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Conference 2002 - Council Meeting
Sunday 27 October 2002

Chairman, Gordon Nicholas, reported that the number of industry partners of the NKF had continued to increase, and further contacts were being pursued and looked promising.

"Whilst their support must be earned, and not taken for granted, this expansion to our fund-raising base has provided much needed stability," said Gordon.

He was giving the Chairman's report to the NKF Council Meeting. He mentioned the NKF Website, the Helpline and the work of the NKF Advocacy officer, which were all inter-related.

Other points from Gordon's speech were:

• The NICE report on home versus hospital dialysis contained everything that the NKF had put into its submission.
  
  "For myself, I am pleased that the role of the carer has now been recognised," said Gordon.

• The All Party Parliamentary Kidney Group was becoming more focused with a provisional programme to include cash for kidneys and the shortage of organs. The NKF had been asked to supply questions that the Group could ask in the House of Commons. Any questions should be sent to the Workshop office, who would pass them on.

• The Kidney Alliance document on specialised commissioning had been given full support by the NKF Executive.

• Gordon thanked everyone who had contributed to the National Service Framework discussions. The volunteer patients database had continued to grow.

• A plan to give more support to KPAs through an NKF agents scheme would start with a pilot employing just one person in one part of the country who would offer advice, advocacy and support to any KPAs who needed it. If successful, it would be expanded to the rest of the country.

• A transplant patient, Mr Rod Whiteman, had started work on one day a week as a grant seeker. The Young Person's Group, under chairman Sara Tyler, had been officially launched.

• The Friends of Lincolnshire Kidney Patients had moved from associate to full membership and Glan Clwyd KPA had become NKF members. Kidney Cancer UK had become an associate member.

In the Council Meeting a proposal by Tyneside KPA that detailed information should be given to transplant patients on all forms of skin cancer that they should watch out for and that each transplant patient should have an annual overall skin check was carried unanimously.

A decision whether to oppose the transfer of acute paediatric renal in-patient care and transplantation from the University Wales in Cardiff to Bristol Children's Hospital was deferred until the Welsh KPA could obtain further information. It was agreed unanimously that the NKF support the general philosophy of trying to keep transplant units open which are under threat of closure.

Open Forum:

Max Bacon said that all KPAs should work together to help the NKF have a more effective voice. He said that KPAs should lobby locally to make sure funding from the NHS went where it was needed and guidance was needed from the NKF as to where to apply pressure.

Simon Lloyd urged people to get appointed to the NHS user groups and patient forums. Mick Hill said that the Primary Care Trust patient forums would be the most effective as they would deal with complaints.

Chris Roberts asked if a database could be set up nationally for holiday dialysis which also included units which provided isolation facilities for hepatitis positive patients. Bob Dunn explained that most units did not have isolation facilities. Patients with hepatitis were not being refused dialysis but there were a lot of issues on holiday dialysis where patients were being prevented from taking holidays at all. The main reason was that holiday dialysis was a local discretionary policy. The NKF was monitoring the situation and trying to work towards achieving a national policy.

Katherine Wright said a patient had suggested that patients who were hard of hearing should urge the hospital to produce a simple sticker on their file to alert staff to the fact.

Ted Laughton (Six Counties KPA) urged all KPAs to follow their example of meeting with the management, renal director and staff every six months to discuss renal issues. Ray Bradbury (SAKA) said they had similar meetings in Sheffield, but it was up to the KPAs to make the first approach.

Ray Morris (Wordsley) asked the NKF to review travel insurance companies listed on the web as some were now refusing cover. The chairman asked patients who discovered problems to notify the Helpline to make them aware of the difficulties.

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