specification for the comissioning of peritoneal dialysis pathway
TRANSCRIPT
Kidney Care
Specification for theCommissioning ofPeritoneal Dialysis
Pathway
Better Kidney Care for All
We welcome this specification as the first comprehensive guide to best practice PeritonealDialysis (PD).
Written for commissioners and providers of renal services, this specification will no doubt proveto be a vital tool in broadening the delivery of high quality PD, driving forward serviceimprovement by offering greater choice and flexibility for patients across England includingoffering assisted PD as an alternative choice for kidney patients, particularly those who areelderly or frail whose only other options may be hospital haemodialysis or conservativemanagement.
We hope that this specification will be used by patients and commissioners as a guide to servicesthey should be able to access; by providers to offer patients genuine modality choice; and byprocurement departments to gain high quality, cost-effective services and supplies. If this workcan achieve equity of patient access, consistent pricing and a full range of product availability ina competitive market, it should lead to an increase in home therapy, with all patients offered areal choice.
Donal O’Donoghue Beverley MatthewsNational Clinical Director for Kidney Care Programme DirectorDepartment of Health NHS Kidney Care
Foreword
3
This specification is written for commissioners and providers of Renal Services. For commissioners, it provides a comprehensive guide to best practice Peritoneal Dialysis (PD)with outcome measures applicable at each stage. It aims to encourage benchmarking,encourage commissioners to look at and challenge variability in service provision and ensure anappropriate number of patients on home dialysis therapies. For renal units, it offers a patient-centred approach to PD provision. Outcome measures will assist in driving forward serviceimprovements where necessary and the tender framework will inform procurement contracts.
BackgroundThe strong presence of Peritoneal Dialysis (PD) in the UK has fallen in the last decade, (first modality PD reduced from 40% to 21%1). There is wide variation around the country bothin the number of patients on PD and the types of PD available. While it has been shown that50% of patients given free choice will choose PD2, the percentage on PD at ninety days rangesfrom 0 to 60%1. At the same time, a population that is increasingly elderly and frail may berestricted to a choice between hospital haemodialysis (HD) and conservative care when assistedPD, (a standard therapy in several countries3,4 but currently in it’s infancy in the UK) might bemore appropriate.
AimsThis document aims to achieve equity in patient access to all PD treatment modalities; to setstandards for quality of care and outcomes; to maintain availability of the full range of PDproducts and services with competitive providers in PD market; and to achieve nationalconsistency in pricing across England.
Opportunities to comments were given to key stakeholders including Renal Association (RA),National Kidney Federation, British Renal Society, The Campaign for Greener Healthcare and theRenal Information Exchange Group. See Appendix 3.
SummaryThe Specification is based on a patient-centred pathway (Appendix 1) following the patientjourney from advanced Chronic Kidney Disease into dialysis. There are five sections, each withmeasurable outcomes. There is allowance for entry to the pathway from all routes. The expectedroute is from a renal low clearance clinic but all patients, including unplanned presentations,should be able to access this pathway.
Preparation is seen to be the key phase to informed patient choice and access to PD. The NSFrecommends a year of pre-dialysis preparation. The content is not currently defined but shouldinclude unbiased adequate education with further work suggested to write a patient curriculum.
The initiation phase commences once dialysis is imminent. This includes decision affirmation,timely planning of access surgery and support planning for assisted PD. Assisted PD is a relativelynew modality to UK, not yet included in the renal tariff (see Appendix 5). Catheter insertionguidelines follow the recent RA guideline, with particular emphasis on a patient-centred service.
Patient training needs to be flexible to accommodate all patient needs, against recommendedstandards (Appendix 4).
Maintenance treatment requires ongoing clinical support by staff with sufficient PD expertise.
Executive Summary
4
Patient support by patients, IT links, customer friendly equipment delivery and DAFB are allimportant features. Advance directives and clear plans for patients discontinuing PD are anintegral part of maintenance treatment.
The specification adds in detail to the pathway. Each phase has measurable quality outcomes forcommissioners to benchmark and providers to drive service forward. The service specificationalso forms the basis of a national tender framework. This will offer the individual components ofthe service (PD catheters, PD fluid, PD machines, PD Ancillaries, Home Delivery, Hospital Delivery,DAFB Dialysis) to encourage transparency and the inclusion of smaller providers. The procurement hubs fully support this initiative and the expectation is that individual trustsand consortia will contract against the national framework structure and prices to maintainconsistency across the country. National specifications to be used for regional procurement areincluded (at Appendix 4 and 5) for Provision of Patient Training Services for Peritoneal Dialysisand Provision of Assisted Peritoneal Dialysis. Future tenders may be developed for PeritonealDialysis Catheter Insertion and the Provision of Pre-Dialysis Preparation and EducationProgrammes.
We hope that this specification will be used by patients and commissioners as a guide to servicesthey should be able to access; by providers to offer patients genuine modality choice; byprocurement departments to gain high quality, cost-effective services and supplies. Therecommended outcome measures should enable the specification to satisfy the terms ofreference of the group. If this work can achieve equity of patient access, consistent pricing and afull range of product availability in a competitive market, there should be an increase in hometherapy with all patients offered a real choice, including assisted PD as an established modality.
5
Standard Specification for the Commissioning of Peritoneal DialysisThis specification forms part of the Standard NHS Contract for Acute Services and should beconsidered by commissioners in conjunction with standards set out in The National ServiceFramework for Renal Services: Part One Dialysis and Transplantation.
This specification sets what is required of a clinically safe and effective organisation that isproviding care for children, young people and adults requiring peritoneal dialysis. It describes theinterventions and actions required along the patient pathway as well as entry and exit points.
This template service specification has been developed in partnership between commissionersand provider agencies, and is based upon evidence-based care and treatment models. It shouldbe open to scrutiny and available to all service users/carers as a statement of standards that theycan expect to receive.
Description of Peritoneal DialysisPeritoneal dialysis (PD) is a well established treatment modality for end stage renal disease,providing both patients and clinicians with additional choice and flexibility, (50% of patientsgiven informed choice will opt for this modality).
Peritoneal Dialysis should be delivered in the context of a comprehensive and integrated servicefor renal replacement therapies, including haemodialysis (with temporary backup facilities),transplantation and conservative care. Continuous ambulatory peritoneal dialysis (CAPD),automated peritoneal dialysis (APD) and assisted PD, in all its forms, should be available.
Referral to a multi-skilled renal team should, where possible, be made at least one year beforethe anticipated start of dialysis treatment, for appropriate clinical and psychological support.7
Early referral for assessment and investigation for access surgery is crucial. Current best practicefor children, young people and adults is four weeks before peritoneal dialysis.
Children and Young PeopleChildren and young people with Established kidney failure are subject to all the usual pressuresof childhood and growing up as well as the challenge of living with renal disease. Meeting theirneeds is key to delivering high quality services. Children need to be cared for in designatedpaediatric renal centres by appropriately trained staff. Moving from paediatric to adult units is akey element of their care that must be efficient. Transition policies are crucial if this segment oftheir care is to be managed appropriately.
6
IntroductionThis specification has been developed by a national representative group of clinical expertsand professionals and comprises six key sections:
Section One: Overview and aims of the service Section Two: Service elements Section Three: Service deliverySection Four: Quality and governance Section Five: Quality Indicators and Measurable outcomesSection Six: Review
Details of the group membership and individuals invited to comment in the development ofthis specification are shown at appendix 2 and 3.
Section Heading Page
1. Service Overview 91.1 Aim1.2 Strategic1.3 Commissioning1.4 Communication1.5 Patient Centred Care
2. Service Elements 102.1 Entry to the Pathway2.12 Preparation 2.13 Structure2.14 People 2.15 Technology2.16 Process2.17 Culture2.18 Goals
2.2 Initiation of Treatment 122.21 Confirmation of modality decision2.22 Preparation 2.23 Structure2.24 People 2.25 Technology2.26 Process2.27 Culture2.28 Goals
2.3 Catheter Insertion 132.31 Preparation 2.32 Structure2.33 People 2.34 Technology2.35 Process2.36 Culture2.37 Goals
2.4 Patient Training 14
2.41 Preparation
2.42 Structure2.43 People 2.44 Technology2.45 Process2.46 Culture2.47 Goals
Contents
7
2.5 Maintenance 152.51 Preparation 2.52 Structure2.53 People 2.54 Technology2.55 Process2.56 Culture2.57 Goals
3. Service Delivery 173.1 Geographical Coverage/Boundaries3.2 Hours of Operation3.3 Patient Pathway
4. Quality and Governance 18
5. Quality Indicators and Measurable Outcomes 19
6. Review 20
7. Appendices 21Appendix 1 Peritoneal Dialysis Patient Pathway Appendix 2 Group membershipAppendix 3 Opportunities for commentAppendix 4 Specification for provision of PD patient trainingAppendix 5 Specification for provision of assisted PDAppendix 6 Source documents
8
1.1 Service Aims A patient pathway derived specification for Peritoneal Dialysis to be used nationally as aframework basis for contract tendering.
1.2 Strategic o To maintain number of competitive providers in PD marketo To maintain availability of the full range of PD products and serviceso To achieve national consistency in pricing across Englando To achieve equity in patient access to all treatment modalitieso To set standards for quality of care and outcomes
1.3 Commissioningo To ensure that a full range of dialysis modalities is available from appropriate providers
and is offered freely to patientso To inform development of Kidney Dialysis Tariff
1.4 Communicationo To ensure effective communication with key stakeholderso To report appropriately to Kidney Care Programme Boardo To develop Communication Strategy to share outcomes
1.5 Patient-Centred Careo Ensure views of all stakeholders, including patients and carers, are considered
1. Service Overview
9
2.1 Entry to the pathwayPatients will approach peritoneal dialysis (PD) by various routes. Adequate preparation andeducation is essential in each scenario.
o Planned from Renal ClinicThe preferred route, with an expectation that it includes the majority of patients. From therenal clinic, patients to transfer to a low clearance/pre-dialysis service on agreed, locallydeveloped, IT supported protocols reflecting renal function and predicted time to dialysis
o Planned from other parts of the renal unitPatients choosing to change modality or failing on haemodialysis (HD) or transplant to havethe opportunity of, and access to, the PD pathway at the preparation phase
o From other hospital departments (including A&E)Locally derived guidelines (for example, via abnormality flags on pathology results) shouldencourage timely referral into the renal service
o From primary careExisting mechanisms of Chronic Kidney Disease (CKD) guideline5 and Quality OutcomeFramework (QOF)6 targets to identify patients sufficiently early to enter the renal clinic butany patients with more advanced CKD could enter at the preparation phase
o Unplanned presentationPatients presenting late and requiring acute dialysis to be offered an accelerated routethrough the pathway to ensure adequate preparation and freedom of modality choice.This should include the option of an acutely inserted PD catheter. There should be theopportunity to revisit this education and choice at a later date
o All renal units to have ongoing analysis of their patient flow onto dialysis.
2.12 PreparationThis stage should meet the NSF target7 of education more than one year pre-dialysis and ensureunbiased access to all treatment modalities.
2.13 Structureo Dialysis preparation provided within an integrated specialised renal serviceo A specialised low clearance service (probably a dedicated clinic) to offer a full range of
balanced renal educationo Infrastructure able to offer all PD modalities (CAPD, APD, assisted CAPD and assisted
APD)o An accelerated pathway option to accommodate non-planned starterso Capacity for home visits and review of home circumstanceso Locally developed protocols supported by IT should be developed to allow a protocolised
trigger to refer patients from renal clinicso Ability to offer peer-support by a patient buddy system
2. Service Elements
10
2.14 Peopleo CKD educators to be trained to give information. To be impartial, knowledgeable, and
cover all treatment options (HD, PD, Transplant & Conservative Care), in all settings(Home, Satellite, Centre)
o Number of educators to be proportional to the incident renal replacement therapy (RRT)population
o Educators are likely to be nurses and will be part of a multi-disciplinary team (MDT). This will include nurse, psychologist, interpreter, dietician, social worker, doctor and peer-support
o Training to be offered to patient, family, paid and unpaid carerso Primary care to be involved in the planning process
2.15 Technologyo Robust IT support to trigger referral, progress through process and provide subsequent
audit trail. Ideally able to connect between NHS serviceso IT literature, websites and decision aids to reach a minimum standard for contento Printed literature to minimise duplication and use environmentally preferred materials
and processes
2.16 Processo PD education and preparation to be appropriately timed, perhaps using decision making
milestones compatible with RA and NSF guidelineso Education to be delivered according to best practice. This to include at least one
dedicated 1:1 session, with further group or single sessions sufficient for the patient tomake an informed modality choice in a timely manner
o Patient to have a named nurse/contact for querieso Once modality is chosen, opportunity to revisit education at regular intervals or have
further education if necessaryo If chosen modality is assisted PD, support services to be involved at this pointo PD teams should be involved in shared patient care during preparation and confirmation
(ideally with MDT meetings)o A clear transfer of formal responsibility of care to the PD team should be made at the
point of catheter insertion
2.17 Cultureo Empowered holistic view of CKD (including patients’ social and environmental context)o Increased exposure to PD in Specialist Registrar curriculum9
o Removal of bias in patient groups (e.g. age, disability and ethnicity) by educationo Create culture of environmental sustainability in kidney care – awareness raising in staff
and patients
2.18 Goalso Patients enabled to make an informed choiceo The service provided to be seamless
11
2.2 Initiation of TreatmentConfirmation of modality decisionA key step between pre-dialysis preparation and catheter insertion, to allow timely insertion of PDcatheter 7,10.
2.21 Structureo Integrated PD service provided in a dedicated area, including education area, training
area, treatment room, consultation room. To be of a size adequate to the PD populationo PD facilities to be available in satellite dialysis unitso To have close links with the pre-dialysis and maintenance teams (if different), both
geographically and by formal handover o All patient needs to be accommodated including physical disability, learning disability,
cultural needs, language needs (interpreters and written information), limited literacy,cognitive impairment
o To be provided both on the hospital site and in the patient’s home
2.22 Peopleo Identify family members or carers who will need to be involved in trainingo Primary care services to continue to be involved in treatment plans o Trained PD nurses to be provided at recommended 1 to 20 patients11 Sufficient health
care assistants to be available to provide assisted APDo Patient to be seen again by dietician, social worker and psychologist as necessary
(timings to minimise patient travel to separate appointments)o A designated consultant to be assigned to the patient o The unit to have a senior clinical PD championo Staff undertaking home visits to be able to recognise and action health and safety risks
(including referral for housing interventions, fuel poverty or heatwave vulnerability)
2.23 Technologyo Use of IT audit tools and information systems
2.24 Processo Formal handover from pre-dialysis teamo Suitably trained PD nurse to assess patient and family (ideally at home)o Decision made on most suitable type of PDo Empower extended care facilities if necessaryo Sign off suitability for treatment modality, patient expectation of treatment and
agreement between patient and staff
2.25 Cultureo Increase awareness of PD in doctors and other renal patient groups
2.26 Goalo Appropriate patients start PD as their treatment of choice
12
2.3 Catheter Insertion2.31 Structure
o Catheter insertion to be available in appropriate settings including operating theatre,radiology departments and clean areas on renal wards
o To be sufficient flexibility in the provision to allow a routine catheter insertion to beperformed within two weeks and for an urgent catheter insertion within 24 hours
o Availability of both day case and in-patient procedureso Patients to have choice of procedure date within the 18 week pathwayo Pre-dialysis clinics to have systems ensuring that patients are offered catheters at
appropriate level of renal function7 avoiding emergency catheter placement ortemporary haemodialysis
2.32 Peopleo Staff appropriately trained in PD catheter insertion10 could include surgeons,
radiologists and renal clinicians, both medical and nursingo Renal MDT continue to be involved
2.33 Technologyo Full range of PD catheters to be available according to clinical need. (Where
environmentally preferable products available, services to justify the purchasing ofalternative products. Product evaluation criteria to be developed)
o General and local anaesthetic at patient’s choice if clinically appropriate
2.34 Processo Scheduling of procedure, type of anaesthetic and day case/in-patient at choice of
patiento Pre-procedure preparation according to local guidelineso Catheter insertion to follow current best practice guidelines10
o Post-op care according to local guidelineo Planned follow-up until catheter is used, including bowel care
2.35 Cultureo Patient-centred serviceo Environmentally sustainable care
2.36 Goalo A working catheter placed in a timely, flexible fashion
13
2.4 Patient TrainingThis must be done at an appropriate time for the patient’s CKD and healing of catheter insertion site
2.41 Structureo Dedicated competent PD training team and location, in proximity to pre-dialysis and PD
maintenance teamso Training to be available flexibly both in place (hospital, satellite, home) and time, including
weekends and evenings if necessaryo Training to be tailored to all patient needs, including physical disability, learning disability,
cultural needs, language needs (interpreters and written information), limited literacy,cognitive impairment
o Home delivery of required supplies and waste collection will be set up at this time. Thisshould be patient centred in terms of delivery times and frequency. Rapid installation andemergency deliveries should be available. Patients should have the security of knowndelivery staff and safe key storage if necessary. Stock should be delivered to the point ofuse and rotated by date
2.42 Peopleo Patient and family or carers if necessary for assisted APDo Renal MDT including named nurse and consultanto Primary care team
2.43 Technologyo Full range of catheters and connectology o Full range of dialysis fluids in all bag sizes, strengths and special fluids (including icodextrin,
amino acids and biocompatible fluids)o Full range of cycling machineso A minimum standard of ancillaries to be agreed, with optional provision of others
(to include bag scales, bag warmer, bathroom scales, Blood Pressure (BP) machine,cleaning solutions, dressings, paper towels, dressing packs)
o Information provided by suppliers to allow sustainability scoring of products, packaging,distribution and waste management. Preferential purchasing of high-scoring products andservices, except where clinical needs determine otherwise
o Inclusion of future innovations as they arise
2.44 Processo Check that catheter is patento Flexible training to suit patient for location and timingo Competency based training tailored to patient needso Identify named nurse and consultanto Develop individual care plano Offer buddy supporto Formal sign off by trainer and patient of adequate training and effective dialysiso Follow up home visito First Peritoneal Equilibration Test, clearance and clinic appointment according to RA
guidelines12
2.45 Cultureo Training tailored to full range of patient needs
2.46 Goalo Patient with competency-based knowledge; adequately dialysed and independent at
home14
2.5 Maintenance2.51 Structure
o A dedicated PD area containing beds and chairs. To include waiting and clinical areasfor education/training, treatment and consultation; storage space for equipment andnotes; space for MDT; facility to nurse acutely ill patients
o PD and clinic facilities available in the main centre and sites close to patient homes(e.g. Satellite Haemodialysis Units). Satellite HD units should have facility for PD nursesand/or doctors-drop in, line changes etc, training clinic
o Accessible to wheelchair/Ambulance service and acute serviceso To have close links with the pre-dialysis and training team (if different), both
geographically and by formal handover o All patient needs to be accommodated including physical disability, learning disability,
cultural needs, language needs (interpreters and written information), limited literacy,cognitive impairment
o Flexible patients-centred home delivery system, as set up during trainingo Availability of specific young people’s support groupo Dialysis away from home to include delivery to the patient’s holiday destination (free
to the patient) in an unrestricted allocation. Allocation will vary widely on a patient topatient basis. Those patients in need of allocation for business, education, familyemergency, bereavement etc should be able to negotiate what they require7,13,14.
Costings, which are agreed between renal unit and supplier, to be transparent
2.52 Peopleo PD to have a senior dedicated medical or nursing championo Trained PD nurses at current recommended ratio of 1:2011
o Nurses in other renal areas to be trained in the basics of PD (particularly in-patientareas but also HD and Transplant)
o Dieticians, social workers, psychologists to have PD knowledge and be available at therecommended numbers11
o Doctors in training to have sufficient exposure to PD to develop appropriatecompetencies9. This to include home visits, clinics, access insertion and collaborationwith the PD nursing team
o Community support engaged - including family, carers and outside agencies wherenecessary
o Primary care team to be involvedo Interpreters to be available to gain access to ethnic groupso Access to learning disabilities teams to be available where necessaryo MDT to have knowledge of sustainability issues and the health gains possible from
physical activity, social connectivity, healthy housing and access to natural spaces
2.53 Technologyo Full range of catheters and connectology o Full range of dialysis fluids in all bag sizes, strengths and special fluids (including
icodextrin, amino acids and biocompatible fluids)o Full range of cycling machineso A minimum standard of ancillaries to be agreed, with optional provision of others (to
include bag scales, bag warmer, bathroom scales, BP machine, cleaning solutions,dressings, paper towels, dressing packs)
o Information provided by suppliers to allow sustainability scoring of products,packaging, delivery and waste management. Preferential purchasing of high-scoringproducts and services, except where clinical needs determine otherwise
o Inclusion of future innovations as they arise
15
o Information Technology■ Access to National Renal Dataset across UK (e.g. by development of Renal
Patient View).■ Monitoring PD adequacy■ Patient chat rooms, blogs■ Links into hospital systems
- Ordering pharmacy supplies- Procurement/Finance for authorisation and billing - Ordering additional services (e.g. transport)
o Innovations (e.g. Telemetry or Remote PT/ carer reporting) o Information in different languageso Equipment for learning disabilities/Cognitive problems/Hearing loops
2.54 Processo To be clearly linked into training, possibly with a formal sign-offo Each patient to have a named carer or team o Each patient to have an individual care plan – shared and available to all areas
including ward staffo Outpatient care and monitoring to meet the RA guidelines9
o Home delivery establishedo Clinics to be available in centre and closer to home, with flexible times to suit working
patients and access to full MDTo PD expertise to be available on all hospital sites, with community visits as necessary o PD to be available in extended care facilities (e.g. Rehabilitation centres, nursing
homes, hospices)o Assisted PD (CAPD or APD) to be readily available to a patient choosing PD whose
inability to perform the technique would otherwise require hospital haemodialysis.This to include access to paid carers who are supported and regularly trained. Closeliaison with local health agencies, hospices, primary care, social workers will berequired. Regular review as required level of assistance may change
o Advance care planning to include recognition of changes in the patient and thesuitability of PD as a modality. This will include increased social support; access tospecialist surgery for EPS (Manchester and Cambridge); planned transfer to assistedAPD or HD; planned end of life care if necessary
2.55 Cultureo Patient advocacyo Professional respect for clinical decisionso Accessible care for all patient demographics
2.56 Goalo PD accessible and available without discrimination
16
3.1 Populations and Geographical Boundaries o Dialysis services are commissioned at a specialised commissioning level and would
generally serve populations greater than 500,000o The geographical areas covered by the service will be available, i.e.
PCT catchment populations should be definedo Efficient patient transport arrangements need to be established.
Particular consideration should be given to meeting the transport needs of childrenand young people, who may have to travel long distances to received specialist care
3.2 Hours of OperationAdequate 24/7 arrangements should be in place with a standard service being available from9am – 5pm Monday to Friday, and out of hours care available from appropriately trained clinicalstaff.
3.3 Patient Pathway The PD patient pathway is shown at appendix 1.
3. Service Delivery
17
Service providers will be required to deliver significant efficiency savings whilst retaining highquality care for all. These Quality Initiatives and Productivity and Performance (QIPP)requirements should be agreed between commissioner and provider on an annual basis.
The commissioner should use the National Renal Dataset to support the inclusion of aspects ofkidney care in the Commissioning for Quality and Innovation (CQUINs) payment system foracute trusts and kidney care being considered as part of the quality accounts.
In order to ensure that users receive a high quality service there is a need to develop Nationalcore competencies for renal staff. Many renal units throughout the UK have completed, or are inthe process of completing, nurse competencies and there is a need to standardise and sharegood work. Practitioners who practice in renal units or other settings need to ensure theyoptimise the care they provide for patients receiving peritoneal dialysis treatment. A minimumcompetence framework is designed to enable the practitioners to enhance knowledgeunderpinning practice, to gain confidence by perfecting practice and to optimise care for thepatient receiving peritoneal dialysis.
o Staff will be competently trained. Examples of EDTNA-endorsed competencies for renalspecialists can be accessed at www.kidneycare.nhs.uk.
o The Group Manager for Peritoneal Dialysis will be notified immediately of anyincidents relating to the PD service and action taken as appropriate to the nature ofthe incident
o Complaints specifically in relation to the Peritoneal Dialysis service will be forwardedto the Group Manager for Renal Services and will be formally acknowledged withinfive working days. The provider will endeavour to deal with the complaint promptly toresolve the immediate problem and document an action plan in order prevent anyrecurrence
4. Quality and ClinicalGovernance issues
18
5. Quality Indicators andMeasured Outcomes
19
Area National/localguidance
Quality Indicator Measurable Output
Preparation Renal NSF
RenalAssociationclinicalguidelines
• Meet NSF clinical guideline • Patient satisfaction survey8
• Ensure informed patient choice
• Percent starting dialysis withplanned access
• Percent choosing PD• Percent choosing conservative
kidney management• All units to have education
protocols in place• Percent educated 1 year pre-
dialysis
Initiation oftreatment
Renal NSF
RenalAssociationclinicalguidelines
• Percent changing decision frominitial preparation
• Percent starting with permanentaccess
• All children should be treated ina designated nephrology anddialysis centre
• Percentageof changed decisions (c)
• Percent starting withpermanent access
• All children should haveaccess to renal trainedpaediatric nurses
CatheterInsertion
RenalAssociation/International Societyfor PD clinicalguidelines
• Meet RA clinical guideline10
• Patient satisfaction survey8
• Cancellation rate (18 wk pathway)
• Percent with functioningcatheter at 6 weeks
• Exit site infection rate• Number of good or excellent
patient satisfaction reports• Number of cancelled
procedures
PatientTraining
RenalAssociationclinicalguidelines
• Timely first time treatment7
• Adequate training sign-off by6 week8
• Peritonitis free by 6 weeks
• 80% of planned PDpatients start on PD
• Number with training sign-off at 6 weeks
• Number peritonitis free at 6weeks
• Number on assisted PD
Maintenance Renal NSF
RenalAssociationClinicalGuidelines
BRS WorkforcePlanning Report
• Dedicated PD nursing staff (1 W.T.E. per 20 patients) shouldbe part of the multidisciplinaryteam11
• PD patient demographics(equivalent to whole renalpopulation)
• PD technique failure rate (by cause)
• Facility to provide assisted PD• Advance care plan in place• Meet Renal Association clinical
guidelines for PD
• Patient to peritoneal dialysisnursing staff ratio
• Demographic data provided• Number failing PD• Percent on assisted PD• Percent with advance care
plan • Measure renal association
quoted standards
• The Service needs to identify a method of agreeing measurements for continued improvementof the service
• A method and process must be recognised to identify unmet need and bring it to theattention of commissioners
• A review date will be identified
• The review must include details of specifications needed for continuing fitness for purpose andthe provider’s delivery against this specification
• The process for the review will be detailed
• Identification of how compliance against the specification will be monitored in year will beclearly stated
6. Review
20
Preparation
Confirmation
MeasuredOutcome
Goals
Culture
Process
Technology
People
Structure
Primary careIdentified by CKD
guideline 1,2
Late presentAccelerated/pa
pathway
LA
Hospital / A&ELocal guidelines for timely RRT referral
HLoti
Renal UnitPatient choice or Failing Tx & HD
Patient questionnaire on timing & content 4
Percent educated 1 year pre-dialysis 3
Percent starting with planned access 3
Percent choosing PD (all types) 5
Number choosing conservative care
Patients enabled to make an informed choice
The service provided should be seamless
Empowered holistic view of CKD
Increased exposure to PD in SpR curriculum
Removal of bias in patient groups by education
Best practice education delivery, timing and frequency (at least one 1:1 dedicated session)
Adopt a formal patient education curriculum
Education preferably available at home
Revisit at regular intervals, with set milestones
Utilise patient care plan
Final modality decision to be by MDT
Consider use of IT decision making aidsIT pathways and Renal Patient View
Training offered to patient, family & carers
All staff specifically trained to give dialysis information
HD & Transplant nurses to be educated in PD
A PD champion
Integrated specialist renal services
Infrastructure offering all PD modalities (CAPD,APD assisted PD & assisted APD)
Buddy system via patient forum
Dedicated PD service witlinks to pre-dialysis
Meet all needs (ethnicitylanguage, age, disability
Patient, family & carers i
GP/district nurse must be
Dedicated renal MDT (Ndoctors, dieticians, sociapsychologists )
Home visit at this stage
Involve extended care fanecessary
Assisted PD available if pcarer unable to perform
Sign off suitability, patieexpectation & agreemen
Increase awareness of PDdoctors & other renal pagroups
Appropriate patients statheir chosen treatment
Percent changing decisioinitial preparation
Percent starting with peaccess 3
Renal ClinicProgression
by GFR
References1. NICE CKD guideline 2. QOF3. Renal NSF4. PROMS 5. Renal Association PD working party6. RA guideline catheter insertion8. RA guideline PD
Appendix 1
Service Specification for the Provision of a
Maintenance
tersarallel
End of Life Care
HDTransplant
PD Patient Pathway
Initiation
Insertion Training
th clear
y, y, literacy)
included
e involved
urses, l workers,
acilities as
patient or PD
ent nt
D in atient
art PD as
on from
rmanent
Flexible theatre & X-ray facility
MDT + dedicated Surgeon &/or Radiology
Encourage renal trainees to insert PD catheters
Insertion to follow RA guideline 6
Patient to have choice of GA/LA
Full range catheter/PD systems
Timing to suit the patient & RA guideline 6
GA/LA as patient choice
Availability of day case booking-flexible & patient orientated
Patient-centred service
A working catheter placed in a timely, flexible fashion
RA insertion audit measure 6
Patient satisfaction survey 4
Cancellation rate (18 wks)
Timely first time treatment 3
Number on assisted PDAdequate training sign off by 6 weeks 4
Peritonitis free at 6 weeks 8
Patient with competency based knowledge; adequately dialysed & independent at home
Training tailored to full range of patient needs
Location & timing to suit the patient &carers
Named contact person
Support staff +/- patient buddy
Include first PET, clearance & clinic
Sign-off completed training
Follow-up home visit
Full range of PD systems, fluid, connectology, ancillaries, & training equipment. To meet sustainability targets & include future innovations
Patient, family, carers (assisted)
Renal MDT and primary care
Dedicated PD training team
Meet full range of patient needs
Training at home or in the unit
Set up patient-centred supply delivery contract
Dedicated multi-purpose PD space
Flexible supply delivery infrastructure
Holiday dialysis meeting national guideline 9
Young peoples group
Facility for assisted PD at home/care facility
Trained PD nurses of right skill mix in all sitesWard staff to have adequate PD knowledgeEngaged community support & primary care
Full range of technology, fluid & ancillaries
IT-dialysis prescription & patient chat rooms
Clear link to training
Named carer or team
Individual patient plan available to all including ward staff
Continue peer support /buddy system
Update education, support & concordance Follow RA clinical guidelines
Long term treatment strategy, including modality switch, assisted PD, EPS surgery & withdrawal of dialysis/ palliative care
Patient advocacyProfessional respect for clinical decisionsAccessible care for all patient demographics
PD accessible & available without discrimination
Number on assisted PD against agreed criteriaPatients lost to PD each yearPD patient demographics ( equivalent to whole renal population)Percent with advanced care plan
80% of planned PD patients start on PDPatient to peritoneal dialysis nursing staff ratioMeasure renal association quoted standards
Peritoneal Dialysis Service Appendices
25
Appendix 2
Group Membership
Julie Asbury Optima Healthcare Consulting
Lindsey Barker (Chair) Consultant Nephrologist, Royal Berkshire NHS Foundation Trust
Edwina Brown Renal Association, Consultant Nephrologist, Imperial CollegeHealthcare NHS Trust
Holly Cocker Kidney Patients Association, patient representative
Liz Cropper CKD Nurse Consultant, University Hospital of NorthStaffordshire NHS Trust
Simon Davies Renal Association, Consultant Nephrologist, University Hospital of North Staffordshire NHS Trust/Keele University
Debra Day Procurement Manager, Barts and The London NHS Trust
Richard Dodds NHS Standard Contract Lead, Department of Health
Barbara Dollery PD Sister, Royal Berkshire NHS Foundation Trust
Christine Emerton Optima Healthcare Consulting
Liam Horkan Procurement, East of England
Caroline Judge British Renal Society, Matron Renal Out patients Services. EastKent Foundation Trust
Bev Matthews Programme Director, NHS Kidney Care
Andrew Mooney Consultant Nephrologist, Leeds NHS Acute Trust
Anne Morris General Manager Renal and Transplant Directorate, North Bristol NHS Trust
Sanjeev Narwal Category Lead Pharmacy & RenalCompany: Healthcare Purchasing Consortium
Angela Newman Lead Renal Commissioner, Pan London SCG
Donal O'Donoghue National Clinical Director for Kidney Care, Department of Health
Rob Pearce NHS Supply Chain
Angela Ridge Senior Sister Peritoneal Dialysis, Dorset County Hospital NHS Foundation Trust
Mario Varela Procurement, Barts and The London NHS Trust
Bernadette Weaver Procurement, East of England
Appendix 3
Opportunities for comment
Organisation Title
British Association of Paediatric Nephrologists President
British Renal Society President
Clinical Directors Forum Chair
Joint Speciality Committee Chair
Kidney Alliance Chair
Kidney Care Network Managers All
NE
NW
NW
NW
Y&H
WM
EM
EoE
SC
L
SW
SEC
Kidney Research UK CEO
National Kidney Federation CEO
NHS Blood & Transplant KAG
Paediatric Audit & Registry Committee Chair
Renal Association President
Senior Nurses - Renal Units Via
Specialised Commissioners for Kidney Services All
NE
NW
Y&H
WM
EM
EoE
SC
L
SW
SWSHA
SEC
UK Renal Registry Chair
SHA Darzi Leads
National Clinical Directors
Baxter Healthcare
Fresenius Medical Care
Renal Freedom
26
Appendix 4
Peritoneal Dialysis Training SpecificationIntroductionPatient training is a key element in any peritoneal dialysis programme and a dedicated trainingteam is essential to provide well-educated patients who are able to care for themselves. The competent patient will have been trained in techniques to help reduce infection and preventother PD related complications.
Types of PD Training• CAPD• APD• Assisted APD (aAPD)• Post infection technique reviews
Trainer• They should be a registered nurse or health care assistant who has completed training
competencies• They should be part of a designated PD team• Should be available to teach on a 1:1 basis with the patient throughout training
TraineeIf capable, the individual patient should be taught how to perform the procedure themselves.However the carer may be trained if the patient is incapable. A team of assistants may beinvolved if Assisted APD is the treatment of choice.
Location of Training• Home – preferable location wherever possible• Designated training area in hospital
Training Programme• Handwashing and infection prevention• CAPD/ APD procedure• Catheter and Exit site care• Peritonitis - prevention and detection• Fluid balance• Problem solving• Diet• Exercise for PD patients• Sexual relationships• Ordering supplies
Training Aids• Training resources should be available to suit all learning needs, including physical disability,
learning disability, cultural needs, language needs, limited literacy and cognitive impairment• A variety of different resources should be used to suit the learners’ needs
27
Completion of TrainingTraining will be considered complete when as a minimum the patient or carer:
• Is able to perform the CAPD / APD procedure safely • Is able to recognise contamination and infection• Is able to list appropriate responses
On-going training• Education should be an on-going process throughout the patients PD experience • Revision of technique post infection is advisable• Regular “Patient workshops” provide the opportunity for patients to answer questions which
may have arisen since the initial training. It also provides the opportunity to reinforce goodpractice
28
29
CAPD Patient Training Record
Discussed Observed Competent SignatureOr
Demonstrated
Principles of PD• How toxins are removed• How fluid is controlled
Importance of hygiene• Importance of hygiene and
general cleanliness• Hand washing technique• Importance of keeping
equipment clean• Advice on infection control and
control/care of pets• Waste disposal
Exchange Procedure• Correct methods of heating bags• Checking solution
- Type of fluid- Expiry date- Check for faults
• Exchange procedure• Explain rationale for 15 second
flush• Record information• Dispose of fluid
Exit Site Care• Exit site dressing and
immobilisation• Bathing and showering• Recognising infection and taking
appropriate action
Fluid balance• Record weight and understand
significance• Understand use of different fluid
strengths• Demonstrate understanding of
fluid overload• Demonstrate understanding of
dehydration
Problem solvingState action to take if:• Not draining in or out• Fibrin in line• Contamination of line• Split in catheter or line
30
Discussed Observed Competent SignatureOr
Demonstrated
• Blood in effluent• Develop hernia• Develop leak• Sickness or diarrhoea
Medication• State significance of PO4 binders
and 1 alpha• State significance of laxatives in
PD• Specify use of each of their own
drugs
Diet• Demonstrate an understanding
of reason for increasing proteinintake.
• Discuss fibre and constipation• Refer to dietician if appropriate
Peritonitis• Understand how to prevent• Understand how to detect• Discuss action to be taken
Ordering supplies• Demonstrate how to order PD
supplies• Discuss where to store supplies• Demonstrate what to do if
supplies run out
General Health• Discuss regular exercise• If smoker, discuss smoke
cessation initiatives
Lifestyle• Sexual relationships/body image -
give opportunity to discuss• Employment issues• Holidays and travel• Offer opportunity to meet social
worker
Diabetic Patients• Advice to use appropriate blood
sugar monitor• Ensure patient is having regular
diabetic check-ups
Appendix 5
Specification for the provision of Assisted Peritoneal Dialysis
Aim of treatmentPeritoneal dialysis is a home-based treatment. Many patients with end-stage kidney diseasewould prefer to receive their dialysis at home (or in a nursing-home), but are unable to carry outthe technique on their own. Assisted Peritoneal Dialysis is where a paid carer performs all orpart of the dialysis treatment, thereby enabling more patients to receive their treatment in thecommunity (the alternatives being hospital haemodialysis or conservative care).
Assisted Peritoneal DialysisAssistance can be provided by a home carer for either CAPD or APD.
PatientsPatients will be clinically suitable for PD but unable to perform exchanges independently byvirtue of impaired physical or cognitive function. These will include:
• Incident end-stage kidney disease patients (planned and unplanned)• Prevalent PD patients who have lost their independence • Prevalent HD patients because of their own preference, failure of vascular access or inability to
tolerate HD• Failing renal transplant patients
Role of home carerEach individual patient will be under the care of a renal unit, which will supervise their overallcare and delivery of peritoneal dialysis equipment and fluid supplies. The carer is expected toprovide assistance with the peritoneal dialysis technique, check the patient’s exit site, bloodpressure and weight, and communicate formally with the renal unit. There are various modelsof care for assisted PD depending on the modality used:
Assisted CAPD: This will require up to 3-4 visits/day of 40 min duration.
Assisted APD:Model 1: Patient/family carries out connection/disconnection from machine.
Carer visits for approximately 30 minutes/day (any time of day) to take usedbags off machine, discard them, place new bags on to machine, and set upmachine for use in the evening by the patient.
Model 2: Patient cannot carry out connection/disconnection. This necessitates twovisits/day: morning - disconnect patient from machine, remove and discardused bags, set up machine for evening; evening – connect patient tomachine.
Carers Carers should have experience of healthcare in the community, basic healthcare assistanttraining and should receive training in competencies required for assisted peritoneal dialysis.Staffing levels required will depend on the model of care chosen, the number of patients on theprogramme and the carer travelling time involved.
31
Appendix 6
Source DocumentsCommissioners and providers should take responsibility for making references to the latestversion of the various documents and guidance.
References
1. Ansell D, Feehally J, Fogarty D. Tomson C, Williams AJ, Warwick G. UK Renal Registry Report2008
2. Jager KJ, Kosevaar JC, Dekker FW, Krediet RT, Boeschoten EW, NECOSAD study group. The effect of contraindications and patient preference on dialysis modality selection is ESRDpatients in The Netherlands. Am J Kidney Dis 2004; 43: 891-899
3. Oliver MJ, Quinn RR, Richardson EP, Kiss AJ, Lamping DL, Manns BJ. Home care assistanceand the utilization of peritoneal dialysis. Kidney International 2007; 71: 673-678
4. Couchoud C, Moranne O, Frimat L, Labeeuw M, Allot V, Stengel B. Associations between comorbidities, treatment choice and outcome in the elderly with end-stage renal disease.Nephrol Dial Transplant 2007; 22: 3246-3254
5. Chronic Kidney disease-Early identification & management of chronic kidney disease in adultsin primary & secondary care. NICE guideline 73. September 2008
6. Quality & Outcome Framework. Department of Health
7. The National Service Framework for Renal Services. Part One: Dialysis & Transplantation. 2004
8. PROMS
9. Renal Association working party on Peritoneal Dialysis. January 2009 (draft)
10. Renal Association Clinical Practice Guideline for Peritoneal Access. January 2009
11. Recommendations of the National Renal Workforce Planning Group 2002
12. Renal Association -Clinical Practice Guideline for Peritoneal Dialysis. May 2007
13. Dialysis Away from Base Working Group. Department of Health 2009
14. A dialysis manifesto. The All-party Parliamentary Kidney Group. October 2008
15. Commissioning for Children and Young People with Diabetes
32
www.kidneycare.nhs.uk
For further copies contact:
PrologProlog HouseSudburySuffolkCO10 [email protected]
Kidney Care