Renal NSF Consultation Kidney Wales Foundation

Welsh Assembly Government 1-3 Museum Place

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12th May 2006

RESPONSE TO DRAFT CONSULTATION DOCUMENT: DESIGNED TO TACKLE RENAL DISEASE IN WALES: A NATIONAL SERVICE FRAMEWORK

Introduction

This response is submitted by The Kidney Wales Foundation to the consultation Designed to Tackle Renal Disease in Wales: A National Service Framework (March 2006).

The Kidney Wales Foundation is a body whose mission is to promote excellence in renal research, treatment, education and the support of patients and their families across Wales.

This is additionally achieved through supporting the promotion, provision, maintenance and improvement of kidney dialysis units in hospitals, schools of medicine and universities: by the provision of equipment, laboratories or facilities to relieve kidney patients and by the promotion and publication of medical research into renal and other diseases.

Kidney Wales fully supports the publication of the Renal NSF as it heralds recognition of, and a strategic response to, the needs of people suffering from kidney disease or at risk of developing renal problems.

Response to thedraft NSF

Kidney Wales is pleased to note the recognition that implementing change to tackle renal disease must take place in the context of the broader transformation of the services in Wales. To effectively improve services to people suffering or at risk of suffering from renal disease there needs to be a clear and strong focus on promoting and protecting people’s health and an integrated and fully engaged approach to the delivery of renal support in primary, secondary and tertiary care.

Increasingly support for patients, carers and families will need to be delivered in the community and it is crucial that the potential contribution of less traditional providers of support such as community pharmacists is fully recognised and developed. In addition the increasing role of informal carers, volunteers and organisations such as

ours in bridging the gap between need and state support should be more widely acknowledged and more formally recognised by inclusion in, and consultation on, any proposals for the re-design of local or national renal services.

We are pleased to support the overall thrust of the NSF document and in particular the recognition that delivering effective renal services will require:

  • Preventing renal disease rather than waiting for it to occur
  • Detecting renal disease early when it does occur
  • Improving access to all elements of renal disease diagnosis and treatment
  • Providing better designed, better delivered renal services.

We would wish to see an equal focus given to the prevention of renal disease as is given to the identification and prevention of other key chronic diseases such as diabetes and coronary heart disease.

Where renal impairment is detected patients must have prompt access to specialised care and this care is delivered in a way that reduces any further inconvenience to patients. Dialysis services need to be provided close to home and at a time that is convenient to patients. For this to happen there needs to be a significant investment in dialysis services and this investment needs to take into account the expected increased demand for services in the future. Chronic kidney disease and established renal failure has become increasingly common and there has never been a greater demand for renal services. This is being driven by demographic change, with the population becoming older and living longer and an increase in ethnic mix. Unfortunately the current picture is one where demand for services has increased, while dialysis and inpatient capacity has remained essentially static and the transplant rate has plateaued.

It is against this background that every effort must be made to increase the opportunities for transplantation by increasing the number of kidneys available. Kidney Wales was involved in the launch of the Lifelong Wales Donor Register which was the forerunner of the UK computer donor register and again stands ready to support initiatives to increase donor numbers.

Through the NSF we would encourage the setting of clear standards for the delivery of care at all stages of the patient journey and the production of supporting information that meets the needs of patients. Kidney Wales would be pleased to be consulted on the establishment of care standards and would hope to be included as a partner through representation on the All Wales Renal Advisory Group and the two formal renal networks that are planned to be established.

Kidney Wales would recommend that a greater emphasis is given in the NSF to the crucial role that research performs in improving the care of patients. Kidney Wales has opened the Kidney Wales Institute of Nephrology in Cardiff and continues to provide financial support to cover core staff costs. This is a practical and tangible expression of the importance that we place on the role of research and we would urge that the NSF sets clear standards for investment in renal research.

We are particularly pleased to note that Module 1 recognises the particular needs of children and young people. This important and vulnerable group often rely on the

support of their family and friends and the service needs to meet the needs of the patient and their families. We need to ensure that services that are designed around the needs of adults are equally responsive to the needs of children and young people. We support the inclusion of children’s standards in the NSF that are additional to the standards set for adults. In particular Kidney Wales can provide support in the provision of structured educational support for children and their families.

It was very disappointing to see that in Module 4, no mention was made of a purpose built Kidney Transplant Unit at the UniversityHospital of Wales. Prior to 1995, kidney transplantation was performed at the Cardiff Royal Infirmary in a specialised unit of nine beds, which was opened in 1982 by the Secretary of State for Wales. The Kidney Research Unit for Wales Foundation was instrumental in organising a public campaign to provide funds for the building and equipping of this unit. Following the closure of the Cardiff Royal Infirmary, transplant activities were moved to the Heath site, but without any special provisions being made. A Review of Transplant and Renal surgery in Wales by the Specialist Health Services Commission of Wales in the late 90’s recommended immediate reinstatement of such dedicated beds.

We understand that the Cardiff and Vale Trust have drawn up a proposal for a 21 bedded Transplant and Renal Surgery Ward and Outpatient Suite which will cost in the region of £6.1M capital and £2.1m revenue. The Trust has submitted this for approval to Health Commission Wales. However, Health Commission Wales and the Welsh Assembly Government have made no move to implement this.

We at the Kidney Wales Foundation regard this as most detrimental to the transplant service. We would therefore be willing to enter into a funding arrangement whereby we would make a commitment to the building costs, just as we did twenty four years ago. We hope that this will provide a stimulus to take the scheme forward.

Summary

In summary the key strategic aims of Kidney Wales will:

  • Provide a dynamic, high quality and focussed approach to fundraising for renal research, care and education which is responsive to the needs of clinical institutions, patients and their families.
  • Invest funds in new services, facilities and equipment as part of an on-going programme that will give added value to statutory funding.
  • Work in partnership with other organisations to share experience and good practice.
  • Develop innovative programmes in renal research for the benefits of renal patients in the Welsh community.
  • Implementation of a sizeable bedded Transplant and Renal Surgery Ward and Outpatient Suite – where KWF would be able to assist in funding.

Kidney Wales supports the key principles contained in the NSF and looks forward to remaining an active partner in securing improved and effective renal services for the people in Wales.

Thank you for inviting Kidney Walesto respond to the consultation document and for allowing us the opportunity to input into the decision making process.

Please do not hesitate to contact us if we can help with any additional information.

Roy Thomas

Chairman

Vice Chairman: Raj Aggarwal.

Trustees: Dr Richard Moore, Prof John Salaman, Dr Mick Kumwenda, Moira Hall, Jason Harding.