ALL WALES CROSS PARTY KIDNEY GROUP  MEETING -15TH March 2011

WELSH KIDNEY PATIENTS ASSOCIATION’S SUMMARY

INTRODUCTION

The WKPA has been an all volunteer patient group since 1982 and a registered charity since 1995. The only independent renal charity in Wales, it is run entirely by unpaid volunteer patients/carers. It is a non-fund raising body. Our aim is to promote throughout Wales, the relief and welfare of persons suffering from kidney disease and renal failure.
The WKPA, through regular liaison and active involvement with the patient base, other patient groups, health professionals and government bodies has evolved into a well informed body of patient/carers with a sound knowledge of renal matters.
Currently we have approximately 3000 members, including pre-dialysis, dialysis and transplant patients, throughout Wales.

SUMMARY OF ACHIEVEMENTS 2007-2011

SERVICES PROVIDED FREE  DIRECT TO MEMBERS

 One of our fundamental aims is to provide support and emotional help to our members. To this end we have the following services that we provide for renal patients:-

1) The WKPA Befriending Service. This service is available at Morriston and UHW and is greatly valued by patients and staff alike. WKPA members, patients and carers, attend workshops and information evenings, support group meetings and pre dialysis clinics, to provide mutual support to fellow members. The Befriending Service was used as a model of good practice, together with the model from Guy’s Hospital, to develop “The Renal Befriending Toolkit” produced by the Institute for Innovation and Improvement in 2008

2) Kidney Matters Wales magazine. The independent voice of renal patients in Wales, is published three times a year and is issued free of charge to over 1350 members in Wales. Copies of the magazine are sent to 15 renal units across Wales. In addition copies are sent to the C.E.s of the HBs, The First Minister, the Minister of Health and Cross Party Renal Group AMs Since 2007, we have published 12 issues keeping members informed of relevant activities and developments.

 3) www.wkpa.org.uk. was established in May 2002. It is independently run and provides a wealth of information on all renal issues. The web master is a volunteer carer and also the Editor of Kidney Matters Wales

4) The WKPA established the Transplant Team sub committee and has supported competitors to the British Transplant games since 1993.

REPRESENTATION ON NHS BODIES

1)The All Wales Renal Clinical Network Board, which manages and decides how the renal budget is allocated across Wales, including the location of new dialysis units and upgrading of existing units. The WKPA representative has voting powers on the Network Board.

2) The Modernisation of Dialysis Transport Services Board. Our representatives have attended each meeting to ensure the patient view point is heard.  A pilot project is underway in St Woolos unit which aims to meet the 30.30 criteria laid down in the renal NSF for travelling times for patients to and from dialysis sessions.

3) Home Therapies Forum, which was set up in January 2011. The self Care unit at Morriston hospital has been successful in promoting home therapy to suitable patients. The Forum will discuss ways in which HT can be expanded to other units in Wales.

4) Organ Donation Committees at ABM/ Cwm Taf/ Aneurin Bevan HBs. These committees are set up by the Boards to improve the rate of organ donation within the Boards’ acute hospital. The WKPA will send a representative to the Organ Donation Engagement Clinical Event to be held on March 29th 2011.

5) All Wales Clinical Research Governance Board. This Board was set up in April 2010 and two of our committee members have been appointed as lay members on the committee.

LIAISON WITH OTHER GROUPS

1) The WKPA is affiliated to the National Kidney Federation and sends a representative to the NKF’s A.G.M and Annual Conference. This enables our Association to be involved in renal issues throughout the UK

2) In September 2007 the WKPA actively support the Plus campaign launched by KWF

3) The WKPA is one of the eight charities that signed up to the Donate Wales and Tell a Loved One campaigns launched in 2008

4)In 2008 the WKPA became involved with WAG, BHF, DiabetesUK Cymru, The Stroke Association, Cancer patient groups and National Leadership and Innovation Agency for Health in Wales in developing the guidance document ‘Involving Adult NHS Service Users and Carers’ published in 2010.

5) Participation and involvement with the BHF “Hearty Voices” programme, aimed at promoting patient involvement in NHS Wales.

6) The WKPA has been approached by the Renal Registry to ascertain ways in which the registry documents can be more relevant and helpful to patients. Units throughout the UK submit annual data to the registry on results and outcomes in the units

CONSULTATIONS

1) WKPA presented a petition to the Assembly’s Petition Committee requesting a change in the law on organ donation to a “soft” opt out. Oct. 2007

2) WKPA gave written and oral evidence to the Inquiry into presumed consent for organ donation held by WAG. 2008

3) WKPA responded to the Consultation document on proposals for the future of Specialised and Tertiary Services. This document had proposed that the provision of dialysis services be de-specialised, a move that would have been detrimental to the provision of care to our members. 2009

4) WKPA responded to the consultation on options for changes to the organ donation system in Wales. August 2009

APPRAISALS

The WKPA participates in appraisals by the All Wales Medical Strategy Group. This helps to ensure that all renal patients in Wales are able to have access to the best possible drugs available for the management and treatment of renal disease.

SURVEYS

The WKPA regularly surveys its members on services and facilities for renal care. The results help us to monitor standards of renal services and are used to re-enforce our requests for better provision.

MAJOR ACHIEVEMENTS

The opening of the new renal Transplant Unit at UHW in August 2010 realised another long term aim of the Association. The WKPA presented a 32,000 strong petition to Jane Hutt as long ago as 1999 for a new transplant unit. It is pleasing and rewarding to see hard fought battles come to fruition. 
New units have been opened in Carmarthen, Haverfordwest, and Alltwen. The unit at Welshpool is underway. However, there is lack of provision in other areas that needs to be addressed.

FUTURE AIMS

The introduction of a “soft “opt out system of donation has been a long time goal of the Association and its members.  It is hoped, that with the vote in the recent referendum in favour of more law making powers for the Assembly, this law will be introduces in Wales. It is pleasing to learn that the Health Minister has announced that the Assembly will withdraw its request for an LCO in this matter.
Campaign to ensure that the hospital dialysis transport systems are improved throughout Wales so that dialysis patients will no longer have long delays to and from their units.
Campaign to make sure that dialysis capacity is increased to meet future demand--- renal failure will increase by 7% each year over the foreseeable future.

CONCLUSION

All of the above provides an overview of the day to day commitment shown by the WKPA committee in its aims to improve the lives of renal patients. Patients/carers themselves, committee members have direct experience of all aspects of renal disease and replacement therapies. They provide an important insight into life as a renal patient and thus make an invaluable contribution in monitoring, maintaining and improving the provision of renal services in Wales.

The All Wales Cross Party Kidney Group of AMs, inspired and set up by the WKPA in 2002, has been of great assistance to the Association in its efforts to improve renal services. It is well known that the number of people needing dialysis is increasing. The provision of dialysis is costly, and the current economic climate means that we can not rest on our laurels.  The need to have the continued support of the All Wales Cross Party Kidney Group is crucial in the future.
The Association, on behalf of its 3000 members, would like to thank the AMs and the Minister for continuing to support the aims and work of the WKPA.

John Reever
Chair