanintellectualdisability–thisisconsideredgoodpractice.
• Ensurepreventiveandscreeningprogrammesaredesignedtobeaccessibletoandinclusiveofpeoplewithdisabilitieswhereappropriate;forexample,mammograms,cervicalsmears,fluvaccinationsetc.
9.2 Your premises
Thefollowingtableisachecklistwhichwillhelpstaffidentifyiftheirpremisesareaccessible.Itshouldbenotedthatthisisnotanexhaustivelistandcanbeaddedtoasrequired.Moreinformation is available in Guideline Six: Accessible buildings and facilities.
General points Yes No
1. Arethepremisesandequipmentaccessibletopeoplewithdisabilities?2. Isinformationandcommunicationtailoredtoparticularrequirementspeoplewith
disabilitiesmayhave?3. Areinvestigations,treatmentsandprescribedexercisestailoredtomeettheneeds
ofpeoplewithdisabilities?4. Isapersonwithadisabilitytreatedonthebasisoftheclinicalconditionthey
presentwith?Therecanbeariskthatsymptomsofanillnessareattributedtotheperson’sdisabilityratherthantoanothercondition.
5. Dopeoplewithintellectualdisabilitiesinyourcommunityaccessprimarycare?6. Arepeoplewithdisabilitiesactivelyincludedinpreventiveandscreening
programmes?7. Woulditbehelpfultokeeparegisterofpatientswithdisabilitiestoenableauditof
theircare?
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Points to consider A checklist for your premises Yes No
General points
1. Isyourpremisesphysicallyaccessibletopeoplewithdisabilities?2. Isthereanalternativeforpatientswhohavedifficultiesinnegotiatingstairs;for
example,thattheycanbeseeninadownstairsconsultingroom?3. Isthereaccessibleparkingclosetotheentrance?4. Isthereapathwayfromtheentrancetotheparkingarea?5. Isthemainroadfreefromobstructionsorsteps?6. Isthereclearexternalandinternalsignagewithlargewell-litsignssothatpeople
canfindtheirwayeasilytothebuildingandaroundthebuilding?7. IfyouhaveanintercomsystemattheentrancetotheGPsurgeryorhealthcentre,
isitusablebysomeoneseatedinawheelchair,bysomeonewhohasavisualimpairmentandbysomeonewhoishardofhearingorDeaf?
8. Istherearampiftheentranceisnotlevel?Wheelchairuserscannotnegotiatesteps,whereaspeoplewhowalkbutwithsomedifficultygenerallypreferasmallnumberofstepstoaramp.
9. Isthereahandrailtoassistpeoplewhoarenotsteadyontheirfeet?10. Isthereahearingloop?Ifso,arepeoplewhousehearingaidsroutinelyinformed
thatitisavailable?Alternatively,consideraportablehearinglooporlisteningdevice that can be taken from one treatment room to another.
11. Isthereanaccessibletoiletlocatedattheentrancelevelandsignposted?12. Isthereceptionistdeskataheightwheresomeonewhoisseatedcantransact
theirbusiness? • Isitpossibletoputachairatthereceptiondeskforsomeonewhohasa
walkingdifficultytositdown,ifneeded? • Whenapersonisseated,dotheyhaveanunblockedviewofthereceptionist?13. Istheresufficientspaceinthewaitingroomforawheelchairusertoturnaround,
andalsosothatthepersoncansitinthemainwaitingareanexttoaseatedcompanion?
14. Ifyourpremisesisnotphysicallyaccessibletosomeone,areyoupreparedtoarrangeanappropriatealternative;forexample,provideahomevisit?
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Top Tips
• Ifthereisnofixedramp,servicesmightconsiderifitispossibletoprovideamobileramporprovidetheoptionofbothstepsandaramp
• Ifthereisaloopsystemoraportablelisteningdevice,checkthatitistestedregularlyandthatstaffknowhowtouseit
9.3 Appointments, opening hours, waiting rooms
See Guideline Three: Accessible services - general advice for more information on making appointments.
Pleasenotethatthefollowingsectiondoesnotmeanthatpreferentialtreatmentwillbegiventopeoplewithdisabilities,butratherthatservicesshouldexerciseconsiderationforthecircumstancesofacasewhereappropriate.
• Wherepossible,beflexibleinmakingappointments,takingintoconsiderationthatsomepeoplewithdisabilitieshavedifficultieswithearlymorningappointmentsbecauseofmedicationortheadditionaltimeneededtogetready
• Wherepossible,beflexibleaboutsurgery/healthcentreopeninghourstoenableafamilymember,personalassistantorsupportpersontoaccompanypeoplewithdisabilitiestoattend anappointment
• Somepeoplewithdisabilitiesmaygetagitated(forexample,inanunfamiliarenvironment)orfinditdifficulttoremaininoneplaceforlong.Forthesepatients,considerappointmenttimesthatmayminimisewaitingtimes;forexample,thefirstappointmentafterlunch
• Ifappointmentscanbemadebytextmessageoremail,ensurethereisatwo-wayprocesssothatapersoncanrespondtoatextmessageoremail,andcancelorchangeanappointmentif
A checklist for your premises Yes No
15. Inthecaseofanemergency,isthereanappropriateplaninplaceforthesafeevacuationofeveryone?Hasconsiderationbeengiventosafeevacuationofthosewithdisabilities;forexample,peoplewhoareDeaf,blind,hardofhearingorwhohavemobilityissues?
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necessary.Itisimportantthatreceptionstaffrespondtotextmessagesandemailsinatimelyway.Letpeopleknowofalternativemethodsofcommunication;forexample,includeanumbertotextonpublicitymaterialandheadedpaper
• Peoplewithdisabilitiesmayrequiremoretimethanthestandardconsultingappointment(forexample,toallowforadditionaltimetointerpretsignlanguage)andconsiderationshouldbegiventobookingalongerappointmentordoubleappointment
• Itcanbehelpfultoscheduleappointmentswithaninterpretersothatwaitingtimesandcostofinterpretiveservicesareminimised
9.4 Waiting to be seen
Formoreinformation,seeGuideline Three: Accessible services - general advice. VisualDisplayUnitsinwaitingroomsandpublicareascaninformpeopleofappointments,
directions,informationorqueuinginformation.Avisualsystemcouldbeaticketmachine,avisualdisplayorawhiteboard.
Ifpossible,havebothanaudibleandvisualsystemforlettingpeopleknowtheirturn.ThisistoensurethatpeoplewithimpairedvisionandpeoplewhoarehardofhearingorDeafareawarethattheyarebeingcalledfortheirturn.
Ifyouuseaticketsystemforthequeue,ensurethattheticketmachineisataheightwhereawheelchairuserorapersonofshortstaturecanreachit(andthatthereisanalternativeforpeoplewhoareblind).
Informpeopleofhowtheywillbecalledandofthelocationofthevisualdisplayunitssothattheycansitwheretheycanseeorhearwhentheyarecalled.
Intheabsenceofavisualdisplayunitinthewaitingroom,makesurethatpeoplewithimpairedvisionorthosewhoareDeaforhardofhearingareinformedwhenitistheirturntobeseen.
Ifyouhavealeafletstand,makesureitcanbereachedfromawheelchair.
Ifyourreceptiondeskisnotatanaccessibleheight,bepreparedtomeetawheelchairuserawayfromthereceptiondesk,inaplacewhichwillenablethemtodiscusstheirrequirementswiththesamedegreeofprivacyaffordedtoothers.
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Apersonwithawalkingdifficultyorbalanceproblemsmayneedassistancesittingorstanding.Peoplewithimpairedvisionmayneedassistanceinfindingaseatinthewaitingroomoraconsultation/treatmentroom.
Offertoguidesomeonetothetreatmentroomifthisisneeded;forexample,someonewithimpairedvisionorwhoisunsteadyontheirfeet.
Somepeoplewithdisabilitiesmayfinditdifficulttowaitinacrowdedreceptionorwaitingareawithoutbecomingagitatedoranxious.Wherepossible,provideaquietplaceforpeoplewhoaredistressedoranxioustosit,awayfrombrightlightsandnoise.
9.5 Filling forms
Itmaybehelpfultomakelargeprintformsavailablethatareaccessibletopeoplewith impairedvision.
Itmaybehelpfultoprovidetheoptionfortheformtobeaccessedandcompletedon-lineinadvanceofanappointment,ifpossible.
Askifthepersonneedsassistancefillinginaformandprovidethatassistanceifnecessary.Approximately25%ofadultsinIrelandhaveliteracydifficulties.Theyaresometimesembarrassedbythis,andcanbeveryadeptatcoveringuptheirproblem.Allstaffshouldbeparticularlymindfulofthisgroup.
Ifthereceptionist’scounteristoohigh(forexample,forawheelchairuser),youmayneedtosteparoundittocompleteyourbusinesswiththepatient/serviceuser.Ensurethereisaprivateareawherepeoplecangivepersonalandmedicaldetailswithoutbeingoverheard.
Aclipboardcanbehelpfulforpeopleunabletoreachthecounterwhenfillingoutformsor signing documents.
9.6 Examinationandtreatment
Itisimportanttoliaisewiththespecialistservicesthataretreatinganyunderlyingdisabilityorchroniccondition,andensurethatanyappropriatetreatmentprotocolsarefollowedintheprimarycaresetting.Forexample,someonewithaspinalinjurymayneedtokeepaparticularposture,andthisshouldbefactoredintoanyexaminationorprimarycaretreatment.
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Ensurethatyourtreatmentanddiagnosticfacilitiesareaccessibletowheelchairusersandpeoplewhoareunabletostandforlongperiodsoftime;forexample,itmaybehelpfulto:
• Equipyourpremiseswithanexaminationcouchthatcanberaisedorlowered,andwithahoistormonkeybarsthatcanassistsomeonewithmobilityproblemstosafelytransferonandoff
• Providewheelchairweighingscales;and • Providehandgripstohelppeoplewithmobilityorvisionimpairmentstohavesupportwhen
standing,forexample,onweighingscales
Ifthepatientisnotabletotransfertoanexaminationcouchwithassistance,conducttheexaminationintheperson’schairorwheelchairifappropriate.
9.7 Consent
Youshouldseektheconsentofthepersonwithadisabilityaswithanyotherpatient.SeeGuideline Seven: Consent.
Alwaysaskforconsenttoshareconfidentialinformationaboutanindividual’saccessibilityrequirements.
9.8 Communication with patients and service users
See Guideline Four: Communication for more information on communicating with a patient or service user in a way that meets their needs.
Communicatedirectlywiththeperson,ratherthantheirfamilymember,carerorinterpreter.
Ifyouhaveapatientwithadisability,askwhattheirpreferredmethodofcommunicationistoenabletwo-waycommunicationwiththeservice;forexample,orally,inwriting,bye-mailorotherwise.Textandemailmaybeappropriateformakingappointments/administrativetasks;however,theyshouldneversubstituteforafacetofaceclinicalorprofessionalconsultation.Itisrelativelyeasytohaveanemailrelationshipwithapatientwithadisability,butthiscanbeasourceoferrorandpoorclinical management if it is the sole means of communication.
Ensurethatcommunicationisappropriatetotheperson’sneedssothatthepersoncanreceiveandunderstandcommunicationaroundappointmentsorreferrals,adiagnosis,prescribingmedications,exercisesetc.
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Recordtheirpreferredmethodofcommunicationontheirfileandensurethat: • Relevantstaff,suchasreceptionistswhomakeappointments,areawareofitand • Asystemisinplacetoalertotherrelevantstaffwhomayhavecontactwiththepatientorservice
useraspartoftheircareplan
Wherethepersonhasasignificantdisability,familymembersorcarersmaybeabletoofferguidanceonhowbesttocommunicate.
Wherepossible,usetheperson’spreferredformofcommunication,forexample,textingore-mailing,inrelationtoappointments.
Givethepatientorserviceuserrelevantinformationtotakeaway,clearlytypedandinplainEnglish.Aservicemaytakestepstotranslatetheinformationintootherlanguageswherenecessary;however,thisshouldalsobewritteninastylewhichiseasytounderstand.
Itmaybenecessarytoprovideadditionaltimeorcommunicationsupporttoenableapersontounderstandthetreatmentandpossibleoutcomesandtoaskquestions.Aservicemaytakestepstotranslatetheinformationintootherlanguageswherenecessary;however,thisshouldalsobewritteninastylewhichiseasytounderstand.
Generalprinciplesofgoodcommunicationinclude: • Facethepersonyouarecommunicatingwith • Maintaineyecontact • Nevercarryoutanothertaskwhenlisteningtosomeone • Speakclearly,conciselyandslowly • Usestraightforwardlanguage • Askonequestionatatimeanddonotinterruptunlessnecessary • Givethepersontimetorespondandaskquestions • Repeatwhatyouhavesaidwhenapersonishavingdifficultyunderstandingandverifythatthey
haveunderstood;and • Phrasequestionsinawaythatapersoncangiveasimple‘yes’or‘no’answer
Explaintheproceduresyouwillundertake,stepbystep.
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Forapatientwhoisunabletosee,gothrougheachprocedureortestbeforeyoudoit.Tellthemwhatpartsoftheirbodyyouwillexamineandwhereyouwilltouch.Ifyouaregivinganinjectionoraneedleprick,explainwhereyouwillputtheneedleor,ifyouaretakingbloodpressureorusingastethoscope,explaintheprocedure.
Somepatientsorserviceusersmayneedextratimetounderstandwhatisbeingsaidtothemandtoaskquestions(forexample,apersonwhoisunabletospeakortohear,whohasdifficultyprocessingorretaininginformationorwhocannotread,orapersonwhohasanintellectualdisability,anacquiredbraininjuryordementia).Useverysimplelanguage.Astheymayhavedifficultiesprocessingorrememberinginformation,takeitslowly,stepbystep.
Donotoverloadthepatientorserviceuserwithinformation.Whereappropriate,usepictures,signsandsymbols.
Ifsomeonehasdifficultyinhearing,facethemdirectlyandmakesureyourfaceisinthelight,toenablethemlip-read.Speakclearly,donotexaggerateyourmouthmovementsanddonotcoveryourmouth.Usegesturesanddiagramsandprovideinformationinwritingtoreinforcewhatyou aresaying.
Ifyouhavedifficultyunderstandingwhatapersonissaying,telltheminarespectfulway.Thepersonmaybeabletorespondwithagesturetoquestionsthatrequirejusta“yes“or“no”answer.
IfrequestedbyaDeafperson,bookanIrishSignLanguageinterpreterinadvanceofanappointment.TakeallreasonablestepstoensurethataDeafpersoncanaccessaqualifiedIrishSignLanguageinterpreteroftheirchoice.Theabsenceofaprofessionalinterpretercanresultinmisdiagnosis,clinicalriskandcompromisesafety.Wherethereisanunplannedvisitoranemergency,youmaybeabletocommunicatethrougharemotesignlanguageinterpreterviavideolink.Thisrequiresawifi-enabledcomputerwithacamera,microphoneandspeakers,asfoundonmodernlaptops.
Besensitivetothestressitmaycauseifsomeonehasdifficultyincommunicatingclearlyorinunderstandinginformation.Facilitatethemingivingitextratimeandinexplainingasclearlyasyoucan,usinggesturesanddiagramstosupplementthespokenword.
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9.9 Information
For further information see Guideline Five: Accessible information.
Provideinformationonaccessibilityfeaturesofyourpremisesandservices.Includethisinformationonyourcommunicationmaterials;forexample,onawebsite,informationleaflets,bookletsetc.
Providetake-homeinformationtosupplementwhatyousaytoyourpatientsorserviceusers.Peoplemaynotbeabletoabsorbeverythingyousayduringaconsultationortreatmentsession.InformationshouldbewritteninplainEnglishandtypedinclearprint.Usesimplelanguagetoexplainmedicalterms.Provideappropriatediagrams,forexample,forphysicalexercises.
Provideinformationtoyourpatientsonotherrelevantcommunitysupportservicesandentitlements;forexample,ifapatienthasrecentlydevelopedadisability,youmaybeabletoreferthemtotheappropriatesupportgroupforthatcondition.TheCitizensInformationBoardpublishesinformationonentitlementsforpeoplewithdisabilities.
Provideserviceuser/patientinformationforms,informationaboutafter-care,prescriptions,medicalcertificatesandotherinformationleafletsinalargeprintformatwhenrequired.
SomepeoplewithanintellectualdisabilitymayrequireinformationinEasytoReadformat,whichconsistsofshortsimpletextandillustrations.Thereareanumberofresourcesyoucandrawon,suchaspicturebanksandpicturebooksthatareusedbysomepeoplewithanintellectualdisabilityinhealthsettings.Usepicturesandsymbolstoexplaintreatmentsorhealthconditions
Donotpresumethatapersoncanreadorunderstandthewritteninformationyouprovide.Alwaysverballyexplainanywritteninformationaboutmedication,treatmentorafter-care,forexample.Checkthattheserviceuserunderstandswhatyouhavesaidandwrittendown.Ifthisisnotclearrepeattheinformationandbepatient.
9.10 Continuity of care
ItwillhelpsomepeoplewithdisabilitiestoseethesameGPorotherrelevantprofessionaleachtimetheyvisit.Forexample,apersonwithanacquiredbraininjuryorapersonwithanintellectualdisabilitymayexperiencelessdistressiftheyaredealingwithamemberofstaffthattheyknow.
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Ensurethateverymemberofstaffistrainedsothattheymayrecognisetheaccessibilityandcommunicationneedsofpatientsandserviceusersand,inturn,communicatewithandassistthemas needed.
9.11 Home visits
SomepatientsmayfinditphysicallydifficulttogettoaGPsurgeryorprimarycarecentre.Others,suchasapersonwithanintellectualdisabilityordementia,maybelessdisorientatedoranxiousiftheyareseenathomebyaGPorothermemberoftheprimarycareteam.Wherepossible,arrangehome visits in these circumstances
Ifyouarevisitingapersonwithimpairedvisionintheirownhome,letthemknowifyoumovesomethingandletthemknowifyoureplacetheitemsothatshe/hecanfinditwhenyouleave.
9.12 Family members and carers
Familymembers,carersandsupportpersonsplayakeyrole,particularlyforpeoplewithsignificantlevelsofdisability.Theyareoftenaninvaluablesourceofexpertiseaboutaperson’sdisability,healthandwell-being.Theycanhelpachievebetteroutcomesincommunication,understandinganddecision-making.Withtheconsentofthepersonwithadisability,involvetheirfamily,members,carersandsupportpersonsincareplans.
Primarycommunicationmustbewiththepatientandnotwiththeirfamilymemberor personalassistant.
Wherethepersonsoconsents,givefamilymembers,carersandsupportpersonsinformationthatiseasytofollowaboutthetreatment,diagnosis,medicationandfollow-upappointments,toenablethemtoprovideappropriatecareandsupport.
Publichealthnurses,socialworkersandothermembersofprimarycareteamscanplayakeyroleinsupportingfamilycarersandingivingtheminformationonthehelpandtheentitlementsopentothem.TheCitizensInformationBoardwebsiteisalsoausefulsourceoninformationonentitlementsandsupports.
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9.13 Referralandsharingofinformation
Itisessentialthatpatientsandserviceusersexperienceintegratedcareinprimarycare,specialistcare,rehabilitationandhospitalcareserviceswhichiscentredontheindividualandtheirneeds.Whereappropriate,teamscansharetheirknowledgeandexperiencesothatpersoncentredcarebecomes the norm.
Themultidisciplinaryteaminprimarycarecanmeetdifferentaspectsofanindividual’sneeds;forexample,thepublichealthnurse,physiotherapist,occupationaltherapist,socialworkerorspeechandlanguagetherapist.
Theprimarycareteamplaysanimportantroleinsupportinganindividualwithadisabilitywhoisawaitingarehabilitationserviceorhasbeendischargedfromrehabilitationbacktothecommunity.
Theindividual’sfamily,carersordisabilitysupportservicealsohaveakeyrole.Theprimarycareteammayneedtoliaisewithothersinvolvedintheperson’scare,includinghospitalspecialistsorthecommunitymentalhealthcareteam,whereappropriate.
Itisimportanttohavegoodcommunicationbetweendifferentindividualsandteamswhicharelookingafterdifferentaspectsofaperson’smedical,careandsupportneedssothattheseareaddressedinaco-ordinatedway.
Itisalsoimportanttoensurethatparticularaccessibilityrequirements,forexample,preferredformsofcommunication,aresharedbetweendifferentprofessionalsandservicesinvolvedintheperson’scare,sothatthesedonotneedtobenegotiatedagaineverytime.
Askfortheperson’sconsentfortheiraccessibilityrequirementsbeingnotedintheirfileandpassedontootherpractitioners
Includethepersonandtheirfamily(withtheperson’sconsentwhereappropriate)inanymulti-disciplinarycaseconference.
Primarycareteamservicesandspecialistdisabilitysupportservicesmaybenecessaryaftertheonsetofadisability;forexample,ifapersonacquiresabraininjuryfromanaccident.Oftenthereisawaitinglistforrehabilitation,whichmeansthatthereisakeyroleforcommunitysupportandinformationforthepersonduringthisinterimperiod.
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Accessible Hospital Services, including Out-Patient Departments
ThefollowingsectionshouldbereadinconjunctionwithPartOne: Guideline Three: Accessible services - general advice Guideline Four: Communication Guideline Five: Accessible information Guideline Six: Accessible buildings and facilities Guideline Seven: Consent GuidelineEight:Roleoffamilymembersandsupportpersons
10.1 Ask, Listen, Learn, Plan, Do
Peoplewithdisabilitiesareoftenexpertsinwhattheyneed.SeeGuideline One: Developing accessible health and social care servicesformoreinformationonAsk,Listen,Learn,PlanandDo.
Ask
• Askallpatients:Doyouhaveanyspecificrequirementsthatmustbeaccommodated?Isthereanythingwecandotoassistyou?Remembermanydisabilitiesarenotvisible
• Withtheconsentofthepersonwithadisability,familymembers,carersorsupportworkersmayalsobeabletoguideonanyspecificneeds.
Listen
• Listenattentivelytowhattheirrequirementsareandhowtheycanbeaddressed.
10. Guideline Ten
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Learn
• Usebookingvisitsorpre-admissionclinicstoidentifyanyaccessibilityneedsbeforeaperson
attendsforelectiveorpre-plannedtreatment • Ifaccessibilityrequirementshavenotbeendeterminedatpre-admissionstage,makeaplan
whenthepersonfirstvisitsthehospital
Plan
• Planthesupportrequiredfor: 1. Admission 2. Hospitalstay 3. Discharge
Do
• Puttheplanintoaction
Thefollowingsectionswillgiveyoumoreinformationonplanningthesupportforeachofthesestages.
10.2 Who to talk to when developing the care plan?
Discussanyoptionswiththeindividual. Involve,withtheconsentofthepersonwithadisability,theirfamily,members,carersandsupport
personsinthedrawingupofcareplans. • Familymembers,carersandsupportpersonscanplayakeyroleinsupportingandcaringfor
peoplewithdisabilitiesandareaninvaluablesourceofexpertiseaboutaperson’sdisability,healthandwell-being
• Insofaraspossible,facilitateapersonwithadisability,wheretheysowish,toreceivecareandsupportfromfamilymembers,carersorpersonalassistantswhileinhospital.However,familycarersandothersupportpersonsshouldneverbeusedtoreplacegeneralnursingormedicalcarestaff
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• Familymembersorothercarersmayneedtobegiveninformationaboutdiagnosis,medication,treatment,exercises,careandanyoutpatients’appointments,inordertoprovideeffectivesupportafterdischargefromhospital
Organiseamulti-disciplinarycaseconferencewherethisisrequired;forexample,wherethepersonhascomplexconditionsorhighsupportneeds.Cross-disciplinarysupportmaybeinvaluableintreatingsomeonewithdementia,withintellectualdisability,withmentalhealthdifficulties,withspinalinjuriesorothercomplexneeds.
• Liaisewithothermedicalteamsinvolvedintheperson’scareandtreatmentasappropriate • Drawontheexpertiseofstafffromacrossthehospital,suchasphysiotherapists,socialworkers
andspeechandlanguagetherapists,whowillassistwithplanningservicesandinformationforpeoplewithdisabilitiespriortoadmissionandondischarge
• Liaiseasrequiredwithdisabilityserviceproviders,theperson’skeyworkerorclinicalspecialistsindisability.Thisshouldalsoassistwhenco-ordinatingcareandplanningbetweenthehospitalandthecommunity
• Liaiseasrequiredwitholderpeople’sspecialistsinthehospitalandwithspecialistservices,primarycareteams,voluntaryorganisationsandkeyworkersinthecommunity
10.3 Identify existing care protocols
Identifyifthereareanycareprotocolsassociatedwiththeperson’sprimarydisabilityorpre-existingcondition.Forexample:
• Peoplewithspinalinjuriesmayhaveparticularrequirementsaroundposture,toileting,andavoidanceofpressuresores
• Peoplemayneedhelpwiththeirtoiletingandbathingrequirements,eatinganddrinking,regularturningtopreventpressuresoresorinprovidingaccessiblecommunication
10.4 Prepare in advance
Bookanyequipmentorarrangeassistanceoradaptationsbeforethepersonisadmittedtohospital.Forexample,aliftinghoistmaybeneededinatreatmentroominorderforsomeonetomovesafelyfromtheirwheelchairontoanexamination.
Placeanaccessibilitychecklistintheperson’sfilesothatallaccessibilityrequirementscanbenoted.(SeeAppendix 1forasamplechecklist.Anonlinechecklistmaysuitsomepeople).Usethelistatfollow-upappointmentsorwhenreferredtootherdiagnosticortreatmentservicesin
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thehospital,ortocommunitybasedservices.Checkifanyrequirementshavechangedateachsubsequentvisit.
Enableaccesstoanindependentadvocate;providethepersonwithcontactdetailsforindependentadvocacyservicestohelpthepersonavailoftheirentitlements.
Arrangewherepossibleforcontinuityofcaresothatsomeonewithadisabilitycanbenefitfromseeingsamehealthpractitionereachtimetheyattendanoutpatientappointment.Factorthis intotheschedulingofappointments.Forexample,someonewithanacquiredbraininjuryorapersonwithanintellectualdisabilityislikelytoexperiencelessdistressifthepersontheyseeifknowntothem.
10.5 In the hospital
Admission - In reception • Wherealowreceptiondeskisavailable,makesurethatthelowspaceiskeptclearandis
notblockedwithofficeequipment,toallowface-to-facecontactwithamanualorpoweredwheelchairuserandpeopleofshortstature
• Peoplewithmentalhealthdifficultiesoranintellectualdisabilitymayprefertositandwaitinaquietareaifavailable
Informing people of their turn to be seen • Besensitiveabouthowyoucallaperson;donotshoutorcompromisetheperson’sprivacy.If
thereisnotadualspokenandvisualannouncementofsomeone’sturn,peoplemayrequireareceptionisttoalertthemwhentheirappointmentiscalled.Forexample:
– Peoplewithimpairedvisioncanbealertedbyagentletapontheirshoulderorarm – PeoplewhoareDeaforhardofhearingcanbealertedvisuallybyahandmovement,suchas
adiscreetwaveorbytappingthepersongentlyontheirshoulderorarm Getting to the appointment / ward • Peoplewithwalkingdifficultiesorbalanceproblemsmayneedassistanceingettingtoan
outpatientclinicorward.Forexample: – Portersshouldbeavailabletoassistapersonifrequested,forexample,tositdownor
standfromaseatedposition,and/orprovideawheelchairandaccompanyapersonwithamobilitydifficulty
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– Iftheoutpatientclinic,consultingortreatmentroomisinapartofthehospitalwhichthepatientcannotaccess(forexample,upstairs),arrangetoseethepersoninanalternativelocationthatisaccessibletothepatient.Putinplaceaplansothatthiswillberectifiedin the future
• Apersonwithimpairedvisionmayrequesta‘sightedguide’.Again,porters,receptionistsandotherstaffcanalllearnhowtoaccompanyandguidepeoplewithimpairedvisionappropriatelywhenrequested
In the ward • Accommodatetherequirementsofapersonwithadisabilitywhentheyareadmittedtoaward.
Forexample: – allocateabedclosetoanaccessibletoiletandwashingfacilities – ensurethatthereisafacilityforpeoplewhoareDeaforhardofhearingtoaccesssubtitles,
if there is a television in the room • Wherepossible,apersonmayprefertobeinaquietpartofthewardorinasingleroom;
forexample: – apersonwithmentalhealthdifficultiesmayprefertobelocatedinaquietpartofthewardor
inasingleroom,ifpossible,awayfromloudnoisesandbrightlights.Asingleroommaybeimportantforsomeonewhoneedstogetagoodnight’ssleeptomanageaparticularcondition(forexample,bipolardisorder)
– apersonwhoishardofhearingmayfinditeasiertocommunicatemoreeffectivelyinaquietpartofthewardorasingleroom.Wherepossible,positiontheirbedsothattheycanseewhensomeonecomesintotheroom
– apersonwithimpairedvisionmayfinditeasiertocommunicateinaquietpartofthewardorin a single room
– apersonwithanintellectualdisabilityorcognitiveimpairmentmaybelessanxiousiftheyareinafamiliarandquietenvironment
– apersonwithdementiaorothercognitiveimpairmentmaybenefitfrombeinginaquiet partofthewardorinasingleroom.Thismayhelptoreduceconfusionandanxiety.Avoidmovingpeoplewithdementiafromoneroomtoanotherwherepossible,asthatcangiveriseto distress
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Meal times • Whenservingameal,cateringstaffshouldtellapersonwithimpairedvisionthatthemealhas
arrivedandhasbeenplacedinfrontofhim/her • Adaptedcutleryanddrinkingaidsshouldbemadeavailabletothosewhoneedthem • Servefoodonatraythathasagoodedge–anythingspilledwillstayonthetray • Helpthepersonidentifywherethefoodisonadinnerplatebyusingaclocksystem.For
example,“themeatisat12o’clock,thepeasareat3o’clockandthepotatoesareat6o’clock” • Forsomeonewithlowvision,providinggoodcolourcontrastbetweenadrinkanditscontainer
canavoidaccidents.Forexample,waterinaclearglassmaynotbeeasilyseen;insteadplacethewaterinabrightlycolouredcup.Anotherexampleistopourteaintoawhitemugwhereitiseasiertoseethaninabrownmug
• Sometimesapersonalassistantorsupportpersonisabletoassistwithfeeding;forexample,wherethepersonhasswallowingdifficulties.Thisshouldonlybecarriedoutwiththeconsentofthepersonwithadisability,andshouldneverreplacegeneralcareprovidedbyhospitalstaff
• Makespecialprovisionforpeoplewithdisabilitieswhodonothaveacarerorsupportpersontoassistthem.Itisveryimportanttoprovideassistancewithmealsandhydration
Care from family or carer • Wherepossible,provideflexibilityinvisitingtimessothatpeoplewithdisabilitiescanreceive
supportfromtheirfamilymember,carer,supportpersonorpersonalassistant,ifrequested.Thisisimportantforpeoplewithsignificantdisabilities
• Makespecialprovisionforpeoplewithdisabilitieswhodonothaveacarerorsupportpersontoassistthem.Itisveryimportanttoprovideassistancewithmealsandhydration,usingthetoiletandwashing
• Carefromfamilyoracarershouldneverreplacegeneralcareprovidedbyhospitalstaff
Disability-specificcareneeds • Beawareofspecificdisability-relatedhealthsupportneeds.Beingawareoftheneedforspecific
carecanavoidtheonsetofmorecomplicatedhealthproblemsForexample: – Apersonmayrequireregularturningtoavoidtheriskofthebuild-upofpressuresores – Apersonmayrequiretheuseofahoist,wheelchairorotherspecialisedequipment – Apersonwithaspinalcordinjuryorparalysismayrequiretimelyandrespectfulbowelcare
procedurestobeimplementedatspecifiedtimes.
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Where people cannot articulate their needs • Itisparticularlyimportantthathospitalstaffbeawarethatsomepeoplewithdisabilities,suchas
peoplewithanintellectualdisabilityorpeoplewithanacquiredbraininjury,maynotbeabletoarticulatetheirrequirementsclearly;forexample,askingforwaterorusingthetoilet
• Thisisalsoimportantbecauseapersonmaynotbeabletoarticulatechangesintheirsymptomsorpainlevels.Thefollowingmaybehelpful:
– ahigherlevelofclinicalobservationandthebuildingofagoodrelationshipandcommunications
– sensitivityandgoodcommunicationstoassistthepersonincommunicatingpainanddiscomfort;and
– theuseofpicturesandsymbolsoraskingapersontotouchthepartoftheirbodythathurts
Familiar objects • Encouragepeoplewithintellectualdisabilitiesandpeoplewithdementiatobringsomefamiliar
objectssuchasphotographsoffamilymembersontheirbedsidetable
Television • Ensurethatthefacilityforsubtitlesisswitchedonasthiswillmeanthatthetelevisionis
accessibleforpeoplewhoareDeaforhardofhearing • Manypeoplewithsightlossenjoytelevision,sodon’tbeembarrassedtoaskthepersonifthey
wouldlikethetelevisionswitchedon
Hearing loop / Listening Devices • Wherepossible,provideafacilityforapersonwhoisahearingaidusertohaveaportable
inductionloopsothattheycancommunicatewithstafforvisitorsduringtheirstayinhospital.Listeningdevicesthatamplifysoundcanhelpimprovecommunicationwithpeoplewhoarehardof hearing
Explain medical procedures clearly and accessibly • Ifapersonisundergoinganoperationoranyprocedure,itisimportantthatwhatisgoingto
happenisclearlyexplainedinadvance • Itisparticularlyimportanttoletsomeonewhoisblindorhaslowvisionknowwhatishappening
verbally,astheywillnotbeabletoseeit.Explainclearlyandstep-by-stepwhatishappeningateachstage.Forexample:
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– Ifananaesthetistisgoingtoapplyanoxygenmask,thisshouldbeexplainedinadvance – IfapersonishavinganMRIscan,mammogramorx-ray,explainallproceduresclearlyandlet
thepersonknowwhenyoumovebehindascreenorintoanotherroom – Ifdiagnosticequipmentisbeingused,suchasanechocardiogram,describeclearlywhatison
thescreen,asthismaynotbeseenbyapersonwithimpairedvisionorunderstoodbypeoplewithcognitiveimpairments
– Ifpeoplewithimpairedvisionareaskedtowearahaltermonitororbloodpressuremonitor,pointoutwherethemonitorwillbelocatedbeforeitisputon
• Alwaysaskpeoplewithdisabilities,“Isthereanythingwecandotoassistyou?”
10.6 Dischargefromhospital-integrateddischargeplanning
“Toensureserviceusersaredischargedortransferredsafelyandontimerequiresfullassessment
oftheirindividualhealthcareneeds,planningandco‐operationofmanyhealthandsocialcareprofessionals.”13
Makeaplanforcontinuityofcareandsupportafterdischargeinaccordancewiththe“Integratedcareguidance:Apracticalguidetodischargeandtransferfromhospital”.
Seesection3.14foranextractfromthe“Discharge and transfer from hospital - The nine steps quick reference guide”andsomehelpfulguidance.
• Step one: Beginplanningfordischargebeforeoronadmission • Step two: Identifywhethertheserviceuserhassimpleorcomplexneeds • Step three: Developatreatmentplanwithin24hoursofadmission • Step four:Worktogethertoprovidecomprehensiveserviceuserassessmentandtreatment • Stepfive:Setapredicteddateofdischarge/transferwithin24–48hoursofadmission • Step six: Involveserviceusersandcarerssotheymakeinformeddecisionsandchoices • Step seven: Reviewthetreatmentplanonadailybasiswiththeserviceuser • Step eight:Useadischargechecklist24–48hoursbeforedischarge • Step nine: Makedecisionstodischarge/transferserviceuserseachday
13ExtractfromIntegratedCareGuidance-Apracticalguidetodischargeandtransferfromhospital.
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Accessible Emergency Departments
ThefollowingsectionshouldbereadinconjunctionwithPartOne: Guideline Three: Accessible services - general advice Guideline Four: Communication Guideline Five: Accessible information Guideline Six: Accessible buildings and facilities Guideline Seven: Consent Guideline Eight: Roleoffamilymembersandsupportpersons
StaffshouldalsorefertoThe National Emergency Medicine Programme – A strategy to improve safety, quality, access and value in Emergency Medicine in Irelandwhichisreferencedthroughoutthesectionbelow.
Emergency Sign Language Interpretative Service
OnceEmergencyDepartmentstaffidentifythatapersonisDeafandusesIrishSignLanguage (ISL)astheirprimarylanguage,theyshouldfollowthelocalpolicyinplacetoarrangeaninterpreter.
TheemergencycontactnumberfortheSignLanguageInterpretativeServicesis0876725179.
Emergency Multilingual Aids (EMA)
EMAsareavailabletoassiststaffandpatientsinanemergencywhereEnglishisnottheirfirstlanguage.Theseareavailableon:http://www.hse.ie/eng/services/Publications/services/SocialInclusion/EMA.html
11.1 On arrival
ExtractfromtheNationalEmergencyMedicineProgramme(EMP)Strategy:Section16.8.2.10Vulnerable adults:
Adultswithaphysicalorintellectualdisability,cognitiveimpairmentormentalill-health diagnosesmayrequireadditionalsocialsupportsduringandfollowingtheirEmergency Department(ED)presentation.
11. Guideline Eleven
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The National Emergency Medicine Programme (EMP) – A strategy to improve safety, quality, access and value in Emergency Medicine (EM) in Ireland(referredtoastheNational EMP Strategyinthefollowingsection)notesthatsomepeoplehaveadditionalorparticularcareneedswhentheypresenttoemergencyservices.Thestrategymakesspecificreferencetopatientswithcomplexpsycho-socialproblems,peoplewithanintellectualdisability,peoplewithaphysicaldisability,andpeoplewithlanguageorcommunicationproblems.Alloftheseserviceusersmayhaveaccessibilityneeds.Itis,therefore,importanttobesensitivetotheneedsofpatientsandserviceusers,andtoidentifyasearlyaspossibleinthepatient/serviceuserexperiencewhatneedsapersonmayhavesothattheycanbemanagedaccordingly.Forexample:
Thereceptionistmayduringthecheckinprocessidentifyiftheserviceuserortheircarerhasanyobviousaccessibilityneedsand,whereappropriate,informclinicalstaff.Localproceduresshouldbedevelopedtosupportstaffwhoidentifyaccessibilityneeds;forexample,howtoarrangeaninterpretativeserviceinanemergency.
WhiletheNational EMP StrategyidentifiesthemostimportantcomponentofEmergencyMedicineworkasthe“prioritisedevaluationandtreatmentofpatientswithtime-criticalhealthcareneeds”,itmaytakeadditionaltimetoassessaperson’simmediatecommunicationorothersupportrequirementswheretheyhaveaccessibilityneeds.
Assignednursesordoctorsmayroutinelyidentifyanyaccessibilityneedwhenaskingaboutthepast
historyofnoteorattheendofatriageprocess,whenasking“Isthereanythingelseyouneedtotellus?”.However,inordertoevaluateandtreatsomepatients,itcanbehelpfulforstafftotailorquestionstospecificallyidentifyaccessibilityneedsor,alternatively,howtomeetthem.
Top Tips
• Remembersomeformsofdisabilityarenotvisible • Provideassistancetopeopletomeettheiraccessibilityrequirementswherepossible.However,
donotassumethatyouknowbest.Justbecausepeoplehavethesamedisability,itdoesnotmeantheirneedsarethesame.Alwaysaskiftherearespecificrequirementstoaccommodateaperson’sdisability.Apersonwithadisabilityisnormallyanexpertinwhatisrequiredtoensurethattheiraccessibilityneedsaremet
• ThetriagenurseshoulddocumentanyidentifiedaccessibilityneedsonthefrontoftheEmergencyDepartmentcardandhighlightitinhandover.Thisnotonlyimprovestheexperience
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forthepatientortheirfamily/carer,butalsosavesstaffcriticaltime • Forsomepatients,itcanbehelpfultohavethesamestaffmemberinvolvedintheircare
throughouttheEmergencyDepartmentjourney;however,thisisnotalwayspossible
11.2 Communication
ExtractfromNational EMP Strategy, Section 21.7 People with Language or Communication Problems
ExcellentcommunicationisessentialtothesuccessfulinteractionwithallpatientsandtheirfamiliesattendingEmergencyCareNetworks(ECN)14units.Clearinformationisrequiredonaccessroutestothehospital;therefore,effectiveroadandhospitalsignagedetailingthetypeofECN unit is essential.
Communicationbarriersthatcanimpedesuccessfulinteractioninclude: • Literacydifficulties • Notspeakingthesamelanguage • Communicationbarriersintheenvironment,includingpoorsignageandanoisyenvironment • Theinabilitytoaccessand/oruseservicesorequipment • Physicaldisabilityrestrictingcommunication,suchasdifficultieswithwriting • Avisualorhearingimpairment;and • Alackofabilitytoconcentrateandfocusoncommunication
PatientsmaypresenttotheECNwithoneoravarietyoftheabovebarrierstoeffectivecommunication.ResourcestoassistwithremovingandreducinglanguageandcommunicationbarriersarelistedintheReferencesandResourcessectionoftheNationalEMPStrategy.SpeechandLanguageTherapistscanalsoprovideassistancewithreducingcommunicationbarriersasoutlinedinChapter16ofthestrategy.Whereapatientdoesn’thaveadequateEnglishskills,theHSErecommendstheuseofprofessionalinterpretingservicesforclinicalexaminationsorobtainingconsenttoensurepatientconfidentiality.
14EmergencyCareNetworks(ECN’s)willinclude: •24/7EmergencyDepartments(ED’s); •LocalInjuryUnits(LIU’s)wherepatientswithnon-lifethreateninginjuriescanreceivecare; •ThepotentialroleofLocalEmergencyUnits(LEU’s)providingdaytimeonlyemergencyservicesmaybeconsideredonalimitednumberofsites.
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Effectivecommunicationisessentialtotakeagoodcasehistoryandidentifysymptoms.Difficultiesincommunicationcanincreasetheriskthathealthconditionsorsymptomspassundetected.
Provideforaccessiblecommunicationandinformationateverystageofthepatient’sjourney.Establishifthereareanyspecificcommunicationaidsthatthepersonwantstouseandtheirpreferredformofcommunicationsothattheiraccessibilityneedsaremet.Forexample:
• Somepeoplewithanintellectualdisabilityhaveacommunicationpassport;somepeoplewithspeechimpairmentsuseacommunicationsboard.Communicationaidswillnormallycontaininformationabouttheperson’sdisability,communicationneeds,medicationorhealth.15 The patientpassport,wherepossible,shouldbeusedtoinformtheAcuteNeedsAssessment
• Iffundingbecomesavailable,itmaybehelpfultoprocureaportableinductionloopforhearingaidusersoraportablelisteningdeviceforhardofhearingserviceusers
Building trust is essential to good communication.
Alwayscommunicatewiththepersonwithadisabilityinthefirstinstance.Ifthisisnotpossible,involvetheperson’scarerorsupportperson.
Youmayneedtoallowadditionaltimetocommunicatewithserviceusersdependingontheirneeds.Providingthetimemaybeimportantindetectingahealthproblemthatisnotobvious,makingacorrectdiagnosisandexplainingthisandfollowuptreatment.Apersonwithanintellectualdisability,forexample,mayneedmoretimeinordertounderstandthediagnosisandthetreatment.
For more details see Guideline Four: Communication and Guideline Seven: Consent
11.3 Accessibility requirements
Asattendanceinanemergencydepartmentisnotplanned,peoplewithdisabilitieswillnothaveletthehospitalknowinadvanceofanysupportneeds.
“TheinfrastructureofeachfacilityintheECN(EmergencyCareNetwork)mustmeettheneedsofpatientswithaphysicaldisability,thusensuringtheyarecaredforinasafeenvironment.EmergencyDepartmentinfrastructureshouldalsoaccommodatepatients’familymembers,carers,EmergencyDepartmentstaffandotherhospitalstaffwhohavephysicaldisability.”16 In addition toanaccessibletreatmentspace,equipmentcanalsobehelpful.Examplesincludeaheight-
15SeeTheNationalEmergencyMedicineProgramme–Astrategytoimprovesafety,quality,accessandvalueinEmergencyMedicineinIreland-Section21.5.1.1,PatientPassportandSection21.5.1.2,Acuteneedsassessment.
16SeeTheNationalEmergencyMedicineProgramme–Astrategytoimprovesafety,quality,accessandvalueinEmergencyMedicineinIreland-Section21.6PeoplewithPhysicalDisability
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adjustabletrolleyorexaminationcouch,andhoiststoassistawheelchairusertosafelymoveontoanadjustabletrolley/examinationcouchfromtheirwheelchair.
Itispartofessentialcaretoensurethatpatientsarehydrated,thatbasiccomfortneedsaremetandthatanyadditionalinterventionsareundertakentopreventtheriskofbuild-upofpressuresores,particularlyiftheyhavetowaitonatrolleyformorethantwohours.
Apersonwithadisabilitymayhavespecificsupportneedsaroundbasicactivities,suchaseating,drinking,turningtopreventpressuresoresorgoingtothebathroom.Forexample,ifapersonisintheemergencydepartmentforlongperiodsoftimeonatrolley,theymayneedtobeturnedregularlytopreventtheriskofpressuresores,ortheymayneedassistancewithanyfeedingandhydrationrequired.
Thissupportisespeciallyimportantifthepersondoesnothaveafamilymember,personalassistantorcareworkerwiththem.However,eveniftheyareavailableandmaywishtoassistintheprocess,familycarersandothersupportpersonsshouldneverbeusedtoreplacegeneralnursingormedicalcarestaff.
Whilemanyofthesupportneedsaroundbasicactivitieswillberoutinelymetaspartoftheprofessionalstandardsadheredtobystaffprovidingessentialcare,staffmayneedtobemadeawareofspecificneedsduringhandoverprocesses,andotherdisciplinesofstaffmayneedguidanceontheirrole.Inabusyemergencydepartment,itisimportanttoensurethatspecificrequirementsofsomeonewithadisabilityarenotoverlooked.
• Ensurethatrelevantstaffhavereceivedappropriatetrainingtoassist • Handoverbetweenstaffindifferentdisciplinesshouldroutinelyincludeabriefingonspecific
accessibilityneeds • Wherenecessary,developanagreedapproachtoensurethatspecificcareneedsaremanaged
atappropriateintervalsasrequired
Theemergencydepartmentstaffmayneedtoliaisewithappropriateservicestoidentifyspecificneeds.Thismightincludetheperson’sGPorspecialist(forexample,thepsychiatricteamorcommunitymentalhealthteam)ortheirdisabilitysupportservice.SeeSection16oftheNational EMP Strategyforinformationontherolesoftherapyprofessionalsandmedicalsocialworkersinemergencycareincludingphysiotherapists,occupationaltherapists,orthoptists,speechandlanguagetherapists,dieticians,podiatristsandmedicalsocialworkers.
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See Guideline 4: Communication for more information on communicating with patients and serviceuserswithspecificdisabilities.
Ifadmittedtohospital,itisessentialthataperson’saccessibilityrequirementsarepassedontoallrelevantstaff,includingreceptionists,portersandcateringstaff.Informthepersonwithadisabilityofanyinformationthatisbeingpassedontootherstafforserviceproviders.
11.4 Waiting to be seen
“EmergencyDepartmentcliniciansandhospitalshaveadutyofcaretopatientswhomayneedtobeaccommodatedinawaitingroomarea.”SeeSection19.9.2.RecommendationsforPatientCareinEmergencyDepartmentwaitingRoomsoftheNationalEMPStrategy.
Usethistimeasanopportunitytofindoutifthereareanyspecificrequirementswhiletheperson iswaiting.
Thetriageprocesswillidentifythepriorityinthetreatmentofpatients,basedontheseverityoftheirconditionwhichcanleadtodelaysforotherpatients.
Somepatientsandserviceusersmayexperiencesignificantdistressoranxietyinunfamiliar,crowdedornoisyenvironments;forexample,apersonwithamentalhealthdifficulty,anacquiredbraininjury,anintellectualdisabilityorapersonwithdementia.IftheEmergencyDepartmenthasthespaceand/orcapacity,thefollowingmeasuresmaybehelpfulforserviceusersinthissituation.However,itshouldbenotedthatthesesuggestionsarenottoprovideapersonwithadisabilityapreferentialserviceoveranyotherpatientorserviceuser,butrathertoensurethatcompassionisshowninasituationwhereaperson’sdisabilitydirectlyleadstosignificantdistressoranxietywhichcouldbealleviated.Pleasenote,thefollowingsuggestionsaredependentonlocalresources:
• Askapersoniftheywouldprefertowaitinaquietroom/elsewhereandcallthemwhentheirturn is near
• Informapersonifthereistobealongwaitandhowlongitwillbe,ifthisisknown.Thismayallowthemanopportunitytogoawayandgetacupofteaorameal.Sendatextmessageorcallthemontheirmobilephoneiftheyarenearthetopofthequeue
MakesurethatsystemsareinplacetoensurethatpeopleareinformedappropriatelywhenitistheirturntobeseeniftheyhaveimpairedvisionorareDeaf,hardofhearingordeafblind.
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• Wherepossible,plantohavebothspokenandvisualannouncements • Ifthisisnotpossible,peoplewithimpairedvisioncanbealertedbyagentletapontheirshoulder
or arm • PeoplewhoareDeaforhardofhearingcanbealertedvisuallybyahandmovement,suchasa
discreetwave,orbytappingthepersongentlyontheirshoulderorarm
Ifthereisatelevisionintheemergencydepartmentwaitingroom,makesurethatitdisplayssubtitlesandcanbeaccessedbypeoplewhoareDeaforhardofhearing.
11.5 Family or carer support
Apersonwithadisabilitymayneedsupportwhilewaitingtobeseen,aswellasincommunicatingtheirmedicalhistory,makinginformeddecisionsandgivingconsenttocare.Inanaccidentoremergencysetting,familymembers,carersorpersonalassistantscanassistthepersonwithadisabilityandbeaninvaluablesourceofexpertiseaboutaperson’sdisability,healthandwell-being.
Facilitatethepersonwithadisabilitytobesupportedbyafamilymember,carer,personalassistantoradvocate,wheretheysowish.Thetriagenursemaybethepersonwhomakesthisdecision,whichshouldbecommunicatedtootherstaff
11.6 Assignedstaff
Itmaybehelpfultoassignakeymemberofstafftoassistapersonwithadisabilitytoensurethather/hisrequirementsaremet.Thiscanbeveryimportantforapersonwhohassignificantdisabilitiesorsomeonewhohasnoaccompanyingpersontosupportthem.However,itisrecognisedthatitisnotpossibletofacilitatethisineverysetting.
11.7 Explain medical procedures clearly and accessibly
Ifapersonisundergoinganyprocedure,itisimportanttoexplainwhatisgoingtohappenclearlyand in advance.
Itisparticularlyimportanttoletsomeonewhoisblindorhasimpairedvisionknowwhatishappeningastheywillnotbeabletoseeit.Tellthemaboutanyprocedureyouaregoingtodo,suchastakingbloodorgivinganinjection,andwheretheneedlesitewillbe.
Ifperformingaphysicalexamination,explaininadvancewhereyouplantoexamine(i.e.,touch).
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Explainclearlyandstep-by-stepwhatishappeningateachstage.
Explainalldiagnosticproceduresclearly,suchasanultrasound,rectalexamination,electrocardiogram,anx-rayorMRIscan.Letthepersonknowwhenyoumovebehindascreenorinto another room.
Ifperforminganintimateexaminationaspartofstandardprotocol,ensureachaperoneispresent.
11.8 Integrated Discharge Planning from the Emergency Department
Healthandsocialcareprofessionalsshouldreferto: • Guideline Three: Accessible services-generaladvice,Section3.14,Integrated
Discharge Planning • Guideline Ten: Accessible Hospital Services,Section10.6,Dischargefromhospital-
integrateddischargeplanning • Integrated Care Guidance: A practical guide to discharge and transfer from hospital • Chapter 19. The Emergency Medicine Patient Pathway, The National Emergency
Medicine Programme – A strategy to improve safety, quality, access and value in Emergency Medicine in Ireland
Extract from the National Emergency Medicine Programme Strategy, Section 19.17.4 RecommendationsforPatientDischargeandDeparture
• AllpatientsshouldhaveanappropriatebriefdischargesummarysenttotheirGP • TheEmergencyMedicineProgrammewilldevelopatemplateforEmergencyDepartment
dischargesummariesincollaborationwiththeDirectorateofClinicalStrategyandProgrammesPrimaryCareProgramme
• ThetimeofEmergencyMedicaldischargeandthetimeofEmergencyDepartmentdepartureshouldberecordedforallpatients
• Follow-upcarearrangementsforallpatientsshouldberecordedinthepatient’sEmergencyDepartmentrecords/EmergencyDepartmentInformationSystems
• StandardNationalEmergencyCareSystemsdatasetswillincludefollow-uparrangementsforEDpatients
• Patientsshouldbeprovidedwithself-careinformationaspartofthedischargeprocess(forexample,headinjuryadvice)
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WhereappropriatetotheEmergencyDepartment,makeaplanforcontinuingcareandsupport after discharge.
Safedischargemaymeanthatstaffwillliaisewithotherdisciplines,suchasthePublic HealthNurse,theirGP,thespecialisttreatingtheirprimarydisabilityorotherconditionortheirdisabilitysupportservice.“Multidisciplinaryassessmentisparticularlyvaluableinsupportingthesafedischargeofpatientswithcomplexcareneeds.”:Section19.19.4,PatientDischarge, National EMP Strategy.
AllGPsshouldbeinformedfollowingaserviceuser’sattendanceattheEmergencyDepartmentaspartofstandardprocesses.Wherethispostexists,thismaybethetaskofaGPliaisonnurse.
Assessifanyadditionalsupportsareneededwhenthepersongoeshome,followingtheirEmergencyDepartmentvisit.
Whenapersonisdischargedfromhospital,explainallfollow-upprocedures,medication,after-careorwhenfurtherappointmentsareneeded.Printthisinformationoffinclearprintsothepersonhasittokeep.
Itisimportantthatfamilymembers,carersorsupportpersonsalsounderstandthemedicationregime.Whileitisimportanttorespecttheperson’sprivacy,itisalsoimportantfortheirsafetythatthoseassistingthemknowwhichmedicationshouldbetaken.Carersalsoneedtobetoldwhenandunderwhatconditionsthepersonneedstoreturntothehospital.
Signpostapersontowardsrelevantdisabilityorganisationsforsupportandinformation ifappropriate.
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Accessible maternity services
ThefollowingsectionshouldbereadinconjunctionwithPartOne: Guideline Three: Accessible services - general advice Guideline Four: Communication Guideline Five: Accessible information Guideline Six: Accessible buildings and facilities Guideline Seven: Consent Guideline Eight: Roleoffamilymembersandsupportpersons
12.1 Introduction
Theguidelinesarewrittenintheknowledgethatservicesmaynothavefinancialresourcestoimplementallmeasuresoutlined.However,manyoftheguidelinesarecostneutral,andthey alsoserveasaresourceforhealthandsocialcareprofessionalswhomaybeplanningservicesinthe future.
Theseguidelinesareforallhealthandsocialcarestaffandshouldbereadinconjunctionwiththerelevant Code of Professional Conductandwiththeexistingguidelinesforstaff,includingtheClinical Guidelines of the Institute of Obstetricians and Gynaecologists at the RoyalCollegeof Physicians in Ireland and Midwifery Practice Standards (2010) from An Bord Altranais agus Cnaimhseachais.
An Bord Altranais midwifery practice standardsstatethathealthprofessionalsshouldenhancetheirknowledgeofservicesandsupportsavailabletowomenwithdisabilities,inlinewiththe RoyalCollegeofNursing’s(2007)guidelines.TheRoyalCollegeofNursingguidelines,entitledPregnancyandDisability:RCNGuidanceforMidwivesandNurses,canbeaccessedathttp://www.rcn.org.uk/.
MoredetailisavailableonaccessibleservicesinGuideline Three: Accessible services - general advice; Guideline Four: Communication; Guideline Five: Accessible information; Guideline Six: Accessible buildings and facilities and Guideline Seven: Consent.
12. Guideline Twelve
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Clinicalstaffneedtobeknowledgeableaboutparticularneedsandissuesconnectedwithdisabilityandtohavecorrespondingclinicalskills.Forexample,relevantcliniciansshouldknowaboutepiduralanaesthesiaforsomeonewithspinabifidaorspinalcordinjury.
Itshouldbenotedthatthissectionisprimarilyaboutaccessiblematernityservicesfromthewoman’sperspective.However,patientsandserviceusersmaywishtohaveapartner,familymember,friendoranadvocateaccompanythem,whomayhaveanaccessibilityrequirement.Inthisregard,servicesmayneedtogiveconsiderationtotheirneedsalso;forexample,ablindparentattendingthebirthoftheirbaby.
12.2 Non-judgmental
InaccordancewiththeCode of Professional Conduct,benon-judgmentalandprofessionalincaringforwomenwhoarepregnant.
• Donotqueryherdecisiontogetpregnantnorhercapacitytocareforandnurtureherbaby • Donotassumethatshehasordoesnothaveanyspecificrequirements–ask.Peoplewith
disabilitiesmayhavealotofexpertisearoundspecificneedstheyhaveandhowtheycouldbemet
12.3 Planningforspecificrequirements
Birth or Care plan Abirthorcareplanshouldtakeaccountofanyspecificneedsaserviceusermayhave,andthis
includesaccessibilityrequirementsassociatedwithawoman’sdisability.Ideallyanassessmentoftheseneedsshouldbeconductedatthefirstantenatalbookingvisit.
Participationincareisimportant.Activelyinvolvethewomanintheassessmentandbirthorcareplan.Enablehermakeinformedchoicesateverystep–aboutantenatalcareandclasses,aboutthebirthofherchild,aboutbabyfeeding,aboutsupportwithparentingskillsetc.
Whereappropriate,furtherinformationmayneedtobesoughtfromtheperson’sGP,otherhealthprofessionalsorspecialistservices.Wherecarerequirementsaremorecomplex(forexample,awomanwithmultipledisabilities,intellectualdisabilityorsignificantmentalhealthdifficulties),involvingamulti-disciplinaryteamcanaddressdifferentaspectsofcare.Itmaybenecessarytoholdacaseconferencetohelpformulateacomprehensivebirthorcareplan.
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Ensurethatrelevantstaffareawareofanyrequirementsinrelationtocareortreatmentthatareassociatedwiththeunderlyingimpairment;forexample,theneedtomaintainaparticularpostureforsomeonewithaspinalinjury.
Planahead.Forexample: • Bookaccessibleaidsandequipment,suchasaheight-adjustableexaminationcouchorahoist
forawomanwithaphysicaldisability • Ensurethedeliverysuiteisaccessible
Somewomenwithdisabilitieswillbenefitfromseeingthesamehealthpractitionereachtimetheyattendanantenatalclinic.Wherepossible,factorthisintotheschedulingofappointments.
Appointastaffmembertoakeyworkerroleinsituationswhereitisrequired;forexample: • Whereawomanhassignificantdisabilitiesor • Awomanwithdisabilitieswhodoesnothavethesupportofapartneravailable.Thiskeyworker
shouldhavereceivedappropriatetraining
Sharerelevantinformationwiththecareteamandotherstaff Itisessentialthatrelevantinformationissharedwithstaffinvolvedinthewoman’scareatdifferent
stagesofthecarejourney;forexample,inantenatalcare,duringbirthandduringpostnatalcare.Thiscanminimisetheneedforawomanwithadisabilitytonegotiatethesameissuesatdifferentstagesofhercareorwhenshemeetsdifferenthealthpersonnel.
• Includerelevantinformation;forexample,communicationpreferencesonherchartandanITsystemforbookingquestionnaires,whereavailable
• Clinicalstaff,includingmedical,nursingandtherapystaff,shouldbeinformedofspecificelementsofthebirthorcareplan
• Informationrelevanttocareandsupportondischargeshouldbepassedontorelevantstaff,suchasthewoman’sGP,publichealthnurseorsocialworker
• Relevantstaff,suchascatering,housekeepingandreceptionstaffinthehospital,shouldbeinformedofanyindividualrequirementsrelevanttotheirroles;forexample,anyspecialrequirementsaroundmanagingmeals
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Accessible premises See Guideline Six: Accessible buildings and facilities for more information.
Ensurethatbuildingsareeasytoaccessandgetaround: • Providehandrailsandseatingwherepeoplehavetowalksomedistancebetweendepartments • ProvideclearsignageinplainEnglishtoenablepeoplefindtheirway
Provideopenaccessibletoiletstoservewaitingareas,thedeliverysuiteandthewards.Maintainingoodworkingorder.
Provideaccessibleshowerandbathfacilitiesonthewards.SeeNationalDisabilityAuthority’sBuilding for Everyone www.universaldesign.ie/buildingforeveryone,SanitaryServicesfortheappropriatetechnicalstandards.
Ensurethatthebedlayoutinthedeliverysuiteandthematernitywardfacilitatesawomanwhousesamanualorpoweredwheelchairorawomanwhohasimpairedvisiontomovearoundeasily.
Providegoodlightingeverywhere:inreception,theantenatalclinic,thedeliverysuiteandonthepostnatalward.Thisbenefitseveryone,includingthosewhoarepartiallysighted.
Ensurethatwaitingrooms,corridors,consultationroomsandwardsarefreeofobstaclesthatcouldimpedemobilityorbeahazardforsomeonewhocannotsee.Forexample:
• Donotstoreequipmentinacorridorwhereitcouldblockcirculationorpresentahazard • Do not store cleaning materials in an accessible bathroom and • Ensurethatleadsandwiresfromequipmentorvacuumcleanersarenotlefttrailingonthefloor
wheretheyareahazardandmaytripsomeone
Accessible equipment Ensurethatequipmentisaccessibleorthatanappropriatealternativeisoffered.Forexample: • Provideheight-adjustableexaminationcouchesorbeds,withahoistavailable,sothatawoman
cantransfersafelyonandoff • Provideweighingscalesthataresuitableforawheelchairuser • Provideheight-adjustablebabycotsincubatorsandbabybathingfacilitiessothatwomenwith
physicaldisabilitiescanfeed,lift,holdandbathetheirbabies;and
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• Ensurethatappropriateequipmentandaidscanbeusedwhetherthewomanisstanding,seatedorlyingdown
Appointments and waiting room See Guideline Three: Accessible services – general adviceforinformationonappointmentsand
waitingrooms.
Communicateaboutappointmentsinthewaythatisaccessiblefortheindividual;forexample,bye-mailortextmessageforsomeonewhoisDeaforhardofhearing,orbyphoneore-mailforsomeonewhoisblindorvisionimpaired.Asktheindividualwhattheircommunicationneedsare.
Letpeopleknowapproximatelyhowlongtheyhavetowaitandwheretheyhavetogowhentheyare called.
Haveasystemwhichenableswomenwhohavedifficultyseeingorwomenwhohavedifficultyhearingtoknowwhentheyarebeingcalled.TicketingsystemswithvisualelectronicdisplaysareaccessibletosomeonewhoisDeaf.However,thereneedstobeanaudiocomponentforsomeonewhocannotsee.Ifthisisnotpossible,someonewhohasavisionorhearingimpairmentcouldbeinformedthatitistheirturnbyagentletapontheshoulder.
Ifyouhaveatelevisioninthewaitingroomforantenatalappointmentsoronthematernityward,makesurethatithasafacilityforsubtitlesandisaccessibletopeoplewhoarehardofhearing or Deaf.
Itcanbehelpfultoscheduleappointmentswithaninterpretersothatwaitingtimesandcostofinterpretiveservicesareminimised.
Information Provideinformationabouttheaccessibilityofyourpremisesandservices;forexample,inan
informationbookletoronyourwebsite.Thiscouldcoverinformationaboutaccessibleparking,accessibilityfeaturesofyourbuildingandanycommunicationaidsorothersupportsavailable.
Provideinformationonwhattodoandwhotocontactifcomplicationsemergeorincase ofemergency.
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Yourinformationformothersshouldcoverissuesaroundpregnancyandmentalhealth,includingpost-nataldepression.
• Encouragewomentodiscloseiftheyhavementalhealthissuesorareonmedicationsothattheycangetappropriatesupportbotharoundtheirpregnancyandtheirmentalhealth
• Provideinformationoncounsellingsupportsavailable,supportthatcanbereceivedbytelephone,andprovideinformationfornewmothersaboutpost-nataldepressionsupportgroupsand counselling services
Ensurethatinformationonthematernityservices,childbirthandinfantcarecanbeprovidedindifferentformatsonrequestandwherepracticable.Youmaybeaskedtoprovideinformationinlargeprint,onaudio,bye-mail,throughyourwebsiteorinBraille.
AllinformationshouldbeinplainEnglish.Aservicemaytakestepstotranslatetheinformation intootherlanguageswherenecessary;however,thisshouldalsobewritteninastylewhichiseasyto understand.
Ensurethereisatextdescriptionofanypicturesordiagrams,thatcanexplainthemto someonewhocannotsee:thisisessentialwhereadocumenton-lineisbeingreadusingscreen-readertechnology.
MakeuseofEasy-to-Readhealthleafletsonspecificproceduresthatareavailable.EasytoReadisthetermforverysimplifiedtextwithpictures,whichisimportantforpeoplewithliteracyproblemsorlimited English.
Ante-natalclassescanusevisualteachingaidswithsubtitlestocommunicatewithwomenwhoarehard of hearing or Deaf.
Videoclips,audioclipsandDVDscanenhancetheaccessibilityofinformationtowomenwithdisabilities.Keepinformationinaudioandvideoshortasitcanbedifficulttoretainalotofinformationfromsuchsources.Womenwhohavedifficultyretaininginformationcangoovertheseagain and again.
For more see Guideline Five: Accessible information.
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Consent Please read Guideline Seven: Consent and the National Consent Policy for further information
on consent.
Toenableawomantogiveinformedconsenttoanyprocedure,appropriateinformationneedstobegivenandcommunicatedinawaythatmeetstheaccessibilityneedsofthewoman.Staffshouldexplaininaclearandaccessiblewaywhatwillhappenifawomanneedsaninterventionofanytype.Someserviceusersmayneedadditionaltimeandsupport,including,ifnecessary,repeatinginformationtohelpthemunderstand.
Itmustnotbeassumedthataserviceuserlackscapacitytomakeadecisionsolelybecauseoftheirage,disability,appearance,behaviour,mentalcondition(includingintellectualdisability,mentalillness,dementiaorscoresontestofcognitivefunction),theirbeliefs,theirapparentinabilitytocommunicate,orthefactthattheymakeadecisionthatseemsunwisetothehealthorsocialcareprofessional.Youshouldpresumethatallwomenhavethecapacitytoconsenttoaparticularprocedureorintervention,unlessthereisanadequatetriggerindicatingotherwise.
Allserviceusersmayexperiencetemporarylackofcapacityduetosevereillness,lossofconsciousness or other similar circumstances.
Alwaysgetconsenttopassonanyconfidentialinformationaboutaccessibilityrequirementsortopassoninformationtoothermedicalorsupportstafforthewoman’sfamily.
Flexibility Servicesmayneedtobeflexiblesothattheycanmeettheneedsofaserviceuserwithadisability. Whenmakingappointmenttimes,takeintoconsiderationthatawomanwithadisability: • Mayfindearlymorningappointmentsdifficulttoattendduetomedication,additionaltime
neededtoprepareetc;and • Mayneedextratimetogettoanantenataloroutpatientappointment
Beopentoprovideone-to-onesupporttoenableawomanwithadisabilitytoparticipateinantenataltrainingandtosupportbabyfeedinganddevelopmentofparentingskills.
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Wherepossible,beflexibleaboutofferinghomevisitsasanalternativetocomingtothehospital orbabyclinicwhereawoman’sdisabilitywouldmakethatparticularlychallenging.Thismightincludeprovidingantenatalvisitsathome,teachingandsupportingawomanwithparentingskillsathome,orhavingthebabyweighedathomeratherthaninthebabyclinic.Thismaynotbefeasiblein some settings.
Allowflexibilityinvisitingtimessothatthewoman’spartnerorcarersupportpersoncanassistandsupportherwithheractivitiesofdailylivingandwithbabycare.
12.4 Antenatal services
Antenatal care Factorinlongerappointmentswherenecessary.Itmaytakelongertocommunicatewithsomeone
withaspeechorhearingdisabilityorsomeonewithanintellectualdisability.Thereshouldbesufficienttimegiventohearanyconcerns,toexplainwhatishappeningandtoensurethewomanunderstandswhatisbeingsaid.
WhereantenatalcareissharedbetweentheGPandthehospital,itisessentialtoensurethereisgoodcommunicationaboutanyaspectofthewoman’srequirementsthatmaybeassociatedwithherdisability.
Explainthestepsinvolvedinanyprocedureortestinadvance,inclearandsimplelanguage.Theseprocedurescanincludebloodtests,urinetests,bloodpressureandweightchecksorultrasoundexaminations.Forsomeonewithahearingdifficultyormentalhealthimpairment,usingdiagramsisagoodwaytoexplain.Explaininadvancewhatishappeningtosomeonewhocannotsee.
Awomanwithamobilitydisabilitymayneedtositdownorliedownduringanx-rayorotherdiagnosticexamination.Ifthisisnotpossible,discusswiththewomanandtakeanyguidanceshemayhaveonhowtoproceedintoconsiderationwhenexaminingalterativeoptions.
Provideasafeandsupportiveenvironmentforwomenwithmentalhealthdifficultiestodiscloseanddiscusstheirconcerns.Whereneeded,makeareferraltothementalhealthteamortothementalhealthsupportmidwifeifthereisoneavailable.
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Antenatal classes Antenatalclassesshouldbeheldinplacesthatarephysicallyaccessible.
Wherepossible,ante-natalclassesshouldbedesignedtobeinclusive,whereclass content,informationandpresentationmethodsareaccessibletoeveryoneincludingmothers withdisabilities.
Exercisesandtechniquesshouldbeadaptedasappropriatewhereawomanhasa physicaldisability.
• Awomanwhocannotseewillneeddiagramsorexercisesexplainedorally • AwomanwhoishardofhearingorDeafmayneedtositclosetothefacilitatorsothatshecan
hearorlipread • Informationtotakeawayshouldbeavailableinarangeofaccessibleformatstosuittheneedsof
individuals
Antenataltutorsshouldbeabletotellwomenwithphysicaldisabilitiesaboutadaptivetechniquesoraids.Itmayalsobehelpfulforthemtoliaisewithstaffinthedeliverysuitewhereappropriate,toensurethattheyalsohavethisinformation.
Itisnotalwayspossibletocaterforawomanwithadisabilityinamainstreamante-natalclass,andone-to-onesessionsmayberequiredinparticularcases.
Womenwithintellectualdisabilitiesmayalsobenefitfromone-to-oneantenatalsessionswherematerialcanbeexplainedinasimplewayatanappropriatepace.Forexample,ifawomanwithanintellectualdisabilityisundergoingaplannedcaesarean,theprocedureshouldbecarefullyexplainedinsimplelanguage.
12.5 Giving birth
Itisimportantatthisstagetospendextratimewithawomanwithadisabilitytolistenandrespondtoanyconcernsshemayhave.
Ensurethatthemidwifeandclinicalteamarefamiliarwiththespecificrequirementsofawomaninrelationtoaccessiblecareand/oranyspecialcommunicationissuestheymayhave.
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Ensurethattheteamhavedevisedwaystocommunicatewiththeserviceuserappropriately. Forexample:
• Awomanwithahearingimpairmentoranintellectualdisabilitymayfinddiagramsandgesturesauseful aid to communication
• AwomanwhoisDeaforhardofhearingcanagreesomesignsorgestureswhichcanactasalternativesifsheisunabletolipreadduringlabour
• Awomanwhoisvisuallyimpairedorwhohasanintellectualdisabilitymayneedverbalexplanationstounderstandwhatishappening
• Awomanwithanintellectualdisabilitymayneedamidwifeormidwiferyassistanttostaywithherandgivereassurancetoreduceanxietyorfear.Keepinformationshortandsimple,nottoomuchto take in
• Awomanwithaphysicaldisabilitymayneedtohaveassistancetomovesafelyandchangeherpositionduringlabour,andmayrequireanadditionalmemberofstafftoassist
Explainclearlyandstep-by-stepwhatishappeningateachstageduringanexamination,andthenwhatwillhappendependingonthefindings;forexample,ifthewoman’scervixisdilated,ifherwatershavebroken,ifsheisbeingreferredforanemergencycaesareansectionorifsheneedsaforcepsdelivery.
Explaininformationaboutchoicesinpaincontrolclearlyandthenwhatishappeningwhenpaincontrolisinstituted.Explainthatusinggasandairmaymakesomeonefeeldisorientated.
Duringlabour,ask‘Whatcanwedoforyou?”and“HowcanImakethepaineasierforyou?”.
12.6 Careintheward
Ifitispossible,itmaybehelpfulforawomanwithadisabilitytohaveaprivateroom.Thisdoesnotmeanthatapersonwithdisabilitiesreceivespreferentialtreatmentaboveotherserviceusers,butratherthattheirspecificneedsaretakenintoconsiderationaspartoftheprovisionoftheircare. Forexample:
• Providingquietcanbeimportantforawomanwithmentalhealthdifficultiesorawomanwithhearingdifficulties
• Someonewithavisionimpairmentmayfinditeasiertoorientthemselvesinasingleroomthanonabusyward
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Forawomanwithhearingdifficulties,ifpossible,thebedshouldfacethedoorsothatthewomancanseewhenacateringassistantornurseenterstheroom.Ifthisisnotpossible,thestaffmembershouldmaketheirpresenceknowntothewoman.
Whereawomanwithadisabilityissharingaward,trytoensureherbedisplacedclosetothewashingandtoiletfacilities.
Helporientatewomentothelayoutandfacilities.Showthemthelocationoflightswitches,toiletsandshowers,otherfacilitiesonthewardforthebabyandhowtheycansummonhelp.Whilethisshouldbedoneforallpatientsandserviceusers,itisparticularlyimportantforserviceuserswhohaveavisualimpairmentoranintellectualdisability.
Provideheight-adjustablecotsforwomenwhorequirethistoenablethemcarefortheirbabyasindependentlyaspossible.
12.7 Post-natal care and after discharge
Communicateinformationtoassistwomenwithdisabilitiesintheirrecoveryfrombirthandindevelopingthepracticalskillsofparentingandself-care.Communicateinawaythatisaccessibletotheserviceuser.Thismaytakeadditionaltimedependingontheneedsofthewoman.SeeGuideline Four: Communication for more information.
Provideinformationinasuitableformattotakeaway.Forexample,thiscouldbeinlargeprint,bye-mail,onaudioorinpictorialEasytoReadformat,asrequiredintheparticularcase.SeeGuideline Five: Accessible information for more information.
Giveadequateinstructionsonpostnatalexercisesandrecoveryafterbirthtowomenwithdisabilities.Aphysiotherapistmaybeabletoassistwomenwithphysicaldisabilitiesaboutappropriatepelvicfloororotherexercisesthatarerecommendedforrecovery.
Providesupport,assistanceandguidanceonthepracticalaspectsofbabycare.Forexample,thephysiotherapistcanassistthewomanwithtechniquesforliftingandholdingherbaby,provideadvice on useful aids etc.
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Communicatesensitivelyandinwaysthewomancanreceiveandunderstand,onanyareasofdifficultyordistress,suchasifitisacrisispregnancy,ifthebabyisillorhasadisabilityoronthedeathofthebaby.Ensurethereiscounsellingavailablethatiscapableofcommunicatingwiththewomanandherpartnerinwaystheycanreceiveandunderstand.
ManywomenwhoareDeafseedeafnessnotasadisabilitybutasanintrinsicpartoftheiridentity.Respectthisperspectivewheninformingherabouttheresultsofanyhearingtestsonherbaby.
12.8 Discharge and follow-up
Itisimportanttoplanforawoman’saccessibilityrequirementsandhermedicalandsupportneedsondischarge.Preparationfordischargemayneedtoincludeacaseconferencebetweenthematernitystaffinthehospitalandpublichealthnurse,occupationaltherapist,socialworkerandGPstoensuretheneedsofmotherandchildaresupportedwhenshereturnshome.Withthewoman’sconsent,ensurethatthedetailsofawoman’saccessibilityrequirementsareincludedinaplanforpostnatalcareandfollow-upappointments.
Explainclearlywhenandwherefollow-upappointmentswilltakeplace,andwhenshewillseethe
publichealthnurseandattendthebabyclinictogetthebabyweighed.Providethisinformationonappointmentsinanaccessibleformattotakeaway,suchaslargeprint,bye-mail,inaudioortextformat,asrequired.
Additionalsupportsmayberequireddependingonthecircumstancesofthiscase.Ensurethatthewomanisfullyinvolvedandinformedaboutplans.Forexample:
• Itmaybenecessarytoorganiseadditionalparentingsupportathome,suchasahomehelporapersonalassistant
• Specificsupportmayneedtobeorganisedfromapublichealthnurseinbreastfeedingathome • Specificsupportmaybeneededforpostnataldepression
Publichealthnursescanhaveaveryimportantroletoplayintheprovisionofadvice,informationandsupportduringthepostnatalperiod.Itisimportantthatfollow-upvisitsareputintotheirschedulesothatthenewmothersreceivethissupport.
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12.9 Post-natal depression
Ensurethereisaplanfortheprevention,earlydetectionandmanagementofperinatalmentalhealthproblemsandpostnataldepression.Identifywomenatrisk,facilitateappropriatesupportandaccessarangeofsupportsforthem.
Explainclearlyandinnon-judgmentalwayshowtoaddresspostnataldepression.
Provideaccessiblewritteninformationaboutpostnataldepressionandavailablehealthandsupportservicesforwomenexperiencingpostnataldepression.
12.10 Goodpracticeguidelinesforwomenwithspecificdisabilities
A woman with physical disabilities Discusswithawomanwithaphysicaldisabilityadditionalsupportthatcanbeprovidedbya
physiotherapistincarryingoutexercisesandbreathingasherpregnancydevelopsandinpreparingforchildbirth.Aphysiotherapistmayalsoassistthewomanindevelopingtechniquesforliftingandcarryingherbaby.
Planaheadforanoccupationaltherapisttovisitawomanathomepriortothebirthtoseeifthereisanyequipmentoradjustmentstothewoman’shomethatneedtobemadeinadvanceofbringingababyhome.Thiscouldincludeaccessiblebabybathsorchangingareas.
Womenwithphysicaldisabilitiesmayexperiencedifficultiesintheirmobilityasaresultofweightgainduringpregnancy.Apregnantwomanwhoisawheelchairusermayneedalargerwheelchair,orawomanwithawalkingdisabilitymayneedtoavailofamobilityaid.
Aheight-adjustablebabycotortabletochangeababy’snappycanhelpanewmotherto beindependent.
Putplansinplacetoprovidesupportathomewhereappropriateandpossible. • Anewmothermayneedhomehelp/anassistanttoassistherinthecareofherbaby,suchasin
nappychanging,liftingherbabyfromthecotorbathingthebaby • Homevisitsmayalsoberequiredifitisdifficultforawomanwithaphysicaldisabilitytoattenda
babyclinic
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Awomanwithmentalhealthdifficulties Staffinvolvedinmaternitycareshouldprovideasafeandsupportiveenvironmentwhereamother
candiscloseanddiscussanymentalhealthissuesandbereferredtosourcesofsupportandcareinrelationtoanymentalhealthissues.
Ifavailable,offerawomanwithmentalhealthdifficultiesaccesstoaspecialistmentalhealthserviceormentalhealthsupportmidwifeinthehospital.
Liaisonbetweenstaff,suchasmaternitystaff,physiotherapists,occupationaltherapistsetc.,andacommunitymentalhealthteamormentalhealthnurseshouldtakeplacewhereappropriate,withthewoman’sconsent.
Midwivesanddoctorsinvolvedinmaternitycareshouldbecomefamiliarwithawoman’smedicationandmentalhealthhistorywhereappropriate.Discusswithapregnantwomantheuseorwithdrawalofmedicationsduringherpregnancyandbirth,particularlyifmedicationthatsheistakingcouldbeharmfultothefoetusorababywhoisbreastfed.
Ifawomanistransferredfromapsychiatrichospitalorward,shewillneedtobesupportedbyamentalhealthnurseandanymedicationmanagedappropriately.
Womenwithmentalhealthdifficultiesoftenexperienceanxietyattendinganappointment. • Taketimetolistentotheconcernsoranxietiesexpressedbywomenwithmental
healthdifficulties • Taketimetoexplainwhatwillhappenduringanexaminationandatdifferentstagesofthe
birthprocess • Givereassuranceandsupportwherethisisneeded • Toalleviatesignificantanxiety,ifappropriateandwherepossible,tryandensurethatthewoman
canwaitinaquietplaceandthatshedoesnothavetowaittoolongfortheappointment
Ifthewomanhasgivenbirthbefore,askherifshehadexperiencedanxietyordifficultyandfindoutwhathelpedherandwhatdidnothelp.Askherwhatwouldhelpherduringhercurrentpregnancyand forthcoming birth.
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Itisimportanttoplanwiththewomanthesupportthatcanbeprovidedbythewoman’sGP,thepublichealthnurse,andthecommunitymentalhealthteamaftersheisdischargedfromhospital.
Provideinformationonadvocacyservices,supportgroupsandservicesforpost-nataldepression.
A woman with a vision impairment Whenyoutalktoawomanwithavisionimpairment,giveyournameandexplainyourrole.Lether
knowwhensomeoneelseentersorleavestheroom.
Allowaguidedogtoaccompanyawomantothehospitalforantenatalappointmentsandclasses,anddiscusswithherwhattheoptionsareregardingbringingaguidedogwithherwhensheisaninpatientandduringthebirth.
Explainallexaminationsandproceduresinadvance,stepbystep,tosomeonewhocannotseewhatyouaredoing.
Providewritteninformationinanaccessibleformatwhichtheserviceusercanaccess;forexample,largeprint,e-mailorBraille.
Explainthelayoutoftherelevantpartsofthehospital,suchasthereception,waitingroomandtoiletfacilities.Inthebirthingsuiteorintheward,explainwherethedifferentfacilitiesare,includingthelocationofthetoiletandshowerandthecallbellforassistance.
Offertoguideawomanwithimpairedvisiontowheresheisgoing;forexample,toaseatinthewaitingroom.
Provideaprivatespacewhereshecangiveoralanswerstofillinanyform,withoutbeingoverheard.
Ensureawomanwithavisionimpairmentisletknoworallywhenitisherturntobecalled.Offerherassistancetogototheexaminationortreatmentroom.
Ifawomanwithimpairedvisionishavingafoetalultrasoundorexamination,explainclearlyandstep-by-stepwhatishappeningonthescreen.Facilitateawomantohearherbaby’sheartbeatthrough vibration.
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Itisimportanttoexplainclearlyanycomplicationswhererepeatedscanstakeplace.Wherepossible,arrangefortheultrasoundtobeprintedinlargeprintformatandarrangeforittobeemailedtothewomanifrequested.
Explainproceduresclearlyandstepbystepduringthebirth.
Provideclearguidanceonhowtocareforherbabytakinghervisualimpairmentintoconsideration.Forexample,giveguidanceonhowtoexpressmilkortomakeupformulafeeds.
A woman who is Deaf or hard of hearing Ahearingloopenhanceshearingforsomeonewhousesahearingaid.Aportableloopsystemcan
enhancecommunicationatdifferentlocations;forexample,inthewaitingroom,thebirthingsuiteandtheward.
• Letserviceusersknowifyouhaveoneavailable • Checktheloopsystemregularlytoseethatitisworking
SomepeoplewhoareDeaforhardofhearinglip-read. • Positionyourselfface-to-faceinfrontofthewomanwhenspeakingandwithgoodlighton
yourface • Donotspeakwhenwalkingawayorfrombehindatheatremask • Speakclearlyandmakeeyecontact • Rememberthatshemaynotfullycatchorunderstandwhatyouaresaying,sousediagrams,
gesturesandprovidewritteninformationaswell.Forexample,ifthereisatestbeingconductedonthemotherorbaby,athumbs-upcansignalthatalliswell
IfaDeafwomanhasrequestedanIrishSignLanguageinterpreter,putaplaninplaceforthistobeprovidedatsubsequentvisitsandwhenshecomesintohospitaltogivebirth.Plansmayalsoneedtobeputinplaceinadvanceofanunplannedoremergencyadmission.
Wherepartnersareattendingantenatalclassesoratthebirth,makearrangementsforaccesstoIrishSignLanguageInterpretationwherethepartnerisDeaf.
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Unlessthewomanrequestsitorinanemergencywhenthereisnoalternative,avoidrelyingonthewoman’spartnertoactastheinterpreter.Ifheisneededbyhertosupportherthroughlabourpainorchildbirth,itisdifficulttoalsoactasinterpreter.Inadditiontothis,IrishSignLanguageInterpretersarequalifiedtointerpretalloftheinformation.Apartner,familymemberorfriendmaynotdosoforanumberofreasons;forexample,inanefforttoprotectaserviceuserfromworry,etc.
Duringlabour,itmaybedifficultforawomantolipread.Ifthisisthecase,anadditionalmemberofstaffmaybeneededtohelpwithcommunication.Priortolabour,agreewiththewomansomevisualsignsorgesturesthatstaffcanusetohelpcommunicate.
ProvidewomenwhoarehardofhearingorDeafwithbabyalarmsthatvibratewhenthebaby cries.Itisbestifsheislocatedinasingleroomonthewardasthealarmmaypickupthecries of other babies.
A woman with an intellectual or cognitive disability Awomanwithanintellectualorcognitivedisabilitywillneedinformationexplainedtoherinvery
simplelanguageandsimpletermsthatshecanfollow.Useofdiagramscanbehelpful.Rememberthelevelofunderstandingmayvaryforeachserviceuser.
Awomanwhohasothercommunicationdifficulties,othermedicaldifficultiesoranotherconcurrentdisability(forexample,mobility,visualimpairment,ormentalhealthdifficulties,etc.)willneedadditionalsupportduringpregnancy,childbirthandafterwards.
Awomanwithanintellectualorcognitivedisabilitymayrequireadditionalsupportfromaphysiotherapisttosupportherbreathingduringpregnancyorbirth.
Awomanwithanintellectualorcognitivedisabilitymayexperiencedifficultiesincommunicatingpainduringlabour.Itisimportanttoanticipatethisandtoensureshehasassistanceincommunicatingandmanagingpain;forexample,beingaccompaniedbyafamilymemberorcarerduringlabourmayprovideadditionalreassuranceforher.
Itisimportanttoexplainsimplyandclearlyinadvanceaboutanyprocedurestobeundertaken,suchasvaginalexaminations.
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Thechoicesandpossiblecomplicationsofdifferentwaysofgivingbirth(naturalbirthorcaesareansection)oruseofepiduralpainreliefshouldbeexplainedsimplyandclearlytoenableinformedconsent to be obtained. See Section Fifteen: Consent for more information.
Informationmayneedtoberepeatedseveraltimes,asawomanwithanintellectualdisabilitymaynotunderstandthefirsttimesheisgiveninformation.Checkthatwhathasbeensaidisunderstood.
Informationmaynotbewellretainedfromonevisittothenext,soensureitisrepeated.
Maternityservicesshouldliaisewiththewoman’ssupportnetwork,includingherfamilyandserviceprovider,whereappropriate,toensurethatherneedsareunderstoodandmet.
Amulti-disciplinarycaseconferencemayneedtobeorganisedwhenawomanwithanintellectualdisabilitybecomespregnanttoplanappropriatecareandsupportforherduringpregnancy,duringthe birth and on discharge.
Goodcoordinationisrequiredtoprovideappropriatecareandsupportafterdischargeincludingsupportincaringforthebaby.
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SowneyMandBarrO(2006)‘Caringforadultswithintellectualdisabilities:perceivedchallengesfornursesinaccidentandemergencyunits’,Journal of Advanced Nursing,55(1)36-45
SowneyMandBarrO(2007)‘Thechallengesfornurseswithintheaccidentandemergencycareservicecommunicatingwithandgainingvalidconsentfromadultswithintellectualdisabilities’,JournalofClinicalNursing,16(9),1678-1685
SpinalInjuriesIreland(2004)TheRealityoflivingwithaSpinalCordInjury.Dublin:Spinal Injuries Ireland.
SpinalInjuriesIreland(2009)The Experiences of Living with a Spinal Cord Injury in Ireland: the physical and psychological impact.Dublin:SpinalInjuriesIreland.
StateofNewYorkDepartmentofHealth(2008)People First: Communicating with People with Disabilities. New York: Department of Health.Accessedat:http://www.health.ny.gov/publications/0951.pdf
StevensLandBushC(2011)Your next patient in A&E may have an Intellectual Disability. Understanding Intellectual Disability and Health.London:StGeorge’sUniversityofLondon.Accessedat:http://www.intellectualdisability.info/how-to../your-next-patient-in-a-e-may-have-an-intellectual-disability
StoryMF,SchwierEandKailesJI(2009)‘Perspectivesofpatientswithdisabilitiesontheaccessibilityofmedicalequipment:Examinationtables,imagingequipment,medicalchairs,andweightscales’,Disability and Health Journal,2(4),169-179
SullivanWF,HengJ,CameronD,LunskyY,CheethamT,HennenB,etal.(2006)‘Consensusguidelinesforprimaryhealthcareofadultswithdevelopmentaldisabilities’,Canadian Family Physician,52(11),1410–8
SullivanWF,BergJM,BradleyE,CheethamT,DentonR,HengJ,HennenB,JoyceD,KellyM,KorossyM,LunskyY,andMcMillanS(2011)‘Primarycareofadultswithdevelopmentaldisabilities:Canadianconsensusguidelines’,Canadian Family Physician,57(5),541–553
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SweenyJF(2004)‘Beyondrhetoric:accesstomainstreamhealthservicesforpeoplewithanintellectualdisabilityinIreland’,Learning Disability Practice,7(1),28-33
ThackerA(2002)Clinical Communication. Understanding Intellectual Disability and Health. London:StGeorge’s,UniversityofLondon.Accessedat:http://www.intellectualdisability.info/how-to../clinical-communication
TorrJ,IaconoT,GrahamMJ,andGaleaJ(2008)‘Checklistsforgeneralpractitionerdiagnosisofdepressioninadultswithintellectualdisability’,JournalofIntellectualDisabilityResearch,52(11),930-41
TurnerBJ,FlemingJ,OwnsworthTandCornwellP(2011)‘Perceivedserviceandsupportneedsduringtransitionfromhospitaltohomefollowingacquiredbraininjury’,Disability and Rehabilitation,33(10),818-829
UnitedStatesAccessBoard(2002)Americans with Disabilities Act (ADA) Accessibility Guidelines for Buildings and Facilities.Washington:UnitedStatesAccessBoard.Accessedat:http://www.access-board.gov/adaag/html/adaag.htm
UnitedStatesAccessBoard(2004)Americans with Disabilities Act and Architectural Barriers Act Accessibility Guidelines.Washington:UnitedStatesAccessBoard.Accessedat:http://www.access-board.gov/ada-aba/final.pdf
UniversityofWesternOntario(2002)‘GuidelinesforManagingthePatientwithaDevelopmentalDisabilityintheEmergencyRoom’.Clinical Bulletin of the Developmental Disabilities Program. Ontario:UniversityofWesternOntario.Accessedat:http://www.ddd.uwo.ca/bulletins/2002Mar.pdf
ValuingPeopleSupportTeam(2009)Working Together: Easy steps to improving how people with a learning disability are supported when in hospital. Bristol: Home Farm Trust.
WahlbeckKandHuberM(2009)Access to Health Care for People with Mental Disorders in Europe.Vienna:EuropeanCentreforSocialWelfarePolicyandResearch.
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WebAccessibilityInitiative(undated)Web Content Accessibility Guidelines[WCAG].Accessedat:http://www.w3.org/WAI/
WebAim(2014)Web Aim: Web Accessibility in Mind.Accessedat:http://webaim.org/techniques/word/
WebbJandStantonM(2009a)‘Workingwithprimarycarepracticestoimproveservicedeliveryforpeoplewithlearningdisabilities–apilotstudy’,British Journal of Learning Disabilities,Vol37:3
WebbJandStantonM(2009b)‘Betteraccesstoprimaryhealthcareforadultswithlearningdisabilities:evaluationofagroupprogrammetoimproveknowledgeandskills’,British Journal of Learning Disabilities,37(2),116-122
WessB(2003)Health Literacy: A manual for clinicians.Chicago:AmericanMedicalAssociationFoundation&AmericanMedicalAssociation.Accessedat:http://www.acibadem.com.tr/saglikprofesyonelleri/upload/pdf/literatur40.pdf
WhileAandClarkLL(2009)‘Overcomingignoranceandstigmarelatingtointellectualdisabilityinhealthcare:apotentialsolution’,Journal of Nursing Management,18,166–172
WhiteheadM(1991)‘Theconceptsandprinciplesofequityandhealth’,Health Promotion International,6(3)217–228
WoodDandHallA(2007)‘ContinuityofCaretoPreventEmergencyRoomUseAmongPersonsWithIntellectualandDevelopmentalDisabilities’,Journal of Policy and Practice in Intellectual Disabilities,4(4),219–228
WoodsRandDouglasM(2007)‘Cervicalscreeningforwomenwithlearningdisability:currentpracticeandattitudeswithinprimarycareinEdinburgh’,British Journal of Learning Disabilities,35(2),84–92
WorldHealthOrganization[WHO](2001)Internationalclassificationoffunctioning,disabilityandhealth.Geneva:WHO.Accessedat:www.who.int/classifications/icf/en/
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WorldHealthOrganization[WHO](2011)worldReportonDisability.Geneva:WHO.
WullinkM,vanSchrojensteinLantman–deValkH,vandenAkkerM,MetsemakersJandDinantGJ(2007)‘Improvingthetransferofcaretogeneralpracticeforpeoplewithintellectualdisability:developmentofaguideline’,Journal of Policy and Practice in Intellectual Disability,4,241-7
YeeSandBreslinML(2010)‘Achievingaccessiblehealthcareforpeoplewithdisabilities:WhytheADAisonlypartofthesolution’,Disability and Health Journal,3(4),253-261
ZhangHamptonN,ZhuYandOrdwayA(2011)‘AccesstoHealthServices:ExperiencesofWomenwithNeurologicalDisabilities’,JournalofRehabilitation,April-June2011,77:2
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Specialist disability organisations
Thereareanumberofdisabilityservices,serviceproviders,advocacyservicesandcarersupportorganisationsavailabletosupportserviceusers.TheCitizensInformationBoard,DisabilityManagersintheHSEandotherumbrellabodieswillbeabletoguideyouintherightdirection.
Specialistdisabilityorganisationscanhaveawealthofpracticalinformationonmatterslikecommunication,accessibility,andday-to-daymanagementandlivingwithaparticularcondition.
Whileitisnotpossibletolisteverydisabilityorganisationinthisguidance,theCitizensInformation Boardpublishesalistofnationalvoluntaryorganisations,includingdisabilityorganisations. www.citizensinformationboard.ie/publications/voluntary_sector/downloads/directory_of_volunteers2008.pdf.
Foralistofvoluntarymentalhealthorganisations,seewww.citizensinformation.ie/en/health/mental_health/voluntary_mental_health_organisations.html
Manyorganisationsworkingwithpeoplewithspecificconditionscanbefoundviaoneoftherelevantumbrella bodies.
Additional Useful Resources
General guidance
Guidance on accessible buildings and places
TheNationalDisabilityAuthority’saccessibility toolkitwww.accessibility.ieprovidesgeneralinformationonhowtomakeservices,buildings,information,andwebsitesmoreaccessibletopeoplewithdisabilities.Thiswebsiteisupdatedregularly.Guidanceonaccessiblebuildingsandplaces
TheDepartmentoftheEnvironment,HeritageandLocalGovernment: BuildingRegulations2010.TechnicalGuidance Document M Access and Use
Further information Reference
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Guidance on accessible buildings and places
Guidance on safe evacuation
Guidelines on accessible information and accessible formats
www.environ.ie/en/Publications/DevelopmentandHousing/BuildingStandards/FileDownLoad,24773,en.pdf TheNationalDisabilityAuthority’sBuildingforEveryone:www.universaldesign.ie/buildingforeveryone.
TheIrishWheelchairAssociationhavedevelopedBestPracticeAccessGuidelines-DesigningAccessibleEnvironments,followingextensiveconsultationwiththeirmembersandexternalorganisations:www.iwa.ie/services/housing/iwa-housing-advocacy/designing-accessible-environments
TheNationalDisabilityAuthorityGuidanceonSafeEvacuationforAll:www.nda.ie/Website/NDA/CntMgmtNew.nsf/0/BC5E9F0E705C006C8025784F003B42EE/$File/Safe_Evacuation_for_All.pdf
CitizensInformationBoard,Access to Information for All: www.citizensinformationboard.ie/publications/social/social_access_info_contents.html
National Disability Authority guidance: www.accessibility.ie/MakeYourInformationMoreAccessible/
Information for all: European standards for making information easy to read and understand – Inclusion EuropeDo not write for us without us: Involving people with intellectual disabilities in the writing of texts that are easy to read and understand–InclusionEurope
Both the above available at: http://inclusion-europe.org/en/projects/pathways-ii
Further information Reference
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Making health information easier to understand and guidance for using plain English
Accessible information using symbols and pictures
Accessible information for blind people
Accessible information for Deaf or Hard of Hearing people
Forinformationonhowtowrite,prepareanddesigndocumentsinplainEnglish,see:www.simplyput.ie/
Make it Easy: a guide to preparing easy to read information hasbeenpreparedbytheAccessibleInformationWorkingGroupwhoworkwithadultswithintellectualdisabilitiesinIreland.Itisavailableat:www.walk.ie
TheNationalAdultLiteracyAssociationhasinformationonmakinghealthinformationeasiertofollow:www.citizensinformationboard.ie/publications/social/downloads/AccessToInformationForAll.pdf
EasyInfohasresourcestohelpmakeinformationaccessibleinformationforpeoplewithintellectualdisabilities,includingguidanceonhowtousesymbolsandpicturesandmakingdocumentsEasy-to-Read:www.easyinfoforus.org.uk/Organisationsthatprovidesymbolsinclude: • ChangePictureBank(www.changepeople.co.uk) • Photosymbols(www.photosymbols.co.uk) • Boardmakercommunicationsymbols (www.mayer-johnson.com)
ContacttheNationalCouncilfortheBlindofIreland’smediacentreforfurtherguidanceonhowtoprovidealternatives,includingBrailleandgoodqualityaudio,forpeoplewithimpairedvision:www.ncbi.ie.
TheIrishDeafSocietyhasfacilitiesforproducingsignedvideosandDVDs:www.irishdeafsociety.ie.
Further information Reference
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Accessible information where Englishisnotafirstlanguageand translation is required
Hospital care for people with dementia
www.lenus.ie/hse/bitstream/10147/207010/1/Lostintranslation.pdf
http://www.rcn.org.uk/development/practice/dementia/commitment_to_the_care_of_people_with_dementia_in_general_hospitals/commitment_to_dementia
Further information Reference
Information on entitlements
Name: Citizens Information Board Address: GroundFloor,George’sQuayHouse,43TownsendStreet,Dublin2 Website: www.citizensinformation.ie Telephone number: 0761079000 Fax number: 016059099 Service provided: TheCitizensInformationBoardprovidesinformationonpublic
services and entitlements in Ireland. Sign Language Interpreters
Name: Sign Language Interpreting Service Address: DeafVillageIreland,RatoathRoad,Cabra,Dublin7 Website: www.slis.ie Email: [email protected] Telephone number: 0761078440ormobile0879806996 Emergency out of hours: 0876725179 Fax number: 018380243 Service provided: TheSignLanguageInterpretationServiceisthenationalagency
fortheprovisionofsignlanguageinterpreters,andprovidescontactdetailsforanyonewishingtobookaninterpreter.Italsoorganisesalimitedremoteinterpretationserviceviavideolink.
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Ifyouwishtobookasignlanguageinterpreteroutsideofficehours,pleasecalltheSignLanguageInterpretingService(SLIS)EmergencyHelplineon0876725179.Onlyasmallnumberofpeoplecaninterpretmedicalinformation,buttheywilldotheirbesttoarrangeaninterpreterforyou.
Umbrella bodies - service providers
Name: Disability Federation of Ireland Address: FumballyCourt,FumballyLane,Dublin8 Website: www.disability-federation.ie Email: [email protected] Telephone number: 014547978 Fax number: 014547981 Service provided: Thisisthenationalsupportorganisationforvoluntarydisability organisationsinIrelandwhoprovideservicestopeoplewith
disabilities and disabling conditions. It serves as an umbrella bodyfororganisationsservingpeoplewithphysical,sensoryor
neurological conditions. Name: Inclusion Ireland Address: UnitC2,TheSteelworks,FoleyStreet,Dublin1 Website: www.inclusionireland.ie Email: [email protected] Telephone number: 018559891 Fax number: 018559904 Service provided: InclusionIrelandprovidesinformationandadvocacysupportto peoplewithanintellectualdisability,andparentsandfamily membersofchildrenwithanintellectualdisability.Themembership ofInclusionIrelandincludesindividualswithintellectualdisabilities,
parentsandcarersandserviceproviders.
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Name: National Federation of Voluntary Bodies Address: OranmoreBusinessPark,Oranmore,Galway Website: www.fedvol.ie Email: [email protected] Telephone number: 091792316 Fax number: 091792317 Service provided: Thisistheumbrellabodyforintellectualdisabilityserviceproviders. Name: NotforProfitBusinessAssociation Address: UnitG9,CalmountPark,Ballymount,Dublin12 Website: www.notforprofit.ie Email: [email protected] Telephone number: 014293600 Fax number: 014600919 Service provided: Thisistheumbrellabodyforserviceprovidersforpeoplewith physicalorsensorydisabilities.
Name: The Wheel Address: 48FleetStreet,(entranceParliamentRow),Dublin2 Website: www.wheel.ie Email: [email protected] Telephone number: 014548727 Fax number: 014548649 Service provided: TheWheelisasupportandrepresentativebodyconnecting communityandvoluntaryorganisationsandcharitiesacross Ireland.Establishedin1999,TheWheelhasevolvedtobecomea resourcecentreandforumforthecommunityandvoluntarysector.
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Accessibility checklist
Thefollowingtableisachecklistwhichstaffcanusetohelpthemidentifyifthereareanyspecificrequirementsrelatingtoaperson’sdisability.
Appendix 1
Aretherespecificrequirementsrelatingtotheperson’sdisability?Does the person need: Yes No
1. Tomakeappointmentsbytextmessageore-mail?2. Helptoknowwhenitistheirturntobecalled?3. Supportwithcommunicationorspecificcommunicationaids?4. Assistancewithmobility?5. Consultationstotakeplaceonthegroundfloor?6. Specificequipmentsuchasaliftinghoist,aheight-adjustableorexamination
couchoraccessibleweighingscales?7. Adapteddiagnosticequipment,suchasanMRIormammogram,adaptedto
accommodatetheirimpairment?8. Specificsupportorcareneedsrelatedtoapre-existingconditionorprimary
disability?9. Specialistnursingstaff,akeyworkerorsocialworkertoassistwithadisability?10. Arrangementsinplaceforafamilymember,carer,supportperson,personal
assistantorindependentadvocate?11. Specificassistancerequiredtogiveinformedconsenttocare?12. Accessibilityrequirementsinrelationtofollow-upappointments,referralstoother
servicesorservicesinthecommunity?13. Doesthepersonhaveanyotheraccessibilityrequirements?14. Doesthepersonneedaninterpreter?Ifso,whatlanguage?
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Appendix 2
Core principles of a quality services
The National Healthcare Charter, You and Your Health Service,isaStatementofCommitmentby theHSEdescribingwhatserviceuserscanexpectwhenusinghealthservicesinIreland,and
whattheycandotohelpIrishhealthservicestodelivermoreeffectiveandsafeservices.Itis basedoneightprincipleswhichunderpinhighquality,people-centredcare.Theseprincipleshave
beenidentifiedthroughareviewofnationalandinternationalpatientchartersandthroughwideconsultationwiththeIrishpublic.
TheNationalHealthcareCharteraimstoinformandempowerindividuals,familiesandcommunitiestoactivelylookaftertheirownhealthandtoinfluencethequalityofhealthcareinIreland.
You and Your Health Service - what does it do?
Itoutlinessupportingarrangementsforapartnershipofcarebetweeneveryoneinvolvedinhealthcare:patients/serviceusers,families,carersandhealthcareproviders.
Itsupportsahealthcareculturethatdelivershealthandsocialcareservicesinapredictable,preventative,personalandparticipatoryway.
Itrecognisesthattherearedifferentrolesandresponsibilitiesforbothserviceusersand healthcareproviders.
Itpromotestheimportanceofserviceusersasindividualswithdiverseneedsandnotjustamedicalcondition to be treated.
Itappliestoallpublichealthandsocialcareservices,includingcommunitycareservicesandacutehospitalservices.
ThefollowingtablesetsoutthecoreprinciplesofprovidingaqualityserviceassetoutintheNational Healthcare Charter, You and Your Health Service.
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Access
DignityandRespect
SafeandEffectiveServices
Communication and Information
Participation
Privacy
Improving Health
Accountability
Ourservicesareorganisedtoensureequityofaccesstopublichealth and social care services.
Wetreatpeoplewithdignity,respectandcompassion. Werespectdiversityofculture,beliefsandvaluesinline withclinicaldecision-making.
Weprovideserviceswithcompetence,skillandcareinasafeenvironment,deliveredbytrustedprofessionals.
Welistencarefullyandcommunicateopenlyandhonestly,andprovideclear,comprehensiveandunderstandablehealthinformation and advice.
Weinvolvepeopleandtheirfamiliesandcarersinshareddecisionmakingabouttheirhealthcare.Wetakeaccountofpeople’spreferencesandvalues.
Wewilldoourbesttoensurethatyouhaveadequatepersonalspaceandprivacywhenyouuseourhealthservices.Wemaintainstrictconfidentialityofpersonalinformation.
Ourservicespromotehealth,preventdisease,andsupport andempowerthosewithchronicconditionstoself-managetheir condition
Wewelcomeyourcomplaintsandfeedbackaboutcareandservices.Wewillinvestigateyourcomplaintsandworktoaddressyourconcerns.
8 Principles What patients and service users can expect
ExtractfromNational Healthcare Charter – You and Your Health Service.
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Disability - the numbers
TheCensusandtheNationalDisabilitySurveygiveanindicationofhowmanypeopleexperiencedifferentkindsofimpairment.Thiscanbeusefulforserviceplanning.
Therearedifferentdegreesofdisabilityfromtotalandseveretomoderateandmild,andthenumberofpeoplewithdisabilitiesisverysensitivetowherethelineisdrawn,whatexactquestionisaskedandhowitisasked.
BasedontheNationalDisabilitySurvey2006,betweenoneinfiveandoneintenofthepopulationhadalong-termdisability.InCensus2011,13%ofthepopulationstatedtheyhadalong-termdisability.Inaddition,therearepeoplewhomaybeexperiencingshort-termimpairment,becauseofabrokenlimb,forexample,andolderpeoplewhohavesomedifficultiesineverydayactivities,butdonotdescribethemselvesashavingadisability.
Sothedatapresentedinthissectionisindicativeandnotprecise.
Mobilityisthemostfrequentlyencountereddisability.Ofthe160,000peoplewhohaddifficultyinwalkinganydistance,83,000usedwalkingaidsand31,000werewheelchairusers.
Peoplewithalotofdifficultyinseeing(withglasses)greatlyexceededthenumberswho werecompletelyblind.Sothereislikelytobeawidespreaddemandforlargeprintbutfewer Braille users.
Thefiguresalsosuggestthathealthservicestaffarelikelytoencounterpeoplewhoarehardofhearingmorefrequentlythanthosewithoutanyhearing.Census2011showedtherewereabout2,600peopleforwhomIrishSignLanguagewasthelanguageofthehome.
Peoplewithdisabilitiesbytypeofimpairmentandseverity:NationalDisabilitySurvey2006
ThisisatablewhichisbasedonthosepeopleinterviewedintheNationalDisabilitySurvey2006whohaddisclosedadisabilitybothinCensus2006andintheNationalDisabilitySurvey.Itincludesthetypeofimpairmentandseverity.
Appendix 3
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Total % of population Seeing 50,600 1.19 -moderatedifficulty 27,600 0.65 -alotofdifficulty 20,700 0.49 -cannotsee 2,300 0.05
Hearing 57,600 1.36 -moderatedifficulty 35,200 0.83 -alotofdifficulty 20,600 0.49 -cannothear 1,800 0.04
Speech 35,300 0.83 -moderatedifficulty 16,800 0.40 -alotofdifficulty 12,200 0.29 -cannotspeak 6,400 0.15
Mobility and dexterity 184,000 4.34 -moderatedifficulty 57,000 1.34 -alotofdifficulty 62,200 1.47 -cannotdo 64,900 1.53
Moving around home 101,200 2.39 -moderatedifficulty 50,200 1.18 -alotofdifficulty 38,400 0.91 -cannotdo 12,700 0.30
Going outside of home 128,900 3.04 -moderatedifficulty 53,700 1.27 -alotofdifficulty 49,900 1.18 -cannotdo 25,300 0.60
Walking for about 15 minutes 160,000 3.77 -moderatedifficulty 47,200 1.11 -alotofdifficulty 52,900 1.25 -cannotdo 60,000 1.42
170 171
Total % of population Usinghandsandfingers 79,000 1.86 -moderatedifficulty 33,900 0.80 -alotofdifficulty 30,900 0.73 -cannotdo 14,300 0.34
Remembering&concentrating 113,000 2.67 -moderatedifficulty 54,900 1.29 -alotofdifficulty 43,800 1.03 -cannotdo 14,300 0.34
Rememberingimportantthings 77,600 1.83 -moderatedifficulty 39,100 0.92 -alotofdifficulty 27,600 0.65 -cannotdo 10,900 0.26
Forgetting where I put things 85,800 2.02 -moderatedifficulty 44,600 1.05 -alotofdifficulty 30,400 0.72 -cannotdo 10,800 0.25
Concentrating for 10 minutes 77,900 1.84 -moderatedifficulty 35,000 0.83 -alotofdifficulty 29,800 0.70 -cannotdo 13,100 0.31
Intellectual functions 27,700 0.65 -alittledifficulty 4,000 0.09 -moderatedifficulty 9,100 0.21 -alotofdifficulty 10,300 0.24 -cannotdo 4,300 0.10
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Total % of population Intellectual & learning 71,600 1.69 -alittledifficulty 12,000 0.28 -moderatedifficulty 25,900 0.61 -alotofdifficulty 24,800 0.58 -cannotdo 8,900 0.21
Interpersonal skills 22,300 0.53 -alittledifficulty 4,600 0.11 -moderatedifficulty 7,200 0.17 -alotofdifficulty 7,200 0.17 -cannotdo 3,400 0.08
Learning everyday skills 55,000 1.30 -alittledifficulty 10,200 0.24 -moderatedifficulty 19,500 0.46 -alotofdifficulty 18,700 0.44 -cannotdo 6,700 0.16
Diagnosed with intellectual disability 50,400 1.19 -alittledifficulty 14,000 0.33 -moderatedifficulty 24,200 0.57 -alotofdifficulty 9,000 0.21 -cannotdo 3,200 0.08
Emotional, psychological & mental health 110,600 2.61 -alittledifficulty 25,300 0.60 -moderatedifficulty 46,300 1.09 -alotofdifficulty 35,100 0.83 -cannotdo 8,900 0.21
172 173
Total % of population Pain 152,800 3.60 -moderatedifficulty 74,900 1.77 -alotofdifficulty 73,100 1.72 -cannotdo 4,700 0.11
Breathing 71,500 1.69 -moderatedifficulty 45,000 1.06 -alotofdifficulty 25,200 0.59 -cannotdo 1,300 0.03
Total persons with a disability 393,785 9.29
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Membership of the HSE Universal Access Steering Committee
TheHSEUniversalAccessSteeringCommitteewasestablishedin2011toadvise,makerecommendationsandsupportthedevelopmentofastrategicapproachtouniversalaccessinhealthandsocialcareservices.Itisapartnershipofkeyinternalandexternalstakeholdersandexperts.
Greg Price Director,NationalAdvocacyUnit,HSE Cate Hartigan AssistantNationalDirector,HSE(untilJuly2013) Paul Defreine ChiefArchitecturalAdviser,HSEEstates Diane Nurse NationalLeadforSocialInclusion,HSE Michael Shemeld NationalDisabilityUnit,HSE williamReddy AcuteHospitalsProgramme,HSE(untilJune2012) Tony Leahy MentalHealthSpecialist,HSE Enda Saul Communications,HSE RosalieSmithlynch AreaManager,ConsumerAffairs,HSE ChrisRudland AreaManager,ConsumerAffairs,HSE Helen Lahert CitizensInformationBoard Elaine Howley NotforProfitBusinessAssociation John Hannigan NationalFederationofVoluntaryBodies Deirdre Carroll InclusionIreland(untilJune2012) Jim Winters Inclusion Ireland Jacqueline Grogan DisabilityFederationofIreland Shane Hogan NationalDisabilityAuthority(untilJune2013) Donie O’Shea NationalDisabilityAuthority Dr. Shari McDaid MentalHealthReform Marie Prendergast PrimaryCare,HSE Michele Guerin EqualityOfficer,HSE Marian Murray EqualityOfficer,HSE Sinead Burns AreaManager,ConsumerAffairs,HSE Deborah Keyes AreaManager,ConsumerAffairs,HSE
Appendix 4
174 175
Gerry Mulligan PrimaryCareReimbursementServices,HSE Helen Valentine PrimaryCareReimbursementServices,HSE Phil Garland AssistantNationalDirector,ChildrenandFamilies,HSE(until
September2012) Caoimhe Gleeson NationalAdvocacyUnit,HSE Angela Kennedy NationalAdvocacyUnit,HSE Juanita Guidera NationalAdvocacyUnit,HSE
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ISBN: 978-1-906218-80-5
Quality and Patient Safety Division HealthServiceExecutive OakHouse MillenniumPark Naas CountyKildare Tel: 045880400 Fax: 1890200894 Email: [email protected] Website: www.hse.ie National Disability Authority 25ClydeRoad Dublin4
Tel: 016080400 Fax: 016609935 Email: [email protected] Website: www.nda.ie
National Guidelines onAccessible Health andSocial Care Services
people caring for people
A guidance document for staff on theprovision of accessible services for all
July
2014
| IS
BN
978
-1-9
0621
8-80
-5