Executive Summary of the Kidney Alliance Report ‘End Stage Renal Failure — A Framework for Planning and Service Delivery’

A - Introduction
B - The case for a commissioning framework
C - Existing building blocks for continuous quality improvement
D - National Service Standards
E - Structures necessary and organisation of services
F - Milestones and responsibilities
G - Appendices

A The Kidney Alliance, an umbrella body representing all organisations involved in renal services, was formed in 1998 to bring together the voices of patients and committed professionals. The Alliance has produced this document as a forerunner to a National Service Framework for renal services. The driving force has been the need to break away from the damaging culture of reactive management, which has become the habitual manner by which the problems of this rapidly growing service have been addressed, in favour of an approach exemplified by shared ownership of the problems and solutions, responsible investment and planned development. The document is intended for use by commissioners and providers in planning renal services over the next ten years. The initiative concentrates on end stage renal failure (ESRF), which constitutes the largest workload in the renal service and is the area most vulnerable to variations in quality. It also concentrates on the management of adults recognising that the management of children with renal disease will require further specialist attention.

B The first part of the document describes the current status of the service and the important epidemiological and demographic factors which will influence planning and expenditure in the next decade. Together they constitute the main justification for preparing this commissioning framework.

They are summarised as follows:

Increasing Acceptance rates in ESRF and Prevalence of RRT

Acceptance rates for RRT are rising but there remain geographical inequities.
The low prevalence rates for RRT compared with Europe reflect continuing difficulties in accessing the service rather than negative attitudes to treating ESRF.
Since acceptances exceed death rates, the numbers receiving RRT (stock) will not plateau for at least 10 years.
Since transplant rates are static the number of patients on dialysis will continue to increase.
Despite the success of transplantation and PD, HD remains the default therapy for all ESRF and the proportion of dialysis patients on HD will continue to increase.

Smouldering Demographic Changes

Increasing acceptance rates of the elderly and poor access to transplantation in this group is increasing the mean age and co-morbidity burden of the dialysis population. There are consequences for support services such as cardiac and vascular surgery, rehabilitation and social services.
Increasing acceptance of diabetics increases overall co-morbidity since most have complications including coronary, cerebrovascular and peripheral vascular disease and retinopathy.
Asian and Afro-Caribbean minorities have 3-4 times the requirement for RRT than whites. These minority groups are still relatively young. As they age the demand for RRT will increase further.

Current problems with the Renal Service

The slow rate of HD decentralisation into new autonomous centres and satellites has caused congestion in most renal units often severe enough to compromise clinical care.
Dysfunction in commissioning includes lack of joint working between Health Authorities, a reluctance to accept responsibility for purchasing and crisis management in place of forward planning.
Lack of a regional perspective on commissioning perpetuates ‘blank spots’ in the UK which are still without autonomous renal services or even satellite units.
Difficulties in recruitment and retention of nurses are exacerbated by poor working conditions resulting from congestion and the associated compromises in quality.
Consultant expansion has not kept pace with the huge rise in RRT stock in the last ten years. The same is true for dietetics, counselling, social work and pharmacy support.

C The document then identifies the building blocks, which are already in place to support continuous quality improvement. Some of these are embodied in new NHS initiatives but some are renal specific.

These include:

The Renal Association’s initiative in clinical standards and audit. A third edition of the document ‘Treatment of Adult Patients with Renal Failure - Recommended Standards and Audit Measures’ is to be published in 2001.
UK Renal Registry, which with its electronic downloading of patient specific information, is the key to completing a powerful audit loop with the standards initiative. The UK Renal Registry now covers over 50% of the country and publishes an annual report.

D Seven National Service Standards are then described which constitute the core objectives of a strategic plan for renal services for the next decade. Wherever possible, the evidence base for there commendations is described. Some recommendations reflect the enlightened level of expectation of patients in a modern healthcare system. Other recommendations prescribe the developments needed to reverse the inequities in access to therapy and in quality, which have been characteristic of the UK renal service. These standards could be the basis of performance targets within the new NHS Performance Framework.

The seven National Service Standards are summarised as follows:

NATIONAL SERVICE STANDARD 1
Pre-Dialysis: Retarding Progression and educing the Comorbid Burden in Renal Disease Diabetic renal disease should be the focus of efforts to reduce the incidence of ESRF by effective glycaemic and blood pressure control, use of ACE inhibitors and cessation of smoking. The needs of the Asian community require special attention as they are at particular risk from diabetes and diabetic nephropathy. Diabetic patients who develop proteinuria (nephropathy) should be referred for local diabetology/ophthalmology assessment at an early stage. Guidelines for timely referral into nephrology should be agreed locally. Efforts to achieve the standards in the National Service Framework for Coronary Heart Disease for reducing cardiovascular risks in the population should be vigorously supported. Efforts to implement the recommendations in the National Service Framework for Diabetes should be supported. Since Primary Care is well placed to deliver these standards, adequate resources should be made available to allow them to succeed. NHS Performance Health Improvement Fair Access Health Outcomes.

NATIONAL SERVICE STANDARD 1

Pre-Dialysis: Retarding Progression and educing the Comorbid Burden in Renal Disease

Diabetic renal disease should be the focus of efforts to reduce the incidence of ESRF by effective glycaemic and blood pressure control, use of ACE inhibitors and cessation of smoking.
The needs of the Asian community require special attention as they are at particular risk from diabetes and diabetic nephropathy.
Diabetic patients who develop proteinuria (nephropathy) should be referred for local diabetology/ophthalmology assessment at an early stage. Guidelines for timely referral into nephrology should be agreed locally.
Efforts to achieve the standards in the National Service Framework for Coronary Heart Disease for reducing cardiovascular risks in the population should be vigorously supported.
Efforts to implement the recommendations in the National Service Framework for Diabetes should be supported.
Since Primary Care is well placed to deliver these standards, adequate resources should be made available to allow them to succeed.

NHS Performance

Health Improvement
Fair Access
Health Outcomes.

NATIONAL SERVICE STANDARD 2
Preparation for Renal Replacement Therapy (RRT) All patients with chronic renal failure and a plasma creatinine above 150 µmol/l and/or significant proteinuria (>1gm/24hr) should be referred to specialist nephrology. Patients with creatinine >300 µmol/l should be referred urgently if there is no strong contraindication to further treatment as a significant number will be approaching or will have reached ESRF. All patients with ESRF who, after discussion between the multidisciplinary team, themselves and their families, are deemed likely to benefit should be offered RRT. Commissioners should audit the number of patients entering RRT as ‘late’ uraemic emergencies as a first step to developing mechanisms to ensure the proportion is reduced to a minimum. Structured education and counselling of patients approaching ESRF involving the multidisciplinary team and other patients and carers should aim for the seamless entry onto RRT using the patient’s chosen modality. Timely healthy initiation of appropriate RRT demands unimpeded access to the main dialysis modalities, which in turn requires planned expansion of facilities in line with current prediction of need. There should be no 'waiting list' for dialysis nor should any patient be commenced on a therapy known to be inappropriate. While it is accepted that the number of transplant centres in the UK will not increase their staffing should allow transplant surgeons, physicians and co-ordinators to carry out clinics in autonomous renal centres to streamline screening of potential recipients and to maximise morale, local organ retrieval, live donation and pre-emptive transplantation. Commissioners should be aware that the benefits of erythropoietin therapy in pre-dialysis patients (which is producing cost pressures in the service) are based on increasingly firm evidence. NHS Performance Fair Access Effective Delivery Patient/Carer Experience Health Outcomes.

NATIONAL SERVICE STANDARD 2

Preparation for Renal Replacement Therapy (RRT)

All patients with chronic renal failure and a plasma creatinine above 150 µmol/l and/or significant proteinuria (>1gm/24hr) should be referred to specialist nephrology.
Patients with creatinine >300 µmol/l should be referred urgently if there is no strong contraindication to further treatment as a significant number will be approaching or will have reached ESRF.
All patients with ESRF who, after discussion between the multidisciplinary team, themselves and their families, are deemed likely to benefit should be offered RRT.
Commissioners should audit the number of patients entering RRT as ‘late’ uraemic emergencies as a first step to developing mechanisms to ensure the proportion is reduced to a minimum.
Structured education and counselling of patients approaching ESRF involving the multidisciplinary team and other patients and carers should aim for the seamless entry onto RRT using the patient’s chosen modality.
Timely healthy initiation of appropriate RRT demands unimpeded access to the main dialysis modalities, which in turn requires planned expansion of facilities in line with current prediction of need. There should be no 'waiting list' for dialysis nor should any patient be commenced on a therapy known to be inappropriate.
While it is accepted that the number of transplant centres in the UK will not increase their staffing should allow transplant surgeons, physicians and co-ordinators to carry out clinics in autonomous renal centres to streamline screening of potential recipients and to maximise morale, local organ retrieval, live donation and pre-emptive transplantation.
Commissioners should be aware that the benefits of erythropoietin therapy in pre-dialysis patients (which is producing cost pressures in the service) are based on increasingly firm evidence.

NHS Performance

Fair Access
Effective Delivery
Patient/Carer Experience
Health Outcomes.

NATIONAL SERVICE STANDARD 3
Vascular and Peritoneal Access Trusts with autonomous renal centres should ensure adequate surgical expertise and theatre time is dedicated to vascular and peritoneal access. One weekly theatre session per 120 patients (approximately) on dialysis is needed. Service level agreements between the renal service and departments of general or vascular surgery and radiology should stipulate case mix and numbers of operations/interventions required per annum. Arrangements involving transplant surgeons may be possible in some centres. Seniority and expertise of surgeons/radiologists involved should be audited together with survival rates of natural fistulae, tunnelled catheters and CAPD catheters. Access operations should be timely to ensure the majority of planned (non emergency) patients have functioning, ‘permanent’ access when dialysis commences. Overall the service should aim to have the percentage of new HD patients with natural arteriovenous fistulae (AVFs) approach the European average of 66%. Efforts to reverse the decline in the proportion of HD patients using AVFs should aim to return to the European average for prevalent patients (80%) which will involve cooperation with surgical departments, Trusts and commissioning agencies. These initiatives will require an elevation of the profile of access surgery in manpower planning and continuing discussions between the Specialist Workforce Advisory Group (SWAG) and Postgraduate Deans. NHS Performance: Effective Delivery Efficiency Patient/Carer Experience Health Outcomes

NATIONAL SERVICE STANDARD 3

Vascular and Peritoneal Access

Trusts with autonomous renal centres should ensure adequate surgical expertise and theatre time is dedicated to vascular and peritoneal access. One weekly theatre session per 120 patients (approximately) on dialysis is needed.
Service level agreements between the renal service and departments of general or vascular surgery and radiology should stipulate case mix and numbers of operations/interventions required per annum. Arrangements involving transplant surgeons may be possible in some centres.
Seniority and expertise of surgeons/radiologists involved should be audited together with survival rates of natural fistulae, tunnelled catheters and CAPD catheters.
Access operations should be timely to ensure the majority of planned (non emergency) patients have functioning, ‘permanent’ access when dialysis commences. Overall the service should aim to have the percentage of new HD patients with natural arteriovenous fistulae (AVFs) approach the European average of 66%.
Efforts to reverse the decline in the proportion of HD patients using AVFs should aim to return to the European average for prevalent patients (80%) which will involve cooperation with surgical departments, Trusts and commissioning agencies.
These initiatives will require an elevation of the profile of access surgery in manpower planning and continuing discussions between the Specialist Workforce Advisory Group (SWAG) and Postgraduate Deans.

NHS Performance:

Effective Delivery
Efficiency
Patient/Carer Experience
Health Outcomes

NATIONAL SERVICE STANDARD 4
Effective Delivery: Renal Association Standards and Continuous Quality Improvement Haemodialysis should be provided thrice weekly for >90% of patients. Haemodialysis adequacy should be assessed regularly and should achieve either URR>65% or Stable Kt/V >1.2, in >90% of patients. Disconnect systems for peritoneal dialysis should be provided to all PD patients by 2001. Peritoneal dialysis adequacy should be measured and the daily fluid volume adjusted regularly to ensure the combined fluid/natural renal creatinine clearance exceeds 50l /week / 1.73m² body surface area or weekly urea kt/v exceeds 1.7. APD or HD should be available for patients who cannot achieve these levels of adequacy. Correction of anaemia: Haemoglobin should be maintained >10g/dL in all patients unless there is a specific medical reason. Commissioners should ensure that adequate mechanisms and funding are in place for provision of erythropoietin and iron to achieve this goal. All autonomous renal units and their satellites should be linked to the UK Renal Registry within 2 years. Service providers should carry out regular audits of their compliance with current dialysis standards and download this data to the UK Renal Registry for national collation and comparison. Staffing levels in renal centres should reflect the time necessary to carry out systematic audit. Funding bodies and Trusts should support renal professionals engaging in peer review through advisory inspections since they could constitute a powerful aid to continuous quality improvement. Wherever possible, Commissioners and Trusts should support improvement of the evidence base for standards of clinical care for ESRF patients. NHS Performance: Effective Delivery Efficiency Health Outcomes.

NATIONAL SERVICE STANDARD 4

Effective Delivery: Renal Association Standards and Continuous Quality Improvement

Haemodialysis should be provided thrice weekly for >90% of patients.
Haemodialysis adequacy should be assessed regularly and should achieve either URR>65% or Stable Kt/V >1.2, in >90% of patients.
Disconnect systems for peritoneal dialysis should be provided to all PD patients by 2001.
Peritoneal dialysis adequacy should be measured and the daily fluid volume adjusted regularly to ensure the combined fluid/natural renal creatinine clearance exceeds 50l /week / 1.73m² body surface area or weekly urea kt/v exceeds 1.7. APD or HD should be available for patients who cannot achieve these levels of adequacy.
Correction of anaemia: Haemoglobin should be maintained >10g/dL in all patients unless there is a specific medical reason. Commissioners should ensure that adequate mechanisms and funding are in place for provision of erythropoietin and iron to achieve this goal.
All autonomous renal units and their satellites should be linked to the UK Renal Registry within 2 years.
Service providers should carry out regular audits of their compliance with current dialysis standards and download this data to the UK Renal Registry for national collation and comparison.
Staffing levels in renal centres should reflect the time necessary to carry out systematic audit.
Funding bodies and Trusts should support renal professionals engaging in peer review through advisory inspections since they could constitute a powerful aid to continuous quality improvement.
Wherever possible, Commissioners and Trusts should support improvement of the evidence base for standards of clinical care for ESRF patients.

NHS Performance:

Effective Delivery
Efficiency
Health Outcomes.

NATIONAL SERVICE STANDARD 5
Patient/Carer Experience ESRF patients should receive care and support which encourages inclusion of therapy into their overall lifestyle. Treatment should be in comfortable and convenient surroundings and delivered at times consistent with regaining or maintaining employment and maximising rehabilitation into society. ESRF patients should expect to access regular HD, CAPD and outpatient review as close to their homes as possible. Access to consultant time, nursing, dietetic, social work, counselling advice and pharmacy support should be equitable irrespective of place of residence or treatment. For the majority, one-way travel time for these services should be less than 30 minutes. HD centres should have parking, waiting and changing areas appropriate for ‘life-long’ attendance. RRT patients with intercurrent problems requiring hospitalisation should expect to be admitted to single sex areas in dedicated nephrology wards staffed by nurses trained in renal medicine and dialysis. Nephrology beds should be expanded in line with the expansion of dialysis stock so that the admission of a RRT patient to an ‘outlying’ ward is exceptional. Each patient should have a named nurse responsible for assessment and planning of care. Patients and carers, through their local KPAs and the NKF, should expect to be involved in local planning and the setting of Service Level Agreements and to be co-opted onto provider planning committees, onto renal sub groups of RSCGs and onto national initiatives including the setting of Clinical Standards. Dialysis patients should be free to holiday in the UK or overseas. This will require investment in the health economies of popular UK destinations. It will require the creation of facilities in all HD units for temporary 'isolation' of patients returning from areas overseas which are high risk for blood borne virus infections. NHS Performance: Fair Access Effective Delivery Health Outcomes

NATIONAL SERVICE STANDARD 5

Patient/Carer Experience

ESRF patients should receive care and support which encourages inclusion of therapy into their overall lifestyle. Treatment should be in comfortable and convenient surroundings and delivered at times consistent with regaining or maintaining employment and maximising rehabilitation into society.
ESRF patients should expect to access regular HD, CAPD and outpatient review as close to their homes as possible. Access to consultant time, nursing, dietetic, social work, counselling advice and pharmacy support should be equitable irrespective of place of residence or treatment. For the majority, one-way travel time for these services should be less than 30 minutes.
HD centres should have parking, waiting and changing areas appropriate for ‘life-long’ attendance.
RRT patients with intercurrent problems requiring hospitalisation should expect to be admitted to single sex areas in dedicated nephrology wards staffed by nurses trained in renal medicine and dialysis. Nephrology beds should be expanded in line with the expansion of dialysis stock so that the admission of a RRT patient to an ‘outlying’ ward is exceptional.
Each patient should have a named nurse responsible for assessment and planning of care.
Patients and carers, through their local KPAs and the NKF, should expect to be involved in local planning and the setting of Service Level Agreements and to be co-opted onto provider planning committees, onto renal sub groups of RSCGs and onto national initiatives including the setting of Clinical Standards.
Dialysis patients should be free to holiday in the UK or overseas. This will require investment in the health economies of popular UK destinations. It will require the creation of facilities in all HD units for temporary 'isolation' of patients returning from areas overseas which are high risk for blood borne virus infections.

NHS Performance:

Fair Access
Effective Delivery
Health Outcomes

NATIONAL SERVICE STANDARD 6
Conservative management of ESRF, Palliative Care and Withdrawal from Dialysis Patients with progressive renal failure in whom dialysis is deemed inappropriate or who choose not to start RRT should continue to receive the benefit of the resources available to the renal service to provide a robust support package. Service level agreements with funding authorities should recognise the value of anaemia management in alleviating many of the symptoms of ESRF in patients who are not receiving RRT. In the terminal phase of ESRF, a management plan, including the preferred location of care, should be agreed with the patient, his/her carer, family and GP. An ‘open door’ policy for urgent admission to the nephrology ward should be agreed with the Primary Care Team, District Nurses and the local palliative care services. Links with Hospices and agencies involved in terminal care should underpin a culture of ‘openness’ in the renal service in which patients can feel free to discuss withdrawal from dialysis and in which they can feel confident that care will be appropriate to allow death with respect and dignity. NHS Performance Effective Delivery Patient Carer Experience.

NATIONAL SERVICE STANDARD 6

Conservative management of ESRF, Palliative Care and Withdrawal from Dialysis

Patients with progressive renal failure in whom dialysis is deemed inappropriate or who choose not to start RRT should continue to receive the benefit of the resources available to the renal service to provide a robust support package.
Service level agreements with funding authorities should recognise the value of anaemia management in alleviating many of the symptoms of ESRF in patients who are not receiving RRT.
In the terminal phase of ESRF, a management plan, including the preferred location of care, should be agreed with the patient, his/her carer, family and GP. An ‘open door’ policy for urgent admission to the nephrology ward should be agreed with the Primary Care Team, District Nurses and the local palliative care services.
Links with Hospices and agencies involved in terminal care should underpin a culture of ‘openness’ in the renal service in which patients can feel free to discuss withdrawal from dialysis and in which they can feel confident that care will be appropriate to allow death with respect and dignity.

NHS Performance

Effective Delivery
Patient Carer Experience.

NATIONAL SERVICE STANDARD 7
Equity of Provision Regions, in conjunction with the UK Renal Registry, should carry out yearly gap analyses to update an NHS register of patients receiving RRT which will allow poorly providing Health Authorities to plan to ‘correct upwards’ to UK then European levels for their particular population characteristics. Elimination of ‘blank spots’ will require new HD facilities which should be located to balance the need for local services for large towns, economy of scale and travel times. Commissioners should recognise that new autonomous renal units may have a greater impact on local acceptance and prevalence rates and Consultant numbers than ‘hub and spoke’ expansion. New facilities developed in the context of Managed Clinical Networks should aim to achieve equity of provision and a Consultant based service with appropriate support services delivering uniform standards of care. NHS Performance Fair Access Efficiency Health Outcomes

NATIONAL SERVICE STANDARD 7

Equity of Provision

Regions, in conjunction with the UK Renal Registry, should carry out yearly gap analyses to update an NHS register of patients receiving RRT which will allow poorly providing Health Authorities to plan to ‘correct upwards’ to UK then European levels for their particular population characteristics.
Elimination of ‘blank spots’ will require new HD facilities which should be located to balance the need for local services for large towns, economy of scale and travel times.
Commissioners should recognise that new autonomous renal units may have a greater impact on local acceptance and prevalence rates and Consultant numbers than ‘hub and spoke’ expansion.
New facilities developed in the context of Managed Clinical Networks should aim to achieve equity of provision and a Consultant based service with appropriate support services delivering uniform standards of care.

NHS Performance

Fair Access
Efficiency
Health Outcomes

E The document then describes how some of the new NHS structures, particularly regional specialised commissioning groups (RSCGs), can interface with consortia of Health Authorities and new Primary Care Groups/Trusts to create a framework which will ensure that the National Service Standards are deliverable. Also discussed is the new thinking which will be necessary on the configuration of renal facilities in order to ensure that there is equity of provision and adequate rates of expansion of consultant nephrologists and other professional groups.

F The document then sets out a timeframe for the framework to be put in place and for the delivery of the objectives embodied in the National Service Standards. Since many of the recommended structures flow with the stream of change already taking place in the NHS, some of the timeframes are relatively short. This section also recommends the agencies responsible for the achievement of each milestone. They are summarised as follows:

REGIONAL

Milestones	Responsibilities	Timetable
Commissioning structure operational	RSCG	4/01
Baseline assessment of needs/gap analysis	RSCG	4/01
Regional Implementation and Investment plan	RSCG	4/01
Plan for Consultant expansion	RSCG	4/01
Establish monitoring system	RSCG	4/02

RSCG PRIORITIES REFLECTED IN HEALTH PLANNING

Milestones	Responsibilities	Timetable
HIMPs (Health Improvement Programmes)	HAs	4/02
PCIPs (Primary Care Investment Plans)	PCG/Ts	4/02
SAFFs (Service and Financial Frameworks)	HA to PCT/Trust	4/02
Joint protocols for referral of chronic renal failure	PCT/Trusts	4/02

COSTINGS

Milestones	Responsibilities	Timetable
Agreement on template for costing ESRF	NHS Executive	4/02
Establish Benchmarking system for Trusts (25% take up)	RSCG	4/02
Guidelines on the responsibilities for prescribing erythropoietin and immunosuppressant drugs	RSCG	4/02

INFORMATION AND AUDIT

Milestones	Responsibilities	Timetable
Link all renal facilities to National Renal Registry	RSCG	4/02
RSCG reporting framework in place including residence based acceptance and stock rates of RRT	RSCG	4/02
Audit information not available from Renal Registry. Define Audit Plan	RSCG	4/02

G Finally, the appendices detail European comparisons of acceptance and prevalence rates for renal replacement therapy to illustrate the ‘gap’ which the UK faces to bring its renal services up to European levels. The biggest challenge within this is the achievement of appropriate staffing levels. These are discussed for a number of professional groups in the appendices.

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Last updated: 22 April 2008

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