Specification for the Commissioning of Peritoneal Dialysis Pathway

Transcription

1 Kidney Care Specification for the Commissioning of Peritoneal Dialysis Pathway Better Kidney Care for All

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3 Foreword We welcome this specification as the first comprehensive guide to best practice Peritoneal Dialysis (PD). Written for commissioners and providers of renal services, this specification will no doubt prove to be a vital tool in broadening the delivery of high quality PD, driving forward service improvement by offering greater choice and flexibility for patients across England including offering assisted PD as an alternative choice for kidney patients, particularly those who are elderly or frail whose only other options may be hospital haemodialysis or conservative management. We hope that this specification will be used by patients and commissioners as a guide to services they should be able to access; by providers to offer patients genuine modality choice; and by procurement departments to gain high quality, cost-effective services and supplies. If this work can achieve equity of patient access, consistent pricing and a full range of product availability in a competitive market, it should lead to an increase in home therapy, with all patients offered a real choice. Donal O Donoghue National Clinical Director for Kidney Care Department of Health Beverley Matthews Programme Director NHS Kidney Care 3

4 Executive Summary 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 an appropriate number of patients on home dialysis therapies. For renal units, it offers a patientcentred approach to PD provision. Outcome measures will assist in driving forward service improvements where necessary and the tender framework will inform procurement contracts. Background The 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 both in the number of patients on PD and the types of PD available. While it has been shown that 50% of patients given free choice will choose PD 2, the percentage on PD at ninety days ranges from 0 to 60% 1. At the same time, a population that is increasingly elderly and frail may be restricted to a choice between hospital haemodialysis (HD) and conservative care when assisted PD, (a standard therapy in several countries 3,4 but currently in it s infancy in the UK) might be more appropriate. Aims This document aims to achieve equity in patient access to all PD treatment modalities; to set standards for quality of care and outcomes; to maintain availability of the full range of PD products and services with competitive providers in PD market; and to achieve national consistency 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 the Renal Information Exchange Group. See Appendix 3. Summary The Specification is based on a patient-centred pathway (Appendix 1) following the patient journey from advanced Chronic Kidney Disease into dialysis. There are five sections, each with measurable outcomes. There is allowance for entry to the pathway from all routes. The expected route 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 NSF recommends a year of pre-dialysis preparation. The content is not currently defined but should include 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 relatively new modality to UK, not yet included in the renal tariff (see Appendix 5). Catheter insertion guidelines 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 recommended standards (Appendix 4). Maintenance treatment requires ongoing clinical support by staff with sufficient PD expertise. 4

5 Patient support by patients, IT links, customer friendly equipment delivery and DAFB are all important features. Advance directives and clear plans for patients discontinuing PD are an integral part of maintenance treatment. The specification adds in detail to the pathway. Each phase has measurable quality outcomes for commissioners to benchmark and providers to drive service forward. The service specification also forms the basis of a national tender framework. This will offer the individual components of the 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 trusts and consortia will contract against the national framework structure and prices to maintain consistency across the country. National specifications to be used for regional procurement are included (at Appendix 4 and 5) for Provision of Patient Training Services for Peritoneal Dialysis and Provision of Assisted Peritoneal Dialysis. Future tenders may be developed for Peritoneal Dialysis Catheter Insertion and the Provision of Pre-Dialysis Preparation and Education Programmes. We hope that this specification will be used by patients and commissioners as a guide to services they should be able to access; by providers to offer patients genuine modality choice; by procurement departments to gain high quality, cost-effective services and supplies. The recommended outcome measures should enable the specification to satisfy the terms of reference of the group. If this work can achieve equity of patient access, consistent pricing and a full range of product availability in a competitive market, there should be an increase in home therapy with all patients offered a real choice, including assisted PD as an established modality. 5

6 Standard Specification for the Commissioning of Peritoneal Dialysis This specification forms part of the Standard NHS Contract for Acute Services and should be considered by commissioners in conjunction with standards set out in The National Service Framework for Renal Services: Part One Dialysis and Transplantation. This specification sets what is required of a clinically safe and effective organisation that is providing care for children, young people and adults requiring peritoneal dialysis. It describes the interventions and actions required along the patient pathway as well as entry and exit points. This template service specification has been developed in partnership between commissioners and provider agencies, and is based upon evidence-based care and treatment models. It should be open to scrutiny and available to all service users/carers as a statement of standards that they can expect to receive. Description of Peritoneal Dialysis Peritoneal 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 patients given informed choice will opt for this modality). Peritoneal Dialysis should be delivered in the context of a comprehensive and integrated service for 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 before the 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 practice for children, young people and adults is four weeks before peritoneal dialysis. Children and Young People Children and young people with Established kidney failure are subject to all the usual pressures of childhood and growing up as well as the challenge of living with renal disease. Meeting their needs is key to delivering high quality services. Children need to be cared for in designated paediatric renal centres by appropriately trained staff. Moving from paediatric to adult units is a key element of their care that must be efficient. Transition policies are crucial if this segment of their care is to be managed appropriately. Introduction This specification has been developed by a national representative group of clinical experts and professionals and comprises six key sections: Section One: Section Two: Section Three: Section Four: Section Five: Section Six: Overview and aims of the service Service elements Service delivery Quality and governance Quality Indicators and Measurable outcomes Review Details of the group membership and individuals invited to comment in the development of this specification are shown at appendix 2 and 3. 6

7 Contents Section Heading Page 1. Service Overview Aim 1.2 Strategic 1.3 Commissioning 1.4 Communication 1.5 Patient Centred Care 2. Service Elements Entry to the Pathway 2.12 Preparation 2.13 Structure 2.14 People 2.15 Technology 2.16 Process 2.17 Culture 2.18 Goals 2.2 Initiation of Treatment Confirmation of modality decision 2.22 Preparation 2.23 Structure 2.24 People 2.25 Technology 2.26 Process 2.27 Culture 2.28 Goals 2.3 Catheter Insertion Preparation 2.32 Structure 2.33 People 2.34 Technology 2.35 Process 2.36 Culture 2.37 Goals 2.4 Patient Training Preparation 2.42 Structure 2.43 People 2.44 Technology 2.45 Process 2.46 Culture 2.47 Goals 7

8 2.5 Maintenance Preparation 2.52 Structure 2.53 People 2.54 Technology 2.55 Process 2.56 Culture 2.57 Goals 3. Service Delivery Geographical Coverage/Boundaries 3.2 Hours of Operation 3.3 Patient Pathway 4. Quality and Governance Quality Indicators and Measurable Outcomes Review Appendices 21 Appendix 1 Peritoneal Dialysis Patient Pathway Appendix 2 Group membership Appendix 3 Opportunities for comment Appendix 4 Specification for provision of PD patient training Appendix 5 Specification for provision of assisted PD Appendix 6 Source documents 8

9 1. Service Overview 1.1 Service Aims A patient pathway derived specification for Peritoneal Dialysis to be used nationally as a framework basis for contract tendering. 1.2 Strategic o To maintain number of competitive providers in PD market o To maintain availability of the full range of PD products and services o To achieve national consistency in pricing across England o To achieve equity in patient access to all treatment modalities o To set standards for quality of care and outcomes 1.3 Commissioning o To ensure that a full range of dialysis modalities is available from appropriate providers and is offered freely to patients o To inform development of Kidney Dialysis Tariff 1.4 Communication o To ensure effective communication with key stakeholders o To report appropriately to Kidney Care Programme Board o To develop Communication Strategy to share outcomes 1.5 Patient-Centred Care o Ensure views of all stakeholders, including patients and carers, are considered 9

10 2. Service Elements 2.1 Entry to the pathway Patients will approach peritoneal dialysis (PD) by various routes. Adequate preparation and education is essential in each scenario. o Planned from Renal Clinic The preferred route, with an expectation that it includes the majority of patients. From the renal clinic, patients to transfer to a low clearance/pre-dialysis service on agreed, locally developed, IT supported protocols reflecting renal function and predicted time to dialysis o Planned from other parts of the renal unit Patients choosing to change modality or failing on haemodialysis (HD) or transplant to have the 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) should encourage timely referral into the renal service o From primary care Existing mechanisms of Chronic Kidney Disease (CKD) guideline 5 and Quality Outcome Framework (QOF) 6 targets to identify patients sufficiently early to enter the renal clinic but any patients with more advanced CKD could enter at the preparation phase o Unplanned presentation Patients presenting late and requiring acute dialysis to be offered an accelerated route through 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 the opportunity to revisit this education and choice at a later date o All renal units to have ongoing analysis of their patient flow onto dialysis Preparation This stage should meet the NSF target 7 of education more than one year pre-dialysis and ensure unbiased access to all treatment modalities Structure o Dialysis preparation provided within an integrated specialised renal service o A specialised low clearance service (probably a dedicated clinic) to offer a full range of balanced renal education o Infrastructure able to offer all PD modalities (CAPD, APD, assisted CAPD and assisted APD) o An accelerated pathway option to accommodate non-planned starters o Capacity for home visits and review of home circumstances o Locally developed protocols supported by IT should be developed to allow a protocolised trigger to refer patients from renal clinics o Ability to offer peer-support by a patient buddy system 10

11 2.14 People o 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 carers o Primary care to be involved in the planning process 2.15 Technology o Robust IT support to trigger referral, progress through process and provide subsequent audit trail. Ideally able to connect between NHS services o IT literature, websites and decision aids to reach a minimum standard for content o Printed literature to minimise duplication and use environmentally preferred materials and processes 2.16 Process o PD education and preparation to be appropriately timed, perhaps using decision making milestones compatible with RA and NSF guidelines o 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 to make an informed modality choice in a timely manner o Patient to have a named nurse/contact for queries o Once modality is chosen, opportunity to revisit education at regular intervals or have further education if necessary o If chosen modality is assisted PD, support services to be involved at this point o 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 Culture 2.18 Goals o Empowered holistic view of CKD (including patients social and environmental context) o Increased exposure to PD in Specialist Registrar curriculum 9 o Removal of bias in patient groups (e.g. age, disability and ethnicity) by education o Create culture of environmental sustainability in kidney care awareness raising in staff and patients o Patients enabled to make an informed choice o The service provided to be seamless 11

12 2.2 Initiation of Treatment Confirmation of modality decision A key step between pre-dialysis preparation and catheter insertion, to allow timely insertion of PD catheter 7, Structure o 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 population o PD facilities to be available in satellite dialysis units o 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 People o Identify family members or carers who will need to be involved in training o Primary care services to continue to be involved in treatment plans o Trained PD nurses to be provided at recommended 1 to 20 patients 11 Sufficient health care assistants to be available to provide assisted APD o 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 champion o 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 Technology o Use of IT audit tools and information systems 2.24 Process o Formal handover from pre-dialysis team o Suitably trained PD nurse to assess patient and family (ideally at home) o Decision made on most suitable type of PD o Empower extended care facilities if necessary o Sign off suitability for treatment modality, patient expectation of treatment and agreement between patient and staff 2.25 Culture 2.26 Goal o Increase awareness of PD in doctors and other renal patient groups o Appropriate patients start PD as their treatment of choice 12

13 2.3 Catheter Insertion 2.31 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 be performed within two weeks and for an urgent catheter insertion within 24 hours o Availability of both day case and in-patient procedures o Patients to have choice of procedure date within the 18 week pathway o Pre-dialysis clinics to have systems ensuring that patients are offered catheters at appropriate level of renal function 7 avoiding emergency catheter placement or temporary haemodialysis 2.32 People o Staff appropriately trained in PD catheter insertion 10 could include surgeons, radiologists and renal clinicians, both medical and nursing o Renal MDT continue to be involved 2.33 Technology o Full range of PD catheters to be available according to clinical need. (Where environmentally preferable products available, services to justify the purchasing of alternative products. Product evaluation criteria to be developed) o General and local anaesthetic at patient s choice if clinically appropriate 2.34 Process o Scheduling of procedure, type of anaesthetic and day case/in-patient at choice of patient o Pre-procedure preparation according to local guidelines o Catheter insertion to follow current best practice guidelines 10 o Post-op care according to local guideline o Planned follow-up until catheter is used, including bowel care 2.35 Culture 2.36 Goal o Patient-centred service o Environmentally sustainable care o A working catheter placed in a timely, flexible fashion 13

14 2.4 Patient Training This must be done at an appropriate time for the patient s CKD and healing of catheter insertion site 2.41 Structure 2.42 People o Dedicated competent PD training team and location, in proximity to pre-dialysis and PD maintenance teams o Training to be available flexibly both in place (hospital, satellite, home) and time, including weekends and evenings if necessary o 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. This should be patient centred in terms of delivery times and frequency. Rapid installation and emergency deliveries should be available. Patients should have the security of known delivery staff and safe key storage if necessary. Stock should be delivered to the point of use and rotated by date o Patient and family or carers if necessary for assisted APD o Renal MDT including named nurse and consultant o Primary care team 2.43 Technology o 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 machines o 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 and services, except where clinical needs determine otherwise o Inclusion of future innovations as they arise 2.44 Process o Check that catheter is patent o Flexible training to suit patient for location and timing o Competency based training tailored to patient needs o Identify named nurse and consultant o Develop individual care plan o Offer buddy support o Formal sign off by trainer and patient of adequate training and effective dialysis o Follow up home visit o First Peritoneal Equilibration Test, clearance and clinic appointment according to RA guidelines Culture 2.46 Goal o Training tailored to full range of patient needs o Patient with competency-based knowledge; adequately dialysed and independent at home 14

15 2.5 Maintenance 2.51 Structure o A dedicated PD area containing beds and chairs. To include waiting and clinical areas for education/training, treatment and consultation; storage space for equipment and notes; 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 nurses and/or doctors-drop in, line changes etc, training clinic o Accessible to wheelchair/ambulance service and acute services o 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 training o Availability of specific young people s support group o 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 to patient basis. Those patients in need of allocation for business, education, family emergency, bereavement etc should be able to negotiate what they require 7,13,14. Costings, which are agreed between renal unit and supplier, to be transparent 2.52 People o PD to have a senior dedicated medical or nursing champion o Trained PD nurses at current recommended ratio of 1:20 11 o Nurses in other renal areas to be trained in the basics of PD (particularly in-patient areas but also HD and Transplant) o Dieticians, social workers, psychologists to have PD knowledge and be available at the recommended numbers 11 o Doctors in training to have sufficient exposure to PD to develop appropriate competencies 9. This to include home visits, clinics, access insertion and collaboration with the PD nursing team o Community support engaged - including family, carers and outside agencies where necessary o Primary care team to be involved o Interpreters to be available to gain access to ethnic groups o Access to learning disabilities teams to be available where necessary o 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 Technology o 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 machines o 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-scoring products and services, except where clinical needs determine otherwise o Inclusion of future innovations as they arise 15

16 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 languages o Equipment for learning disabilities/cognitive problems/hearing loops 2.54 Process o To be clearly linked into training, possibly with a formal sign-off o 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 staff o Outpatient care and monitoring to meet the RA guidelines 9 o Home delivery established o Clinics to be available in centre and closer to home, with flexible times to suit working patients and access to full MDT o 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. Close liaison with local health agencies, hospices, primary care, social workers will be required. Regular review as required level of assistance may change o Advance care planning to include recognition of changes in the patient and the suitability of PD as a modality. This will include increased social support; access to specialist surgery for EPS (Manchester and Cambridge); planned transfer to assisted APD or HD; planned end of life care if necessary 2.55 Culture 2.56 Goal o Patient advocacy o Professional respect for clinical decisions o Accessible care for all patient demographics o PD accessible and available without discrimination 16

17 3. Service Delivery 3.1 Populations and Geographical Boundaries o Dialysis services are commissioned at a specialised commissioning level and would generally serve populations greater than 500,000 o The geographical areas covered by the service will be available, i.e. PCT catchment populations should be defined o Efficient patient transport arrangements need to be established. Particular consideration should be given to meeting the transport needs of children and young people, who may have to travel long distances to received specialist care 3.2 Hours of Operation Adequate 24/7 arrangements should be in place with a standard service being available from 9am 5pm Monday to Friday, and out of hours care available from appropriately trained clinical staff. 3.3 Patient Pathway The PD patient pathway is shown at appendix 1. 17

18 4. Quality and Clinical Governance issues Service providers will be required to deliver significant efficiency savings whilst retaining high quality 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 of kidney care in the Commissioning for Quality and Innovation (CQUINs) payment system for acute 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 National core competencies for renal staff. Many renal units throughout the UK have completed, or are in the process of completing, nurse competencies and there is a need to standardise and share good work. Practitioners who practice in renal units or other settings need to ensure they optimise the care they provide for patients receiving peritoneal dialysis treatment. A minimum competence framework is designed to enable the practitioners to enhance knowledge underpinning practice, to gain confidence by perfecting practice and to optimise care for the patient receiving peritoneal dialysis. o Staff will be competently trained. Examples of EDTNA-endorsed competencies for renal specialists can be accessed at o The Group Manager for Peritoneal Dialysis will be notified immediately of any incidents relating to the PD service and action taken as appropriate to the nature of the incident o Complaints specifically in relation to the Peritoneal Dialysis service will be forwarded to the Group Manager for Renal Services and will be formally acknowledged within five working days. The provider will endeavour to deal with the complaint promptly to resolve the immediate problem and document an action plan in order prevent any recurrence 18

19 5. Quality Indicators and Measured Outcomes Area National/local guidance Quality Indicator Measurable Output Preparation Renal NSF Renal Association clinical guidelines Meet NSF clinical guideline Patient satisfaction survey 8 Ensure informed patient choice Percent starting dialysis with planned access Percent choosing PD Percent choosing conservative kidney management All units to have education protocols in place Percent educated 1 year predialysis Initiation of treatment Renal NSF Renal Association clinical guidelines Percent changing decision from initial preparation Percent starting with permanent access All children should be treated in a designated nephrology and dialysis centre Percentage of changed decisions (c) Percent starting with permanent access All children should have access to renal trained paediatric nurses Catheter Insertion Renal Association/Inter national Society for PD clinical guidelines Meet RA clinical guideline 10 Patient satisfaction survey 8 Cancellation rate (18 wk pathway) Percent with functioning catheter at 6 weeks Exit site infection rate Number of good or excellent patient satisfaction reports Number of cancelled procedures Patient Training Renal Association clinical guidelines Timely first time treatment 7 Adequate training sign-off by 6 week 8 Peritonitis free by 6 weeks 80% of planned PD patients start on PD Number with training signoff at 6 weeks Number peritonitis free at 6 weeks Number on assisted PD Maintenance Renal NSF Renal Association Clinical Guidelines BRS Workforce Planning Report Dedicated PD nursing staff (1 W.T.E. per 20 patients) should be part of the multidisciplinary team 11 PD patient demographics (equivalent to whole renal population) 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 dialysis nursing staff ratio Demographic data provided Number failing PD Percent on assisted PD Percent with advance care plan Measure renal association quoted standards 19

20 6. Review The Service needs to identify a method of agreeing measurements for continued improvement of the service Service Specification for the Provision of a Appendix 1 Peritoneal Dialysis Service Appendices A method and process must be recognised to identify unmet need and bring it to the attention of commissioners A review date will be identified The review must include details of specifications needed for continuing fitness for purpose and the provider s delivery against this specification Primary care Identified by CKD guideline 1,2 Renal Unit Patient choice or Failing Tx & HD Hospital / A&E Local guidelines for timely RRT referral Late presenters Accelerated/pa arallel pathway PD Patient Pathway The process for the review will be detailed Identification of how compliance against the specification will be monitored in year will be clearly stated Renal Clinic Progression by GFR Preparation Initiation Maintenance Confirmation Insertion Training Structure People Technology Integrated specialist renal services Infrastructure offering all PD modalities (CAPD,APD assisted PD & assisted APD) Buddy system via patient forum 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 Consider use of IT decision making aids IT pathways and Renal Patient View Dedicated PD service with clear links to pre-dialysis Meet all needs (ethnicity, language, age, disability, literacy) Patient, family & carers included GP/district nurse must be involved Dedicated renal MDT (Nurses, doctors, dieticians, social workers, psychologists ) 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 Dedicated PD training team Meet full range of patient needs Training at home or in the unit Set up patient-centred supply delivery contract Patient, family, carers (assisted) Renal MDT and primary care Full range of PD systems, fluid, connectology, ancillaries, & training equipment. To meet sustainability targets & include future innovations 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 sites Ward staff to have adequate PD knowledge Engaged community support & primary care Full range of technology, fluid & ancillaries IT-dialysis prescription & patient chat rooms Process 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 Home visit at this stage Involve extended care facilities as necessary Assisted PD available if patient or carer unable to perform PD Sign off suitability, patient expectation & agreement Timing to suit the patient & RA guideline 6 GA/LA as patient choice Availability of day case bookingflexible & patient orientated 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 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 Culture Empowered holistic view of CKD Increased exposure to PD in SpR curriculum Removal of bias in patient groups by education Increase awareness of PD in doctors & other renal patient groups Patient-centred service Training tailored to full range of patient needs Patient advocacy Professional respect for clinical decisions Accessible care for all patient demographics Goals Measured Outcome Patients enabled to make an informed choice The service provided should be seamless 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 Appropriate patients start PD as their chosen treatment Percent changing decision from initial preparation Percent starting with permanent access 3 A working catheter placed in a timely, flexible fashion RA insertion audit measure 6 Patient satisfaction survey 4 Cancellation rate (18 wks) Patient with competency based knowledge; adequately dialysed & independent at home Timely first time treatment 3 Number on assisted PD Adequate training sign off by 6 weeks 4 Peritonitis free at 6 weeks 8 80% of planned PD patients start on PD PD accessible & available without discrimination Number on assisted PD against agreed criteria Patients lost to PD each year PD patient demographics ( equivalent to whole renal population) Percent with advanced care plan Patient to peritoneal dialysis nursing staff ratio Measure renal association quoted standards References 1. NICE CKD guideline 2. QOF 3. Renal NSF 4. PROMS 5. Renal Association PD working party 6. RA guideline catheter insertion 8. RA guideline PD Transplant HD End of Life Care 20

21 Appendix 2 Group Membership Julie Asbury Lindsey Barker (Chair) Edwina Brown Holly Cocker Liz Cropper Simon Davies Debra Day Richard Dodds Barbara Dollery Christine Emerton Liam Horkan Caroline Judge Bev Matthews Andrew Mooney Anne Morris Sanjeev Narwal Angela Newman Donal O'Donoghue Rob Pearce Angela Ridge Mario Varela Bernadette Weaver Optima Healthcare Consulting Consultant Nephrologist, Royal Berkshire NHS Foundation Trust Renal Association, Consultant Nephrologist, Imperial College Healthcare NHS Trust Kidney Patients Association, patient representative CKD Nurse Consultant, University Hospital of North Staffordshire NHS Trust Renal Association, Consultant Nephrologist, University Hospital of North Staffordshire NHS Trust/Keele University Procurement Manager, Barts and The London NHS Trust NHS Standard Contract Lead, Department of Health PD Sister, Royal Berkshire NHS Foundation Trust Optima Healthcare Consulting Procurement, East of England British Renal Society, Matron Renal Out patients Services. East Kent Foundation Trust Programme Director, NHS Kidney Care Consultant Nephrologist, Leeds NHS Acute Trust General Manager Renal and Transplant Directorate, North Bristol NHS Trust Category Lead Pharmacy & Renal Company: Healthcare Purchasing Consortium Lead Renal Commissioner, Pan London SCG National Clinical Director for Kidney Care, Department of Health NHS Supply Chain Senior Sister Peritoneal Dialysis, Dorset County Hospital NHS Foundation Trust Procurement, Barts and The London NHS Trust Procurement, East of England 25

22 Appendix 3 Opportunities for comment Organisation British Association of Paediatric Nephrologists British Renal Society Clinical Directors Forum Joint Speciality Committee Kidney Alliance Kidney Care Network Managers Kidney Research UK National Kidney Federation NHS Blood & Transplant Paediatric Audit & Registry Committee Renal Association Senior Nurses - Renal Units Specialised Commissioners for Kidney Services UK Renal Registry SHA Darzi Leads National Clinical Directors Baxter Healthcare Fresenius Medical Care Renal Freedom Title President President Chair Chair Chair All NE NW NW NW Y&H WM EM EoE SC L SW SEC CEO CEO KAG Chair President Via All NE NW Y&H WM EM EoE SC L SW SWSHA SEC Chair 26

23 Appendix 4 Peritoneal Dialysis Training Specification Introduction Patient training is a key element in any peritoneal dialysis programme and a dedicated training team 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 prevent other 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 Trainee If 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 be involved 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

24 Completion of Training Training 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 good practice 28

25 CAPD Patient Training Record 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 solving State action to take if: Not draining in or out Fibrin in line Contamination of line Split in catheter or line Discussed Observed Competent Signature Or Demonstrated 29

26 Discussed Observed Competent Signature Or 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 protein intake. 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 30

27 Appendix 5 Specification for the provision of Assisted Peritoneal Dialysis Aim of treatment Peritoneal dialysis is a home-based treatment. Many patients with end-stage kidney disease would prefer to receive their dialysis at home (or in a nursing-home), but are unable to carry out the technique on their own. Assisted Peritoneal Dialysis is where a paid carer performs all or part of the dialysis treatment, thereby enabling more patients to receive their treatment in the community (the alternatives being hospital haemodialysis or conservative care). Assisted Peritoneal Dialysis Assistance can be provided by a home carer for either CAPD or APD. Patients Patients will be clinically suitable for PD but unable to perform exchanges independently by virtue 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 carer Each individual patient will be under the care of a renal unit, which will supervise their overall care and delivery of peritoneal dialysis equipment and fluid supplies. The carer is expected to provide assistance with the peritoneal dialysis technique, check the patient s exit site, blood pressure and weight, and communicate formally with the renal unit. There are various models of 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 used bags off machine, discard them, place new bags on to machine, and set up machine for use in the evening by the patient. Model 2: Patient cannot carry out connection/disconnection. This necessitates two visits/day: morning - disconnect patient from machine, remove and discard used bags, set up machine for evening; evening connect patient to machine. Carers Carers should have experience of healthcare in the community, basic healthcare assistant training 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 the programme and the carer travelling time involved. 31

28 Appendix 6 Source Documents Commissioners and providers should take responsibility for making references to the latest version of the various documents and guidance. References 1. Ansell D, Feehally J, Fogarty D. Tomson C, Williams AJ, Warwick G. UK Renal Registry Report 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 ESRD patients in The Netherlands. Am J Kidney Dis 2004; 43: Oliver MJ, Quinn RR, Richardson EP, Kiss AJ, Lamping DL, Manns BJ. Home care assistance and the utilization of peritoneal dialysis. Kidney International 2007; 71: Couchoud C, Moranne O, Frimat L, Labeeuw M, Allot V, Stengel B. Associations between co morbidities, treatment choice and outcome in the elderly with end-stage renal disease. Nephrol Dial Transplant 2007; 22: Chronic Kidney disease-early identification & management of chronic kidney disease in adults in primary & secondary care. NICE guideline 73. September Quality & Outcome Framework. Department of Health 7. The National Service Framework for Renal Services. Part One: Dialysis & Transplantation PROMS 9. Renal Association working party on Peritoneal Dialysis. January 2009 (draft) 10. Renal Association Clinical Practice Guideline for Peritoneal Access. January Recommendations of the National Renal Workforce Planning Group Renal Association -Clinical Practice Guideline for Peritoneal Dialysis. May Dialysis Away from Base Working Group. Department of Health A dialysis manifesto. The All-party Parliamentary Kidney Group. October Commissioning for Children and Young People with Diabetes 32

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30 Kidney Care For further copies contact: Prolog Prolog House Sudbury Suffolk CO10 2XG