Executive Summary

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.


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 the recommendations 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
National Service Standard 2
National Service Standard 3
National Service Standard 4
National Service Standard 5
National Service Standard 6
National Service Standard 7

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

PCIP's (Primary Care Investment Plans)

PCG/Ts 4/02
SAFF's (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.