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Specialised Services

WKPA RESPONSE



 

  
 
   

ANNEX D - CONSULTATION RESPONSE FORM
Consultation Document on Proposals for the future of Specialised and Tertiary Services

Deadline for responses: 19th June 2009
It would be very helpful if you could use this profoma to respond to the consultation.

Name....Gareth Davies Chair

Organisation:                 Welsh Kidney Patients Association.......................................................................................

Address: Lakeside Offices, UHW, Heath Park, Cardiff CF14...4XW.....................................................

E-Mail address:.....................................................................................

The Welsh Assembly Government intends to publish the responses to this document in full on its website. Normally, the name and address of its author are published along with the response, as this gives credibility to the consultation exercise. If you do not wish to be identified as the author of your response, please state this expressly in writing to us.

Please comment as fully as possible.
Please return completed proforma to:
Name: Health Reform Programme Office
Address: Department for Health and Social Services
Welsh Assembly Government
Cathays Park
Cardiff
CF10 3NQ

Electronic versions may be returned to:
DHSSStrategy@wales.gsi.gov.uk
Thank you for taking the time to consider these proposed amendments, and for responding to the consultation.
Consultation Questions

1. Do you agree overall with the proposals contained in this Consultation Paper?

No

The WKPA is dismayed that it is proposed to separate the different renal replacement therapy treatments for end stage renal failure. Adult renal transplantation and paediatric nephrology have been retained as specialised services whilst end stage renal dialysis and acute renal dialysis are to be commissioned at a local level. The WKPA is of the opinion that this will be detrimental to the overall care plan and pathway for patients with end stage renal failure. Further the Renal Network groups are of the same view

2. Do you agree with the retention of a national All-Wales approach to the planning and securing of certain specialised and tertiary services?

Yes.

It is important that specialised services are planned on an all Wales approach to avoid inequality of access to specialised care. E.g. until February, some LHBs in Wales were approving funding for Sutent for Kidney cancer whilst others were not. This “piecemeal” approach to provision of services is not appropriate and unacceptable to patients. Central funding for all Renal Replacement Therapies is essential to maintain equality for all patients

3. Do you agree with the proposal for a single funding mechanism for services across the full patient pathway?

Yes.

But this must b be the case for all patients with end stage renal failure. Dialysis and transplantation are both renal replacement therapies and as such should be commissioned under a single funding mechanism. This will not be the case under the current proposal. Dialysis will be funded locally and transplantation nationally. Yet renal patients will pass from one therapy to the other a few times during their lifetime and possibly be subject to unacceptable delays in treatment whilst funding is being secured. They must have the same single funding mechanism at National level.

4. How should accountability mechanisms be constructed, so as to ensure clarity for the public and patients?

The WKPA is pleased that it has patient representation on the renal networks and welcomes the opportunity to have a say in patient care and services. WKPA representatives have also attended the expert patient training workshop organised by the BHF with Assembly approval. WKPA representatives have attended the vascular access group meetings. These initiatives encourage patients to have a say in the provision of their care and facilities. The Assembly should continue to use the media and hold meetings locally whenever possible and particularly when a major change in services is planned. Community Health Councils are unique to Wales and it is pleasing to learn that the Assembly recognise the role CHCs have in Wales.The CHCs must be adequately financed so that publicity and information is prominent and widespread.

5. Do you have any comments on the Schedule of Services to be transferred to LHBs - Annex A?

The WKPA is dismayed that the provision of dialysis for end stage renal failure has been transferred to LHBs. This is a backward step. When dialysis was commissioned locally it led to an inequitable distribution of dialysis capacity throughout Wales. Since dialysis became a specialised service, commissioned firstly by SHSCW and then HCW, provision has improved and new units have been commissioned on a fairer basis. The NSF has led to the setting up of the Renal Advisory Board and the North and South Renal Networks. WKPA representatives have been involved in every step of these new bodies. Progress has been made on planning where new dialysis capacity is most needed. Plans are being made on renovating existing units which are out dated and badly in need of improvement. The two networks currently liaise with HCW and the new Renal Strategy Forum on future planning of dialysis capacity. It is acknowledge that there will be a year on year increase in the demand for dialysis and that further expansion will be needed in the future. End Stage Renal Dialysis is a low volume, high cost treatment and even with the increase in renal failure, it will remain this way. As such it satisfies the criteria to remain a designated specialised service.
Dialysis patients are assessed whether they are able to go on the transplant waiting list either at local nephrology clinics or at transplant units. Prospective living donor transplant are seen locally and at transplant centres. The clinical renal psychologist based at UHW undertakes counselling and guidance for prospective living donors. Blood and other tests for prospective living donor/recipients may be taken locally or nationally depending on circumstances. Stable transplant patients have out patient appointments at local nephrology units.
End stage renal failure is life long and patients will move between therapies during the course of their illness. It makes common sense that all RRTs are designated as specialised.
The renal networks and the Renal Strategy Forum also liaise with HCW on the provision of transplants and are actively monitoring the progress of the new transplant unit at UHW. Under the new proposal to move dialysis to local level, the renal networks and Strategy Forum would need to liaise with the seven LHBs AND the WHSSC. There is the potential for confusion in these new proposals. Central funding is the only way to ensure the current flexibility and cooperation across the Renal Community

6. Do you have any comments on the Schedule of Services to be retained at a National level - Annex B?

The WKPA is pleased that renal transplantation has retained its specialised services. However, for the reasons listed in question five, it feels that the commissioning for all renal replacement therapies should be retained at National level. The WKPA is pleased that paediatric nephrology is also retained at National level; however, it is unclear that paediatric renal transplantation has not been specifically mentioned in the list. N.B other paediatric transplantation services have been specifically listed. The WKPA trusts that paediatric renal transplantation remains a designated service at National level. To add further to the need to retain dialysis at National level, transition to adult services is a crucial time for young people and it is difficult to provide a seam free transition under any circumstances. However, the WKPA feels that this is another strong reason for keeping all forms of renal replacement therapy under National level.

7. Do you support the proposal for a Joint Committee?

 

Yes

8. Do you have any views on the proposal for Cwm Taf LHB to host the Joint Committee?

No

9. Do you have any comments on the Criteria for Assessment of Specialised and Tertiary Services?  

The WKPA notes the following statement from Annex C as criteria for planning a service nationally

“The number of new cases per annum and the prevalence i.e. the total number of patients with the condition in the population will give an indicative marker of whether a specialist service should be provided at local, regional, national or UK level. In addition the trends and estimated future trends in incidence and prevalence are important. Larger numbers of patients would indicate locally or regionally planned services. Small numbers would indicate a critical mass of patients is needed to plan the service at a national, UK or international level, in exceptional circumstances, to maintain clinical competence and thus ensure the best outcomes for patients. If a planning population of one million or more is needed to plan a service it is likely that national coordination will be necessary to secure critical mass for the safe and cost effective provision of the service.”

The numbers of patients needing dialysis is predicted to grow year on year by 7%. Even so these numbers are small in comparison to heart, cancer numbers. Dialysis patients are, and will continue to be low volume, high cost. As such the WKPA is of the strong view that the proposal to transfer end stage renal dialysis to local level does not reflect the rational in the above statement in these proposals.
Under these circumstances we request that the provision of end stage renal dialysis remains a specialised tertiary service and is retained at National level for commissioning services

10. Is there anything else you would like to comment on?

The WKPA notes the omission of Organ Procurement and Dialysis Away from home from Annex A and B. These provisions are now under the remit of HCW. As such the WKPA feels that both these services should be retained at a National Level.
The Welsh Kidney Patients Association is an independent Association run by patients and carers. It has 2,200 members in Wales. The comments in this response have been confined to the renal issues that concern the care and facilities of our members