UK National Kidney FederationDate: 2 December 1999
Re: NKF meets Lord Hunt - Summary
Lord Hunt, Peter Doyle and others Dept of Health
Austin Donohoe , Tim Statham NKF
Opened meeting – welcomed those present – invited Austin Donohoe to state case.
Explained that there were many issues but that he wished to refer only to three:-
Austin Donohoe asked what had happened to the working party report from the Royal College of Surgeons and said that there was a need for a National Transplantation Service upon which patients should be asked to serve. He said Waiting Lists were up and the Number of Transplants down, a continuing trend. He informed Lord Hunt of the change of NKF policy in respect of Opting Out but said that the NKF did not intend to pursue this issue at this time, preferring to focus on transplantation organisation. Austin Donohoe asked for research into the issue, particularly an evaluation of statistical evidence into OPT IN/OUT from other countries so that debate would be informed – if the framework made no difference this should be demonstrated.
Organ retrieval rates were falling and were geographically dissimilar – 41 pmp in Newcastle/Bristol, as low as 19pmp elsewhere – no focus on best practice.
The organisation of transplantation in the UK was he said a mess and Transplant co-ordinators were a large part of the problem having no central guidance or standards. Co-ordinators should be employed, managed & accountable to a National Transplant Service.
Lord Hunt replied that the Government was not inactive and accepted many of the points, he accepted that over-all performance had to improve. He said that in a few weeks he would publish a comprehensive review package of measures that would deal with the responsibilities of UKTSSA who he felt should oversee co-ordinators.
Austin Donohoe did not agree that UKTSSA was a suitable body, he wanted a new service to subsume UKTSSA, with a figure head who took responsibility and patient involvement. There needs to be a change towards greater accountability.
Peter Doyle said there was a nearly unanimous view amongst European Countries that neither OPT IN / or OUT makes any difference. Spain appears to achieve a better result because of local organisation.
Lord Hunt said that he would invite the NKF to further discussions before publishing his review package.
Austin Donohoe said the Kidney Alliance was producing a shadow National Service Framework for renal matters which he hoped the Government would use. The document would deal with Needs Assessment, Quality Standards, and the whole commissioning process involved in Renal Replacemnet Therapy. He asked when we would see the long awaited Commissioning Guidance on Renal Services. Peter Doyle said that information on Needs assessment and on Quality standards was awaited.
Austin Donohoe offered to show his shadow document to Lord Hunt before it was published in April/May and expressed the hope that the two sets of documents could be compared.
Austin Donohoe said that it did not make sense that commissioning groups had no budget and that those involved must take ownership for the work. Health Authorities without Renal Units did not understand the issues. Austin Donohoe then showed a list of 20 towns larger than 100,000 population that did not have renal units. The list was not exhaustive.
Peter Doyle remarked that there must be proper needs assessment undertaken and said that it was the lead purchaser who held the budget. Lord Hunt expressed a wish that commissioning should work. He said that dialogue between expert reference group and the NKF was welcomed. Peter Doyle intends to attend a meeting of the all party renal group of M.P’s. Austin Donohoe said that he thought the All party group would work closely with the shadow framework.
Austin Donohoe said the system was failing, in crisis and getting worse. He presented four letters supporting this view from Doctors. Doctors tell of patients turned away, of no choice of modality, of inappropriate modality, sub-optimal treatment, excessive death rates. He proposed that Access rates should be 120pmp and he said that doctors could now produce people who were dying because of the crisis in lack of provision. Lord Hunt said he shared the concern and was intending to improve things step by step – not overnight. Lord Hunt said that there was no extra funding available, but the over all increase in NHS spending would encompass improvements.
When Austin Donohoe asked what sanction could be taken against a Health Authority that failed to provide adequate provision, Lord Hunt said it was a matter that had to be dealt with from the centre. Peter Doyle repeated that there had to be proper needs assessment and an improvement in the commissioning process. Austin Donohoe said that there was no sanction against poor commissioning plans. Peter Doyle said that monitoring was very difficult. Austin Donohoe asked whether renal care remained part of the Governments priorities list and whether places that suffered commissioning failures would be reviewed.
Lord Hunt said that there had been no change in the Governments priorities and that the Health service had been through the internal market system and it would take time to recover from that – the first step was to create tools that would enable the Government to make judgements.
Austin Donohoe said that he wished to co-operate with the Government but that he could not rule out a publicity campaign that contrasted the cost of saving one life on the railway (£17 million) with one life by dialysis £20,000. Austin Donohoe asked for an assurance that there will be moves to improve the situation early in the new year (2,000)
Peter Doyle said that transplant issues were to be dealt with first.
Note:- Lord Hunt said that he would invite the NKF to further discussions before publishing his review package. The NKF made a request for this meeting (3 December 1999) but without a date being offered. The Government then announced it's review of the modernisation of Transplant services on 22nd February 2000. The NKF has now made a further request for a meeting.
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