Welcome to the Welcome to the Southern Trust Southern Trust

Stakeholder EventStakeholder Event

Lymphoedema Network Lymphoedema Network Northern Ireland (LNNI)Northern Ireland (LNNI)

• Launched February Launched February 2008 along side 2008 along side the CREST the CREST guidelinesguidelines

• Budget of £0.5 Budget of £0.5 million for regional million for regional service service developmentdevelopment

• info@lnni.orginfo@lnni.org

• Working together to develop Working together to develop lymphoedema services on a regional lymphoedema services on a regional basisbasis

• Accountable to DoHAccountable to DoH• Board meets 3 monthly to feedback on Board meets 3 monthly to feedback on

development, waiting lists etcdevelopment, waiting lists etc• Consists of clinical staff, trust Consists of clinical staff, trust

directors, DoH, patient representativesdirectors, DoH, patient representatives

The LNNI VisionThe LNNI Vision

• To change the emerging picture of the To change the emerging picture of the condition over the next 10 years, condition over the next 10 years, reducing incidence rates and the reducing incidence rates and the number of chronic presentationsnumber of chronic presentations

- Addressing access problems at either - Addressing access problems at either end of the condition pathwayend of the condition pathway

- - awareness/screening/immediate accessawareness/screening/immediate access

- complex conditions- complex conditions

- Supported by the new regional Service - Supported by the new regional Service Frameworks: cancer and cardio-vascularFrameworks: cancer and cardio-vascular

A Trust Lymphoedema Team

Clinical Lead

Specialist Practitioners

Admin Support

Clinical Assistants

• Vascular• Dermatology• Genetics• Palliative Care• Oncology• Tissue Viability• Community Nursing• Primary Care• Complementary

Therapy• AHPs • Clinical Psychology

Core Team

Lymphoedema Network

Service MappingService Mapping

Service Mapping Service Mapping

• All clinical areas who manage All clinical areas who manage patients with lymphoedema were patients with lymphoedema were surveyedsurveyed

• It consideredIt considered

*resources, such as rooms, *resources, such as rooms, equipment etcequipment etc

*training*training

*service provision*service provision

Locations offering Locations offering TreatmentTreatment

Availability of treatmentAvailability of treatment

Areas for improvementAreas for improvement

• Increase availability of garment Increase availability of garment measuring & garment varieties in measuring & garment varieties in services providing ‘at risk’ careservices providing ‘at risk’ care

• Guidance & leaflets to be distributed Guidance & leaflets to be distributed across all servicesacross all services

• Ensure treatment provided only by Ensure treatment provided only by specialist practitioners, e.g. limb specialist practitioners, e.g. limb volume measurement & MLDvolume measurement & MLD

Areas for improvementAreas for improvement

• Ensure all four cornerstones of treatment Ensure all four cornerstones of treatment made available in services providing made available in services providing treatmenttreatment

• Link with planning to ensure future Link with planning to ensure future facilities meet treatment requirements facilities meet treatment requirements

• Improve multi-professional links for Improve multi-professional links for onward referral optionsonward referral options

• Review computer and internet Review computer and internet accessibility & admin resources in light of accessibility & admin resources in light of LNNI datasetLNNI dataset

Progress to date Progress to date

• At risk leaflets for both cancer and At risk leaflets for both cancer and non cancer related lymphoedema non cancer related lymphoedema now available and being rolled out to now available and being rolled out to health care professionals with health care professionals with awareness educationawareness education

• Education to ensure that patients are Education to ensure that patients are identified quickly and referred to identified quickly and referred to lymphoedema services-thus 4 lymphoedema services-thus 4 cornerstones of care are availablecornerstones of care are available

Progress cont’dProgress cont’d

• New accommodation pending in New accommodation pending in Portadown and Banbridge Primary Portadown and Banbridge Primary Care CentresCare Centres

• All services have access to ITAll services have access to IT

Focus GroupsFocus Groups

Focus GroupsFocus Groups

• May 2009 2 focus groups were heldMay 2009 2 focus groups were held• They were asked to comment onThey were asked to comment on

1.1.Advice and informationAdvice and information

2.2.TreatmentTreatment

3.3.FacilitiesFacilities

4.4.Access to serviceAccess to service

5.5.Review processReview process

Key recommendationsKey recommendations

• Everyone who has surgery in around Everyone who has surgery in around the lymphnodes should be warned the lymphnodes should be warned about the possibility of lymphoedemaabout the possibility of lymphoedema

• Produce leaflets with details of Produce leaflets with details of community/voluntary organisations community/voluntary organisations and support groups in the area and support groups in the area

• review system to see if access to review system to see if access to appointments can be improved and appointments can be improved and more flexible for those who want itmore flexible for those who want it

• Interest in attending a local support Interest in attending a local support groupgroup

• Ensure repeat garments are provided Ensure repeat garments are provided in a timely fashionin a timely fashion

Process

• Independent facilitators were used so that there was no bias

• This exercise was repeated in each of the Trusts using the same questions

• A regional report was then collated

Patient Information Patient Information LeafletsLeaflets

Patient Feedback

• No consistent information• Many never received preventative

advice

LeafletsLeaflets

• Patients have been involved in the Patients have been involved in the development of leafletsdevelopment of leaflets

• ‘‘At Risk’ non cancer relatedAt Risk’ non cancer related• ‘‘At Risk’ Arm leafletAt Risk’ Arm leaflet• ‘‘At Risk’ leg leafletAt Risk’ leg leaflet

• The Northern Ireland Lymphoedema The Northern Ireland Lymphoedema Support Group have leaflets for those Support Group have leaflets for those who already have lymphoedema who already have lymphoedema

• Leaflets are being given to the key Leaflets are being given to the key health care professionals who meet health care professionals who meet the ‘at risk’ patientthe ‘at risk’ patient

• Also available from your Also available from your lymphoedema specialistlymphoedema specialist

Southern Trust Southern Trust Service Service

DevelopmentDevelopment

Service DevelopmentService Development

• Regional funding to employ clinical lead Regional funding to employ clinical lead and specialist staffand specialist staff

• Lead role is to support the clinical staff Lead role is to support the clinical staff with complex cases as well as carry with complex cases as well as carry own caseloadown caseload

• Provides education to health care Provides education to health care professionalsprofessionals

• Service development-to assess areas of Service development-to assess areas of greatest need and how to address with greatest need and how to address with existing resourcesexisting resources

Garment ProvisionGarment Provision

• There have been changes to how There have been changes to how many of you receive your garmentsmany of you receive your garments

• Urgent need for financial savings to Urgent need for financial savings to protect the services for patientsprotect the services for patients

• Many now available on prescription via Many now available on prescription via GPGP

• This may result in a change to your This may result in a change to your garment but will ensure you get it in a garment but will ensure you get it in a timely fashiontimely fashion

Lymphdat Lymphdat

Lymphdat Lymphdat

• How many lymphoedema patients are How many lymphoedema patients are there in NI?there in NI?

• We just don’t know!We just don’t know!• We have currently exceeded the We have currently exceeded the

predicted number for our populationpredicted number for our population• Lymphdat will be a database of Lymphdat will be a database of

lymphoedema patients-it will allow us lymphoedema patients-it will allow us to have a better idea of the size of the to have a better idea of the size of the problemproblem

Information on Information on LymphdatLymphdat

• Your permission will be requiredYour permission will be required• It will have restricted access to each It will have restricted access to each

clinical lead and one clerical support clinical lead and one clerical support workerworker

• It will be used to extract information It will be used to extract information on the prevalence of lymphoedema on the prevalence of lymphoedema

• It will contain info on: diagnosis, It will contain info on: diagnosis, assessment, treatment, outcomes, assessment, treatment, outcomes, reviews etc.reviews etc.

• Initially used to extract simple Initially used to extract simple information but eventually used as a information but eventually used as a research toolresearch tool

Patient and Public Patient and Public InvolvementInvolvement

PPIPPI

• There are increasing opportunities to There are increasing opportunities to involve patients and the public:involve patients and the public:

-Network meetings, -Network meetings,

-Working groups eg leaflet -Working groups eg leaflet developmentdevelopment

-Focus groups-Focus groups• Important voiceImportant voice• Please complete the questionnairePlease complete the questionnaire

Workshop!Workshop!

• Q1. How could your experience of Q1. How could your experience of the lymphoedema service be the lymphoedema service be improved?improved?

• Q2. What concerns you most about Q2. What concerns you most about having lymphoedema?having lymphoedema?

• Q3. Any else you want to tell us?Q3. Any else you want to tell us?