Cymdeithas Cleifion Arennau Cymru Welsh Kidney Patients Association

Cymdeithas Cleifion Arennau Cymru Welsh Kidney Patients Association Response to Consultation Document Designed To Tackle Renal Disease In Wales: A National Service Framework MAY 2006

FOREWORD May 2006 Renal NSF Consultation Major Health Conditions and Clinical Support Services Team Welsh Assembly Government Cathays Park Cardiff CFlO 3NQ. The Welsh Kidney Patients Association covers East, South, West and Mid Wales and has over 1500 members. We liase with the KPAs of North Wales who have 700 members and we are all affiliated to the National Kidney Federation. It is the patients' own organisation run entirely by patients on a voluntary basis. Within this area there are two tertiary centres, one at UHW, Cardiff, which has the only transplant centre in Wales, and one at Morriston hospital, Swansea There are 5 satellite units: - Newport, Cardiff, Llantrisant, Carmarthen, Aberystwyth, and Merthyr Tydfil. North Wales has three units, Ysbyty GlancIwyd, Bangor and Wrexham Maelor. Members in South Wales receive a quarterly magazine, Kidney Matters Wales, and we run a web site: - www.wkva.org.uk. The WKPA had representation on the Project Board of the renal NSF and on each of the five modules. The following surveys have been carried out by the WKPA 1) The Haemodialysis patient satisfaction survey, April 1999: 2) The level of care survey of patients in South and Mid Wales, Jan. 2000 3) Satisfaction survey of Home haemodialysis patients, April 2002 4) WKPA survey of parents' response to the proposal to transfer paediatric nephrology to Bristol, July 2002 5) Patient survey haemodialysis unit at Morriston hospital, April 2003 6) Patient survey Transplant Nephrology Ward B5 UHW, April 2003 In March 2000 the WKPA handed 32,000-signature petition for a new transplant unit at UHW to the Minister of Health and Social Services, Welsh Assembly Government. We have conducted a survey of our members to ascertain their views on the renal NSF and to find out the level of awareness of the NSF. Of the 203 replies received, 72% stated that a large investment is needed to implement the standards and, if this investment is not forthcoming, 55% stated that renal services will deteriorate as a result. The full results of the survey are shown in Appendix A of this response. We submit this response on behalf of our members. We wish to see the final NSF standards document presented as one complete publication in a bound book John Reever, Chairman Gloria Owens, Vice Chair

Committee Members Jeff Baker, Ken Bisnath, Jean Bowen, Annette Burton, Jan Evans, Eiddwen Glyn, Caroline Jones, Helena Jones, Diane Masters, Dr. Richard Moore, Bill Morgan, John Owens, Mike Ruck Distribution List Mr. Simon Dean, Chief Executive Health Commission Wales Mr. Hugh Ross, Chief Executive, Cardiff and Vale NHS Trust Miss. Jane Perrin, Chief Executive, Swansea NHS Trust Mr. Paul Williams, Chief Executive, Bro Morgannwg NHS Trust Mr. Paul Barnett, Chief Executive, Carmarthenshire NHS Trust Mrs. Allison Williams, Chief Executive, Ceredigion and Mid Wales NHS Trust Mr. G. Kershaw, Chief Executive, Conwy and Denbighshire NHS Trust Mr. Martin P. Turner, Chief Executive, Gwent Healthcare NHS Trust Ms. Hilary Peplar, Chief Executive, North East Wales NHS Trust Mr. Paul Hollard, Acting Chief Executive, North Glamorgan NHS Trust Mr. Martin Jones, Chief Executive, North West Wales NHS Trust Mrs. M. Hodgeon, Acting Chief Executive, Pembrokeshire & Derwen NHS Trust Mrs. Margaret Foster, Chief Executive, Pontypridd and Rhondda NHS Trust Mr. Paul Miller, Chief Executive, Velindre NHS Trust Mr. Roger Thayne, Chief Executive, Welsh Ambulance Services NHS Trust Mr. Peter Johns, Director, Board of Community Health Councils in Wales Chief Officers, Community Health Councils in Wales Chief Officers, Local Health Boards in Wales

1 INDEX Introduction 2-3 Standard 1. Care for All 4 Module 1. Care for Children and Young People Children's Standards 1-10 Module 2. Prevention of Chronic Kidney Disease and Management of Acute Renal Failure Adult Standards 2-6 Module 3. Effective Delivery of Dialysis Adult Standards 2-6 Module 4. Organ Donation and Transplantation Adult Standards 7-11 Module 5. Alternative Models of Care Adult Standards 14-17 4-6 7 8-10 11-12 13 Conclusion 14 Appendix A - Survey of Members 15-16 Comments from Individuals 17-18 List of Abbreviations used in Response document 19

2 Introduction The WKPA welcomes the renal NSF (Wales), and strongly endorse the standards. However, we have grave reservations on the ability of the Commissioners and the NHS in Wales to deliver all of these standards. The Commissioning Process on page 26 of the document requires the LHBs and HCW to "bring about changes that are needed in the way renal services are currently provided in order to meet the NSF standards." At the same time, there is no mention of the extra resources that will be needed to implement the standards. Whilst much of the renal NSF may be achieved through preventative measures, reorganisation of services, clinical networking etc, the fact remains that the provision of haemodialysis is expensive. Renal Revelations, a document by the NKF dated November 2003, states that there are 34,000 ESRF patients in the UK, together they account for 2% of the NHS budget. The Renal NSF states that "Future demand is predicted to rise year on year by 3-4% in total patients requiring RRT. In view of the changing demography of the population, there will be annual increase of 7% in number of patients requiring haemodialysis." In the opinion of the WKPA this figure should read an annual rise of 10%. It is clear that the need to provide adequate dialysis will not go away. The standards in Module 3 will not be achieved without substantial dedicated investment. Page 15, Section 5(b) of the document, Strategic Framework 1 up to March 2008, aims to increase the take on rate for replacement therapy to 154 per million from the current 128 per million, to help meet rising demand. (As a consequence the prevalent haemodialysis patient population will rise from 820 as at July 2004 to 1060 by March 2008). Appendix 5 Part 2(g) Page77 of "Design for Life" contains only one scheme for strategic development of dialysis services at Cardiff and Vale NHS Trust. This has yet to receive dedicated funding from WAG. This scheme alone will not provide for the increase in the take on rate for RRT. Neither will it address the problems for patients living in the rural areas of Wales, who currently have to travel long distances to and from their units. WAG should ensure that more funding is made available within the timescale of Strategic Framework 1 i.e. 2005-2008, for expansion in haemodialysis capacity across Wales. Page 15 Section 5(b) also aims to have 725,000 people in Wales registered as organ donors. The aim to optimise the opportunities for transplantation by increasing the number of kidneys available must be supported by the provision of a new renal transplant unit at UHW. The current transplant facilities are woefully inadequate and operate under severe pressure through the lack of dedicated beds and theatre time. There are 202 patients in Wales on the transplant waiting list. (UK Transplant statistics March 2005). UHW has an excellent living donor scheme and a non-heart beating donor scheme. It is one of the few centres in the UK that offer dual pancreas/kidney transplants. Transplant patients are at risk from cross infection due to the lack of dedicated beds. During the average life of a renal transplant (10 years), the cost in saving for the NHS on dialysis provision is 250,000. Transplant units in England are under threat of closure with a move to reduce their numbers to eight. For Wales to ensure that we retain this unit, which is the only one in Wales, it is imperative that dedicated funding is given for a new transplant unit. This will restore the unit to its position of a centre of excellence in Europe.

3 Appendix 5 Part2 (g) Page 77 of Design for Life refers to the new renal transplant unit at UHW. No capital or revenue funding has been allocated to this scheme. In 2000, the WKPA presented the Minister with a 32.000 strong petition supporting the provision of a dedicated renal transplant unit at UHW. The OBC for this has been on going for 6 years. The current situation is that WAG are prepared to fund the capital cost, however, HCW and Cardiff and Vale NHS Trust have yet to reach agreement on the extra revenue required. In the meantime, the renal transplant provision in Wales is in jeopardy. The current facility will be unable to implement Standards 7-12 in Module 4, Organ Donation and Transplantation. HCW are seeking ways to bring back other services provided by centres in England with a view to reducing costs to the NHS in Wales. It is the opinion of the WKPA that, not to fund the extra revenue for a new renal transplant unit will be a "short term fix" On the other hand to do so would be a "long term solution". The WKPA urges WAG, HCW and Cardiff and Vale NHS Trust to provide the necessary capital and revenue funding for this unit within the timescale of Strategic Framework 1. i.e. 2005-2008

4 Standard 1. Care for All. The key interventions in this standard will make a positive impact on the way that renal services are delivered and it is hoped that the renal patient will benefit from these. Key Intervention 3 will need investment in staffing levels. All of the current units have staff shortages in all categories. This level of staff shortfall will not be addressed by establishing renal networks. The MDRTs should include a dietician, pharmacist, renal clinical psychologist, renal social worker, trained renal nurses, nephrologists, trained access surgeons and transplant surgeons. The WKPA would like to see these categories of staff specifically listed in the NSF. Key intervention 4, the introduction of an all Wales information system is welcome. It will, however, bring forward more patients needing care at the specialists units, which are already full to capacity. With regard to 4(b) patients attending clinics at UHW benefit from automatic same day transfer of results. The WKPA would like this system to be available to patients at all renal units in Wales. The Renal Association has introduced an IT Programme "Patient View" whereby patients are able to view their results and medicines on-line. Currently, only the unit at Morriston hospital and the Children's unit at UHW have introduced this programme. The WKPA would like this facility extended to include all the renal units in Wales. Module 1. Care For Children and Young People The WKPA supports the 10 standards for children in the renal NSF and notes that the implementation is to come under the auspices of the Children's NSF. The WKPA welcomes the fact that inpatient paediatric nephrology has been restored to Cardiff from Bristol. It is hoped that paediatric haemodialysis provision will now be stable at UHW. This provision came under serious threat in 20.02 with the transfer of inpatient care to Bristol. It is imperative that this service remains in Wales. In addition, with a provision of a new transplant unit at UHW, a feasibility study should be held with a view to returning the paediatric transplantation service to Wales. It is hoped that the setting up of managed clinical networks will enable treatment to be delivered as close to home as possible. This is particularly true for North Wales, where children have to travel to centres in England for haemodialysis treatment. Standard 1. Overarching Standard Children in Wales receive treatment in England, and as such, the English renal NSF standards must also be taken into considerations when planning paediatric services. It is important that quality of care and clinical excellence must not be compromised. All the key interventions in this standard are supported. Standards 2-3. Prevention of CKD and Prevention, Recognition and Management of ARF The key interventions recommended will help to prevent CKD, and recognise and manage acute renal failure in children and are fully supported.

5 Standard 4. Established Renal Failure and Preparation for RRT Every effort should be made to inform families so that joint decisions can be made in conjunction with a full multidisciplinary renal team based in Wales. The key interventions are supported Standard 5. Transplantation Since 2002 children in South Wales have transplants carried out in Bristol. Children in North Wales receive their transplants at centres in England. Once stable, children in South Wales receive much of their after care at UHW. Therefore, it is most important that the results from both centres are electronically available to both teams. This is also important for children living in North Wales. Living donor operations at Bristol are carried out in two distinct centres. Should it be possible to return this provision to UHW, both donor and recipient would be cared for at one unit. This would reduce cold ischaemic time and reduce family trauma and stress. Standard 6. Dialysis Every effort should be made to ensure that all of these key interventions are provided in Wales. Many children in Wales already travel long hours for treatment, it is an even greater burden on a family already in trauma to travel further than necessary. The Children's' unit at UHW should have all the funding to provide every aspect of care for children and young people in South Wales. This provision has been provided in South Wales for 20 years and it is important to maintain the service in Wales. There are sufficient children in South Wales to maintain clinical skills. To travel to Bristol for this treatment, especially haemodialysis, places intolerable burdens on families Standard 7. Medicines for CKD and ERF An electronic patient record will help ensure that all health professionals caring for the child across two centres have access to up to date information on the patient's medication. The Key Interventions in Point 1 (a-g) and Point 2 (a-t) are fully supported Standard 8. Transport Many children have to travel from rural areas to UHW, Cardiff and Bristol. Those in North and Mid Wales travel to centres in England. All should be done to help families with these extra costs. Whilst the key interventions will guide families on to how to minimise these costs, the WKPA feel that central funding should be given to those families that do not receive any benefit to cover these costs.

6 Standard 9. Care and Support for those who choose not to dialyse to stop treatment or who are terminally ill. The NSF recognises that it is rare for children to need conservative management (without RRT) and subsequent palliative care. The WKPA supports all the recommendations and Key Interventions listed. Standard 10. Transition to Adult Life and to Adult Renal Services. The WKPA feels that the transition to adult care would be better facilitated if all aspects of paediatric nephrology, including transplantation, were carried out at the same unit that provides the adult service. This was the case in South Wales when, prior to 2002, paediatric renal transplantation was provided at UHW. The Key Interventions are fully supported

7 Module 2. Prevention of Chronic Kidney Disease The WKPA fully endorse the standards to prevent the incidence of CKD or to delay its progress. End Stage Renal failure is a chronic life long illness that has a devastating effect on patients and families. Any measures taken to prevent or alleviate the complications that can occur with ESRF are welcome. Standard 2.Prevention of Renal Disease The early detection of renal impairment would prevent many patients in "at risk" groups from progressing to ESRF. It is hoped that funding will be given to GPs to carry out the key interventions listed in the Renal NSF Standard 3. Detection of Renal Disease The key interventions listed will discover patients who need to be referred to a specialist nephrology unit. Whilst this will prevent patients "crash-landing" on units, without extra dialysis capacity and adequate staffing levels, the renal units will not be able to cope with the extra workload. Extra investment in further satellite units and expansions of existing units will be necessary to provide treatment for this group of previously unrecognised patients. Standard 4. Delavin2 pr02ression and minimisin2 complications of impaired renal function The WKPA endorses the key interventions in this standard. To delay progression and minimise complications will give renal patients a better quality of life and better long-term outcomes. It is essential that all renal patients, wherever they live in Wales, should be referred to a consultant nephrologist in a timely manner. This does not always occur as indicated on pages 90-91 of the document. Standards 5-6. Recognition, Prevention and Treatment of Acute Renal Failure The WKPA fully supports the standards and hopes that the clinical networks to be established will ensure that patients with suspected ARF in DGHs without a nephrology presence are treated quickly to prevent long-term damage to their renal function. The WKPA hope that lessons have been learned from the recent e-coli outbreak that saw all of the children affected treated in English hospitals. We hope that the standards in this module and Standard 3 in the Children's module will ensure that this does not occur in the future.

8 Module 3. Effective Delivery of Dialysis The introduction to module 3 recognises that "the development of a patient-centred approach to RRT requires not only careful preparation and planning for both the patient and the multidisciplinary renal team; but also requires the development of a strategic plan to anticipate resources and the capital required to deliver these services". To achieve the aims in Module 3 the implementation group needs to speed up the investment programme for increased dialysis capacity throughout Wales as soon as possible. Standard 7. Preparation for Renal Replacement Therapy To achieve this standard, extra renal trained staff of all categories is needed. It is recognised that renal failure has a profound psychological and social effect on the patients. There is an acute shortage of renal social workers and renal clinical psychologists in Wales. Page 107, the rationale stresses the need for early referral and access to a MDRT, which should include all the categories of staff listed on Page 1 of this response under Standard 1 - Care for All. This standard cannot be achieved with the current staffing level. Additional funding will be needed for extra staff of all categories that will then have the "time" to assess patients' individual requirements and needs. Standard 8. Vascular and Peritoneal Access Sun!erv. Currently, this standard is not being met with well-documented adverse outcomes for patients. Patients in the UK do not have timely vascular access surgery. Most patients wait 3 months for surgery; the waiting time in other European countries is less than one month. Renal units do not have sufficient allocated theatre time to meet this standard. Adequate dedicated theatre time must be allocated in all renal units that provide access surgery. Good access is essential for a patient's long time survival. A catheter inserted in a central vein,e.g. neck, shoulder or arm, is prone to infection, thus increasing risk of access-related death by two to three times.( Page 109 of the document).it is essential that standard 8 is implemented as soon as possible as mentioned in Section 5 (b) Standard 9. Peritoneal Dialysis CAPD and APD will be the first choice of many patients. However, the lack of haemodialysis capacity should not influence the process of "patient choice". The key interventions are welcomed. Adequate staffing levels will be needed to ensure these are implemented. Key Intervention 1. It is the WKPA's view that "counselling" should be given by a clinical renal psychologist and would like "counselling by a renal clinical psychologist" listed in this key intervention. Standard 10. Haemodialysis Currently this standard is not being met. Patients often have too little dialysis, dialyse at inappropriate times, and, in cases of hospital admission, are often out bedded. Patients have very little "choice" on where and when they dialyse. Patients should be able to dialyse in a "homely" environment which is designed to be "patient friendly" Patients have to dialyse too far away from home in overcrowded units which are often understaffed.

9 Key Intervention 1. An early start needs to be made to ensure that capacity meets demand. Haemodialysis capacity needs a significant lead time within the planning programme. The WKPA has witnessed the delay to the planned new dialysis unit at Carmarthen NHS Trust due to the lack of forward planning. Renal patients at Carmarthen have to dialyse in an appalling facility due to constant delays in the commissioning process. The WKPA views the to-year rolling plan as too long a period. Until funding for expansion is brought forward this standard will not be met. Key Intervention 2. The WKPA welcomes the key interventions mentioned, and hopes that facilities and staff numbers will improve to implement these standards. The WKPA would like to make the following amendments to the key interventions: Key Intervention 2(b) to read "High flux dialysis and/or haemodiafiltration (HDF) should be given as an alternative" Key Intervention 2 (e) The WKPA wish it to be noted that, in addition to this extra capacity to allow visiting patients to be treated, funding should be allowed for haemodialysis patients in Wales to receive treatment worldwide. Currently these patients receive funding only if they travel to E.U. countries, Switzerland and Australia. Key Intervention 2 (g) should read as Key Intervention 1 of Standard 9 i.e. "All patients undergoing dialysis will have access to services through a specialised MDRT with the full range of staff with appropriate training and experience, based in renal units with appropriate facilities and support services including social services, counselling by a renal clinical psychologist, pharmacy and dietetics expertise." Key Intervention 3. All patients who choose home haemodialysis should have appropriate back up care to avoid feelings of isolation. Patients on home haemodialysis should have the same access to the MDRT as those patients on hospital haemodialysis. Extra care should be taken by the MDRT to ensure that home haemodialysis patients concerns are recognised and dealt with effectively and efficiently. Special attention should be given to these patients who are so few in number but who take on full responsibility for their treatment. This brings with it even more stress and trauma to a "normal" family environment. Patients on home haemodialysis are by nature independent and do not always convey their concerns and worries to the appropriate staff member. Key Intervention 4. There are many instances of dialysis patients being out bedded or bedded along side transplant patients with a risk of cross infection. It is essential that adequate renal inpatient beds are provided together with the appropriate staffing levels. Key Interventions 5-6. Currently, the provision of dedicated nephrology and transplantation beds is totally inadequate. Renal patients are frequently out-bedded into wards where there is no renal trained staff. Together with the risk of crossinfection for transplant patients, the current situation puts renal patients at clinical risk. The WKPA trusts that these key interventions are implemented as soon as possible

10 Standard 11. Transport The WKPA views this as a very important standard. Patients have long travelling time to and from their units, three times a week. The transport system is woefully inefficient and unsuitable for the needs of haemodialysis patients. This is particularly evident in rural areas across Wales where there are many patients who travel longer than the 30 minutes recommended in this standard. Key Interventions 1-2 are fully supported by the WKPA Key Intervention 3. The costs of parking at hospitals are unfair for haemodialysis patients and, it is known that one NHS Trust in Wales pays a mere 6p a mile to patients providing their own transport. More incentives for patients to use their own transport would release resources to provide better hospital transport. Equally, if there were satellite units closer to patients home, the need for a hospital transport service would be reduced. Each renal unit should be allocated a dedicated transport budget to be able to organise its own individual transport arrangements.

11 Module 4. Organ Donation and Transplantation Every patient who is likely to benefit from a renal transplant should be given the best possible chance of receiving one and have access to a high quality transplant service. The WKPA has been campaigning for a new renal transplant unit at UHW since 2000, and has fully supported the OBC put forward by Cardiff and Vale NHS Trust. The WKPA remains disappointed that capital and extra revenue funding for this unit has still not been allocated by WAG, HCW and Cardiff and Vale NHS Trust. The OBC for the new unit has passed between SHSCW (now HCW), and Cardiff and Vale NHS Trust many times. The complete lack of any progress on this issue cannot adequately be explained by either HCW or Cardiff and Vale NHS Trust. It is the opinion of the WKPA that the current unit is endanger of being "swallowed up" in the proposed merger of transplant units in England. Standard 12. Organ Donation The WKPA fully supports the key interventions in this standard. In addition, the WKPA feel that the Welsh Assembly Government should introduce an advertising programme on television to promote organ donor awareness This standard, when implemented, will hopefully result in more organs for transplant operations. Health Commission Wales has "capped" funding on the number of transplant operations at UHW to 90. The WKPA will campaign vigorously for this "capping" to be removed. The number of transplant operations performed should be governed by the number of organs available and not by finance. The WKPA is not aware of "capping" the funding of transplant operations in any other unit in the UK. Standard 13. Transplantation. The WKPA fully supports the key interventions in this standard. However the WKPA has grave concerns that the facility at UHW has the capability to implement all of the key interventions. In particular: Key Intervention 6. The current theatre time allocated for both cadaver and living donor operations at UHW is not adequate. This standard states, "national facilities should ensure that cold ischaemic time should not exceed the limit of 24 hours." A retrospective audit of transplants at UHW for 2003/4 showed that 18 cadaver transplants out of 71 had cold ischaemic time ranging from 20-33.12 hours. Four of these had a cold storage time of greater than 30 hours. Cold storage time is the major variable. which determines early function and early loss but which can be controlled. The British Transplant Society document "Towards Standards for Organ and Tissue Transplantation in the UK" (2003) recommends that kidney cold storage time should be kept below 24 hours wherever possible. It quotes: "Connolly et al have reported that prolonged cold ischaemia is associated with reduced five -year graft survival. The report of Cecka et ai, and unpublished data from UK Transplant database and Eurotransplant databases, also support the association of lengthy cold ischaemia time with inferior graft survival"

12 Key Intervention 9. Transplant patients are frequently out bedded. This adds to the risk of cross infection in patients who are already immunosuppressed. This is a cause of great concern to transplant patients who could loose their grafts through cross infection. The MDRT should have all the renal trained categories of staff necessary to provide excellent post operative care. Unless the OBC for the new transplant unit at UHW is approved this key intervention will not be achievable. The WKPA would like to draw attention to the NICE guidelines issued in February 2006 for "Improving Outcomes for people with skin tumours including melanoma" The guidelines have special reference to groups at higher risk of skin cancer. Transplant patients fall under this category. The guidelines recommend that: "Transplant patients who have precancerous skin lesions or who have developed a skin cancer should be seen in a dedicated "transplant skin clinic" either in the transplant centre or in a hospital closer to the patient's home, according to the choice of the patient. Close links should be established between the transplant centre, local physician and dermatologist for the management of transplant patients postoperatively. Dermatologists managing transplant recipients with multiple and/or recurrent skin cancers need to liase with the transplant team regarding reduction of immunosuppression and the use of systemic retinoids in order to reduce the risk of invasive disease" Currently, not all transplant patients receive adequate post operative care for skin problems. The WKPA wish that these guidelines be incorporated in the postoperative care of transplant patients.

13 Module 5. Alternative models of care The WKPA welcomes the standards in this module and trusts that early implementation of these standards will ease the trauma and stress of both patients and family members during these periods when difficult decisions have to be made. Standard 14 Choosing Not to Dialyse This standard is fully supported. Sufficient trained staff will be essential to implement these Key Interventions Standard 15 Conservative Management of Established Renal Disease This standard is fully supported. Access to palliative care whilst still receiving care from the renal multidisciplinary team is welcomed. However, regarding key intervention 2 (b) iv, it is to be noted that there is currently only one renal clinical psychologist based at UHW. This is insufficient to achieve this aim. Standard 16-17. Withdrawal of Dialysis and Care in the Last Days of Life The WKPA fully supports these standards. The NSF recognises that it is not currently possible for these aims to be achieved due to lack of trained staff and lack of adequate facilities. Renal patients have witnessed such short failings and it has been distressing. ESRF is a life long illness and patients live for many years. Consequently, they meet each other and become close friends. This is the same for the staff caring for the patients. Both patients and staff identify closely with their unit and each other. Every effort should be made to implement these standards so that every patient has the appropriate care in the last days of life. This will ensure that all renal patients have the confidence that they will be cared for in a dignified way at the end of life either in hospital, at home or at a place of their own choosing.

14 CONCLUSION The Renal NSF for Wales is recognised by the WKPA to be an important landmark for the future care of its members. It is hoped that the next 10 years will see the implementation of all the standards in the NSF. Many of these will be relatively simple to implement. However, the WKPA recognises that there are standards that will take substantial investment by HCW through the Welsh Assembly Government to implement. There has been growing pressure on all dialysis units in Wales for several years. The lack of haemodialysis capacity has contributed to an inefficient and inadequate service for patients. The measures in Module 2 will hopefully prevent many people with CKD from either having ESRF or delaying its onset. However, it is accepted that the problem of renal failure will not go away. The expected rise in ESRF will happen and, unless there is substantial investment in additional haemodialysis capacity, patients will not have the level of care that they should have. In some cases, patients will die as a result. The WKPA feels that the 10-year rolling plan will not address the problem of dialysis capacity with sufficient urgency. We feel that this plan should be accelerated and completed in a much shorter timescale. The WKPA feels it is imperative that the WAG and HCW provide the capital funding and extra revenue costs to proceed with the OBC for the new Renal Transplant Unit at UHW. This will ensure that all patients who are offered a transplant will be able to receive one. It is essential that Wales retains and improves its renal transplant provision. Not to do so, will be a failure by the Welsh Assembly Government. The WKPA welcomes the publication of the renal NSF. However it is a disappointment that the document does not recommend the extra funding that is needed to: a) increase haemodialysis capacity across Wales, especially in rural areas and, b) funding for the new renal transplant unit at UHW. We welcome the opportunity to liase and work with the commissioners and providers to implement these standards. Patient representation on the Renal Advisory Group is essential, and we hope to be able to provide at least two members on the group from both South and North Wales. We realise that the implementation of the NSF will be a challenge for the NHS in Wales, but we are optimistic that every effort will be made to provide "world class" care for renal patients. The provision of renal services has long been a "Cinderella" service, taking second place to heart and cancer services. The publication of the Renal NSF in Wales will ensure a better understanding of renal illness in primary, secondary and tertiary care. It is hoped that this awareness will lead to the recognition that, for renal patients to receive clinically excellent care that will prolong and improve their lives, the standards in this document will need extra resources. Only then will renal patients in Wales receive treatment that is "world class".

15 APPENDIX A: RESULTS OF WKPA MEMBERS' AWARENESS SURVEY - MAY 2006 1. Category of respondent Votes Cast Percentage Transplant Patient 74 36% Home Haemodialysis 11 5% Hospital Haemodialysis 64 32% CAPD 17 8% APD 4 2% Pre-dialysis 2 1% Carer 18 9% Health Professional 12 6% Other 1 1% 2. Age and Gender Male aged 0-18 2 1% Male aged 19-40 8 4% Male aged 41-60 43 21% Male aged 61 and over 61 30% Female aged 0-18 0 0% Female aged 19-40 10 5% Female aged 41-60 40 20% Female aged 61 and over 39 19% 3. Area of Residence N.W. Wales 36 18% N.E. Wales 23 11% Mid Wales 7 3% S.E. Wales 52 26% S.W.Wales 84 41% Outside Wales 1 1% 4. Knowledge of NSF Standards None 76 37% Little Knowledge 73 36% Fairly Conversant 42 21% Very Conversant 12 6% 5. Were the Standards well-publicised? Yes 46 23% No 92 45 Don t Know 64 32%

16 Votes Cast Percentage 6. How do you think the "standards" will affect you? A little 79 38% A lot 96 48% Not at all 26 13% 7. Do you think the "standards" will improve facilities? No 11 5% Maybe 72 35% Yes-considerably 33 16% Yes-If finances are available 83 41% Don't know 4 2% 8. Do you think the "standards" will require extra funding from the Assembly through HCW to implement. No 0 0% Yes- a large investment 147 72% Yes- a small investment 15 7% Don't know 41 21% 9. If funding is required and not forthcoming, will renal services in Wales - Remain the same 39 19% Deteriorate 112 55% Improve 14 7% Don t know 38 19% 10. Did you attend either of the Launches? Yes 22 11% No 107 53% Did not know about launch 66 33% Unable to attend, distance too far 8 4%

17 COMMENTS RECEIVED FROM INDIVIDUAL PATIENTS / CARERS / PROFESSIONALS TRANSPLANT PATIENT FROM S.E. WALES "I wish you every success with this launch and hope that the Assembly will help with the extra funding - they should, and it would be shameful if they did not" TRANSPLANT PATIENT FROM S.W.WALES "Haverfordwest HD patients need a unit in Haverfordwest" TRANSPLANT PATIENT FROM S.E. WALES "A new renal unit was promised when we moved to UHW. It was a supposed facility that outreach beds were not needed on other wards" CARER FROM MID WALES "As a carer of two transplant patients (husband and son) I think funding is vital" CAPD PATIENT FROM S.E. WALES "Very concerned about the "cap" of 85 funding for renal transplants" TRANSPLANT PATIENT FROM S.E. WALES "Improvements have been made but better funding is needed" TRANSPLANT PATIENT FROM S.W. WALES "I haven't heard about this issue at clinic or anywhere else until this questionnaire and magazine issue" APD PATIENT FROM S.E. WALES "Transport concerns me. If haemodialysis needed, transport arrangements not clear. Information from staff varies considerably. We need facilities at our local hospital. Holding clinics there would reduce congestion at UHW clinic" CAPD PATIENT FROM S.W. WALES "My application for an Allowance turned down 5 years ago. Should this be?" CAPD PATIENT FROM S.W. WALES "All aspects of renal care could do better if only there was more money put into it. Waiting times for Doppler scans and to get on the transplant list can be very distressing. Also having appointments cancelled" HOSPITAL HAEMODIALYSIS PATIENT FROM S.E. WALES "Health and Education are the nation's priorities. At the moment insufficient attention and funding are being provided" HOSPITAL HAEMODIALYIS PATIENT FROM S.W. WALES "I have been offered a kidney by my brother who lives in the Caribbean. Funding has been refused by W.A.G"

18 TRANSPLANT PATIENT FROM S.E. WALES "Standards are easy to provide as a list. Implementing them is more difficult, especially as standards 12 and 13 are already not going to be fully addressed if there is capping of 85. How tragic is a situation where someone is ready ( desperate) to have a transplant, there is one available but that would be the 86 t h, 90 th, or 120 th this year?" HOSPITAL HAEMODIALYSIS PATIENT FROM S.W. WALES "All staff at renal are doing a wonderful job" TRANSPLANT PATIENT FROM S.E. WALES "I am satisfied with the standards at the moment, and I think that the doctors and nurses do a wonderful job" TRANSPLANT PATIENT FROM MID WALES "Received transplant 12 years ago at Royal Infirmary. Had a stroke 5 years ago and disable, always persevering. Paid for a walking frame which gets me a short distance to village. My tests are at out patient at Shrewsbury Royal hospital. I wish I could have a better quality of health" HOSPITAL HAEMODIALYSIS PATIENT FROM S.W.WALES "We need dialysis in Pembrokeshire Withybush Hospital" TRANSPLANT PATIENT FROM N.E. WALES "The standards are good but with extra money can only improve these standards to ascertain the ultimate" HEAL TH PROFESSIONAL "We need resources and an all Wales cooperation to achieve improvement" HOSPITAL HAEMODIALYSIS PATIENT FROMN.W. WALES "In desperate need of funding" HOSPITAL HAEMODIALYSIS PATIENT FROM N.W.WALES "No one has spoken of standards to me. We are only patients, we don't get invited to launch of standards or any such like" HOSPITAL HAEMODIALYSIS PATIENT FROM N.W.WALES "Have not seen a book or leaflet regarding the standards" TRANSPLANT PATIENT AND CARER FROM N.E.WALES "Have a total lack of understanding/knowledge of the standards" HOSITAL HAEMODIALYSIS PATIENT FROM N.W.WALES "What are "Standards"?" HOSPITAL HAEMODIALYSIS PATIENT FROM N.W.WALES "Unable to answer some of the questions because do not know the recommendations"

19 LIST OF ABBREVIATIONS USED IN THIS RESPONSE APD AUTOMATED PERITIONEAL DIALYSIS ARF CKD CAPD DGH ESRF GP LHB MDRT NHS NSF NICE OBC RRT SHSCW UHW WAG WKPA ACUTE RENAL FAILURE CHRONIC KIDNEY DISEASE CONTINUOUS AMBULATORY PERITONEAL DIALYSIS DISTRICT GENERAL HOSPITAL END STAGE RENAL FAILURE GENERAL PRACTITIONER LOCAL HEALTH BOARD MULTIDISCIPLINARY RENAL TEAM NATIONAL HEALTH SERVICE NATIONAL SERVICE FRAMEWORK NATIONAL INSTITUTE FOR CLINICAL EXCELLENCE OUTLINE BUSINESS CASE RENAL REPLACEMENT THERAPY SPECIALISED HEALTH SERVICE COMMISSION WALES UNIVERSITY HOSPITAL OF WALES WELSH ASSEMBLY GOVERNMENT WELSH KIDNEY PATIENTS ASSOCIATION