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Your
NKF - does it do what you want?
Please note, this page is a summary of the full conference speech (click here for the full transcript).
Tim Statham OBE
Chief Executive of the NKF
The National Kidney Federation is the only UK national charity that is actually run by the patients for the patients.
The NKF only had two very specific roles. The first was a duty to campaign for improvements to renal services in the United Kingdom. The second role was to provide patient support services.
When the NKF wanted to enlist MPs to support renal services about four years ago, this was where the structure of the NKF was so useful. The KPAs got 108 of their MPs to sign the early day motion to form the All Party Parliamentary Kidney Group in the House of Commons.
It had made the most enormous amount of difference, because renal patients were a small group of patients of only about 33,000 at the moment. KPAs fed questions to the MPs and the profile of renal services was much greater.
"We like to think that we have a good dialogue with the Department of Health," said Mr Statham.
"There is, largely speaking, quite an open door to the NKF and that's because they know that we're patients."
In the first six months of this year, the number of transplants had fallen by 13 per cent. When the BMA set up the Transplant Partnership, the NKF became a member. The Transplant Partnership had been arguing for a new Act of Parliament and it looked as though there was going to be one.
The document 'Towards the National Service Framework' was one of the NKF's greatest successes. The Government had set its face against having a renal National Service Framework. So rather than accept that situation, the NKF together with the Renal Association had formed a new group called the Kidney Alliance, who set about writing a National Service Framework for dialysis themselves.
They launched it in the House of Commons to the ministers. And that was enough, because five weeks later the Government folded on the issue and announced a National Service Framework.
"And I think for any lobbying group to achieve a change in Government policy is a huge success," said Mr Statham.
"For a group of patients to achieve it is a remarkable success."
The NKF had already provided more than 200 patients to give evidence to the NSF, and four patients were serving on the Expert Reference Group.
On patient support services, the first thing that was set up about four years ago was the Helpline with Jane Oldfield as Helpline manager. She took about 110 calls a week of every description.
Also the website, like the NKF, was created by patients, and it was maintained and run by patients. It was more than 500 pages long, and it had been seen by more than 100,000 patients.
"It's one of the reasons why all of the renal industry companies want to know the NKF, because they know that we are communicating all of the time with the patients," said Mr Statham.
And there was Kidney Life, which was easy to read and informative.
When the Helpline got a call from a patient for a leaflet, the Worksop office downloaded the information into a blank leaflet, folded it up, put it into the post and out it went. And it was the same with multiple leaflets.
Robert Dunn, the advocacy officer, worked on behalf of individual patients and KPAs who were running into difficulties. But Bob also had a more central role in representing the NKF's case on a whole range of areas, both in commissioning, on the National Service Framework, with the Department of Health, and with the Government. And of course there was the annual conference which was quite a big undertaking for the Worksop staff.
Plans for the future: Sara Tyler was setting up a national Young People's Group to help young renal patients. It was a group in two halves, from birth to 18 years and 18 to 40.
"We think Sara is onto a winner, and the NKF Executive is doing everything it can to support Sara," said Mr Statham.
The NKF was trying to work with other kidney charities and also was facing up to the ethnic challenge - a serious problem. Members of the Afro-Caribbean and Asian groups had a problem with diabetes leading on to renal failures, and the NKF was finding it difficult to engage with them. The NKF also felt is must try to find a way forward to help those KPAs who were struggling. There was also the monitoring of the renal NSF; to make sure it was not a damp squib. The NKF was a member of CEAPIR, the European renal group.
The NKF could not ignore the 100,000 people with some form of kidney disease but have not reached end stage.
"We have to find a way of finding these patients, whether they be diabetics, whether they be hypertensive, and stop them becoming our patients," said Mr Statham.
"And of course next year the NKF celebrates it 25th anniversary".
Please note, this page is a summary of the full conference speech (click here for the full transcript).
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