The underpinning values for the NSF are that it must be: Holistic, Patient Centred, Equitable, High Quality and Equally Accessible.

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1 Dear Chief Executive/Director I am the Project Manager for the Renal NSF in Wales. I was appointed at the end of February 2003 and since then have been responsible for facilitating the development of the NSF. A Project Board has been set up to guide and oversee the development of the NSF. Its members have been appointed by the National Assembly Government. The membership of the Project Board is attached. Objectives The objectives of the NSF are to set standards and to establish best practice for renal medicine in Wales. We aim to establish a clinical structure within Wales which will: minimise the incidence of renal failure; slow down or prevent the progression of renal disease to established renal failure ensure that all individuals, whatever their background, ethnicity or location, are able to make an informed choice about their renal therapy, and have access to the highest possible quality of renal services, tailored to the individual needs of patients and those close to them. Underpinning Values The underpinning values for the NSF are that it must be: Holistic, Patient Centred, Equitable, High Quality and Equally Accessible. Performance Indicators The NSF will establish a set of National Performance Indicators against which the service will be assessed. As a part of this process a directory of Best Practice will be set up on the Renal NSF website. Innovations and other best practice achievements will be published in a bulletin board format on the website. I would be grateful if you could bring this to the attention of your staff and encourage them to participate. I hope this will encourage dialogue and discussion around the various developments in renal medicine and indicate the best way that improvements in practice can be implemented. Approach The NSF will be developed through a series of four modules the details of which are attached. Each module will establish standards, collect a basic data set, compare current practice against these standards and recommend an implementation programme to bring the service up to the required level. A number of complementary groups will underpin the work of the modules, including patient/carer experience, IT, primary/secondary/tertiary/social care interfaces, research and workforce issues. The Project Board will ensure a co-ordinated and complementary approach is taken to these issues.

2 Communication Strategy As part of our communication strategy a website is currently under construction. It will highlight developments within all the modules, outline the decisions taken by the project board and encourage feedback from all stakeholder groups. I will follow up all highlights published on the web with newsletters for those who do not have intra/internet access. I would also like to establish contact with each of the organisations/trusts/stakeholder groups who have an interest in the NSF and its development. I would encourage each organisation to identify an individual who can act as a renal lead within that organisation. I believe that in this way we can keep everyone up to date with our progress and developments and respond positively to any feedback. Any feedback should pay particular attention to the patient pathway and the need to reduce variations in inequality of service and outcomes, including those associated with ethnicity, social deprivation and social exclusion. I look forward to hear from you as soon as possible with your nomination/s for contact person as I will be sending my next newsletter, which will highlight membership to the modules and progress to date along with the launch date of our website, very shortly. Yours sincerely Cathy Mansell Renal NSF Project Manager Tele: Cathy.Mansell@Wales.gsi.gov.uk.

3 Attachment 1 Project Board Membership Membership Designation E Mail address 1. Professor Terry Feest External Advisor Terry@feest.co.uk 2. Dr Aled Phillips Module 1 Chair Phillipsao@cf.ac.uk 3. Dr Lionel Bloodworth Module 2 Co Chair Lionel.Bloodworth@nwwtr.wales.nhs.uk 4. Dr Kesh Baboolal Module 2 Co Chair Kesh.baboolal@uhwtr.wales.nhs.uk 5. Dr Peter Drew Module 3 Co Chair Peterdrew@lineone.net 6. Mr Rafael Chavez Module 3 Co Chair 7. Mr Dave Thomas Module 4 Chair Rafael.Chavez@cardiffandvale. wales.nhs.uk David.Thomas@cardiffandvale. wales.nhs.uk 8. Dr Richard Moore Workforce Planning Co Chair Richard Moore@cardiffandvale.wales.nh s.uk 9. Dr Andrew Williams Workforce Planning Co Chair AJWil52@lineone.net 10. Dr Kieron Donovan Baseline Audit Kieron.Donovan@cardiffandvale.wales.nhs.uk 11. Mrs Hilary Pepler Trust Rep Hilary.Pepler@newtr.wales.nhs.uk 12. Dr Geoffrey Carroll HCW geoffrey.carroll@hcw.wales.nhs. uk 13. Barbara Trahar CHC Rep 14. Ms Dawn Oliver Nursing Rep Dawn.Oliver@cd-tr.wales.nhs.uk 15. Dr John Marsden WKPA James.Marsden@ntlworld.com 16. Chris Pritchard Social Work rep Chrispritchard@gwynedd.gov.uk 17. Dr David Roberts GP rep David.roberts@gpw92034.wales.nhs.uk 18. Kay Howells LHB rep Kay.Howells@bridgendlhb.wales.nhs.uk 19. Paediatric representative

4 20. Professor John Williams Co-Chair 21. Mr Mike Ponton Co-Chair 22. Ms Cathy Mansell Project Manager k 23. Ms Cathy White Policy Lead 24. Miss Sue Paterson Policy Lead uk 25. Mrs Jan Firby Policy Lead 26. Miss Maggie Parker Nursing Advisor k 27. Dr David Salter Principal Medical Advisor David.Salter@wales.gsi.gov.uk

5 Attachment 2 The modules of the NSF will cover the following: Module 1: Primary prevention, pre-dialysis and acute renal failure Causes of ESRF Diagnosis of renal impairment leading to ESRF Primary care for renal disease Overlap with the CHD, Older People and Diabetes NSFs Anaemia management of pre-dialysis patients Early referral Management of acute renal failure Module 2: Effective delivery of dialysis Preparation for dialysis Selection of patients Patient information and advice Informed choice of modality Vascular and Peritoneal Access Planned initiation of dialysis including testing and immunising against BBV Peritoneal Dialysis All forms of peritoneal therapies including APD, IPD CAPD Anaemia management Peritonitis Haemodialysis Service planning including capacity issues Access and service configurations In centre heamodialysis Home haemodialysis Anaemia management Acute potentially reversible renal failure Patient issues Patient transport services Holiday dialysis Social care and support Module 3: Transplantation

6 Integration of medical and surgical input Selection of patients Patient information Consideration of live transplant donation Access to transplantation Organ donation: Cadaver (heart beating and non heart beating donation) & live donation Commissioning guidance for renal transplant services Organ retrieval Allocation of organs General surgery for renal patients by Transplant Surgeons Immnosuppressive drug therapies Management of the failing transplant surgery Module 4: Alternative Models of Care Conservative or supportive management of ESRF Palliative care Withdrawal from dialysis.