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
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.
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
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.
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
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.
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.
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.
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.
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.