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A meeting between the All Party Parliamentary Kidney Group (APKG) and Dr Peter Doyle, Senior Medical Officer, Health Services Directorate, Department of Health, 12th July 2000
1) The Government has demonstrated its commitment to improving renal services by a number of initiatives it has taken in the last few years. In particular, the Government has recognised the need to improve services providing renal replacement therapy (RRT) throughout the NHS.
2) Ministers have considered very carefully the question of an National Service Framework for renal services. There are already two further NSFs in preparation, one on services for the elderly and the next on diabetes. Even if work started now on an NSF for renal services, it would be at least three years before it could be produced and there are many other services competing for the next NSF. Such a delay would be unacceptable and renal services, unlike many others, already has in place most of the underpinning evidence and service standards that an NSF is designed to produce, i.e.
As a result, service commissioners already have, or will have very soon, all the elements normally found in an NSF and essential for informed commissioning. In more detail:-
Health care needs assessment - An updated version of the renal chapter of Health Care Needs Assessment is due to be available on website in August.
Renal survey - The 3rd survey will be available this summer. It will give information on aspects such as incidence, modality of treatment, co-morbidity, age and ethnicity of patients etc, all of which are valuable for healthcare commissioners.
Health technology assessment - The Department commissioned an HTA on the effectiveness and efficiency of methods of dialysis which was published in 1998.
Renal standards - The Department supported the development of the Renal Association/Royal College of Physicians standards document. The second edition was published in 1997 and the third edition should be published next year.
Audit - Renal Registry - The Department funded the Renal Registry, an audit system, which is being rolled out to all renal units in England - will end need for surveys within 4 years.
3) Commissioning - One of the most important decisions was to make services for RRT a priority for commissioning by RSCGs from April 1999. In addition to the Renal Purchasing guidelines issued by the NHS Executive in 1996, RSCGs have had information about all the above material. They will soon be getting very comprehensive audit data on the effectiveness of the services they are commissioning which will ensure they keep up with demand. Overall, commissioning RRT services via RSCGs:
4) Ministers also recognise that the best form of RRT is renal transplantation. They have taken on board the issues raised in the RCS Report, looked at experience from abroad and, in an important announcement last February, set in train a number of important initiatives to try to procure more organs for transplantation, particularly kidneys.
5) Financial resources - In addition to making information available to try to ensure that health service commissioners dedicate a proper share of their resources to RRT services, there have been some important central announcements:
It was claimed that as there are double the number of patients wanting an organ transplant, why was the Government still against an opt out system for organ donation?
In response, Dr Doyle stated that this has never been ruled out and the Government keeps an open mind. However, regular surveys showed that only 25% of the population were in favour of an opt out scheme and the system could not be changed without public approval. One of the reasons why opt out is less important is that, because of the threat of HIV and other infections, a full medical history has to be taken. If during questioning relatives object, organs are not retrieved whatever the legal position for fear of adverse publicity. The only convincing evidence of an effective system showed rates could be improved through having designated staff in hospitals to ascertain the wishes of dying patients.
The Chairman said that the BMA had produced a paper on this and he would arrange for a copy to be circulated to the NKF. He reported that a recent ten minute rule bill by Nick Palmer calling for the establishment of a national register of people who had not given their consent to transplant their organs after death, and for laid down procedures to be followed before an organ transplant took place, had received good support from MPs. Furthermore, in Scotland, newspaper surveys indicated large support and it looked as if the Scottish Executive would press ahead with an opt out measure.
In response to a question about whether the improvements to transplant organisation will allow it to meet demand in the future, Dr Doyle said that hospitals can only try to identify every potential donor. A rate of live donation of 10 per pmp should be achievable; currently the figure is between 1 and 2% but growing. For heart beating donors, a rate of 13 per pmp is now being achieved, but is higher in some units and it might be possible to double the rate.
To get to a steady state position for meeting haemodialysis need could take take 20 years at the current rate of transplantation. Other countries have been more successful. Northern Italy has recently seen a large increase in transplantations through better organisation. Spain is the most successful with a ten year sustained increase in transplant rates to get to the current position where renal transplant waiting lists are now falling and dialysis provision has reached steady state. Portugal and Scandinavian countries are at the stage where waiting lists are no longer growing.
One of the major issues in this country is the rate of renal failure in ethnic minority communities, some of which have a rate 4 to 8 times higher than the norm.
Pressed as to why this should be, Dr Doyle explained that Asians, women in particular, have a much higher rate of diabetes which can lead to renal failure whilst Afro-Caribbeans tend to have a higher incidence of hypertension. There is a large population bulge in 40 to 50 year olds who are reaching the age when such diseases become a problem.
Dr Doyle appealed for assistance with ideas for communicating the message to the Afro-Caribbean community and for identifying key people who could advise the Department. Any suggestions should be sent to Dr Doyle at the Department of Health, 322 Wellington House, 133-155 Waterloo Road, London SE1 8UG, Tel: 020 7972 4838 or e-mail: Peter.Doyle@doh.gsi.gov.uk
Dr Doyle added that it was hoped to put in place an audit to monitor the donation rates in all hospitals.
Questioned about ensuring that all units have a duty to reach a set standard of care, Dr Doyle indicated that all RSCGs will have to ensure that care is commissioned to national standards and this will be monitored through the Renal Registry which was already producing valuable data from about a third of units.
The point was made that there needs to be a higher focus for increasing access for HD for those not on the transplant list.
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