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The largest kidney patient charity in the UK. Run by kidney patients, for kidney patients.

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Trustees Present: Mrs. M. Higgins Chairman
  Mr K Modi Vice Chairman
  Mr D MacDonald Treasurer
  Mr M Abbott Secretary
  Mr Frank Howarth NKF President
  William Bradbury SAKA
  Richard Cooke Bristol KPA
  John Keenan North East KPA
  Sandy Lines MBE United Norwich KPA
  Barbara Morris Lancs & South Cumbria KPA
  Robert Price Six Counties KPA
  Tracey Sinclair Wessex KPA
  Michael Walker Lincolnshire KPA
In attendance: Mr T Statham Chief Executive
  Ms M Parkin Office Manager
  Mr N Pankhurst Assistant Office Manager
  Mr Robert Dunn National Advocacy Officer
  Mrs S Edwards Accounts Supervisor
  Ms Deborah Duval Kidney Life Editor

Plus 23 Official voting delegates (as per register) and 17 non-voting delegates as per the Attendance Registers (attached)

A quorum of 30% of official representatives was met.


Apologies were received from Joanne Watts, Nottingham & Notts KPA: Vivienne Dodds, Walsgrave KPA; Gareth Davies, Welsh KPA; Andrew Cook, Dudley KPA, Rosemary & Ray Barlow, Hull KPA; David Wilson, Northamptonshire KPA; Val Neary, Gloucestershire KPA; John Powell, SAKA; Simon Lloyd, Tyneside KPA; St George’s KPA and York KPA.


Amendments to be made to the minutes: 550 Chairman’s Half Yearly Report £1,000,000,000 had been incorrectly registered and should have read £100,000.

It was proposed by Dick Cooke Bristol KPA, seconded by Sandra Lines United Norwich KPA and agreed unanimously that the minutes of the meeting held on 28th March 2008 be approved and signed by the Chairman as a correct record.


There were no matters arising.

559 NKF Conference (Roadshow) 2010/11 Venue & Programme

Marion Higgins informed the meeting of a recent decision by the Executive to change the name of the Conference to that of Roadshow. It was felt the event needed to have a more dynamic approach. Barbara Morris Conference Chairman reported Roadshow would be held 8 - 10th October 2010. The event would be more participative, interesting and more appealing to attendees. The morning activities would be similar to that of previous years and subjects covered would include transplantation, dialysis and home therapies. The “Roadshow” events would include cookery demonstration, podiatry and an introduction to buttonhole technique. Sunday Council meeting and workshops would run consecutively so enabling everyone to attend all. Friday evening reception which had proved popular would again be open to all.

Jean Aplin Exeter and District KPA stated the cost of the conference was prohibitive to KPA’s supporting members. Travel costs had increased and transport was not easily available for the Sunday return journey. She suggested NKF should look at a one day event in London with a weekend event once every three years. Barbara Morris stressed the hotel facilities had to be paid for whether the conference ran on a daily basis or overnight. Peter Spray Royal London Hospital KPA felt a day conference may not be any cheaper particularly in London and travel costs would still be incurred, he personally felt the conference was too short. Denise Abbott Gloucestershire KPA stated the conference was good and worthwhile, a chance to see how other people are getting on and find out what is new in the renal world. Timothy Statham NKF Chief Executive pointed out that of the many conferences he had attended in London in the last two years none had carried a fee less than £270 for the day, whereas NKF conference costing much the same, was a two day event. Dick Cooke Bristol KPA stated NKF, would by use of a questionnaire distributed through Kidney Life, be asking what people wanted from the NKF Roadshow.

560 World Kidney Day

The main event which had been held at the House of Commons had been extremely successful. Bob Dunn stated many Ministers had attended. Commissioning had been discussed. There had been speakers from Labour, Conservative and Liberal parties. Celebrity chefs Lawrence Keogh and James Martin had provided the food for the day. Marion Higgins asked all KPA’s who had held events to send photographs to Deborah Duval (Kidney Life Editor). Several had already been received.

561 Advocacy

Bob Dunn announced 2010 had seen the 10th Anniversary of the Advocacy Service, which began on 21st February 2000. He presented a report on what had been achieved during that time covering items of statistics which included the total number of meetings (5,000) which had been attended and a list of the many submissions Advocacy had made including NICE immunosuppresants, CKD, PD, Carcinetrics and renal carcinoma to name but a few. The Advocacy team had over its 10 year existence worked tirelessly to improve the kidney patient experience whether it related to medications, benefits, transport, specialised commissioning, end of life care, dialysis away from base, home haemodialysis organ donation and much more. He thanked Dennis Crane for his dedication to his area and also to Denis Cawdron who was now a valued member of the team. He thanked the Helpline for their support and assistance. Marion Higgins stated whilst Bob is well supported by his team it should also be noted the amount of personal time Bob gave to the role.

562 Proposition received from Exeter and District Kidney Patients Association

That the National Kidney Federation actively pursue the goal of obtaining a minimum of one full-time dedicated renal social worker per main renal unit in the Country.

Jean Aplin on behalf of Exeter and District KPA asked the meeting to consider the proposition and asked for support in achieving its goal. She stated the KPA had funded the social worker for two years for one day per week. An approach had been made to the District County Council for funding but they had stated funds were not available. A written statement was needed which could be provided to the Council stating this role was a necessity. Sharman Maxwell Hammersmith Hospital KPA stated the hospital funded renal social worker and counsellors worked in conjunction with each other and attended KPA meetings. Barbara Morris Lancs and South Cumbria KPA stated the main unit has two social workers, but the satellite units do not have the same access. The social workers were funded by the County Council. Roy Bradbury SAKA said one social worker had approached SAKA for funding which had been agreed on the understanding that six months later it would be reviewed. They had then approached the British Kidney Patients Association for funding and the unit now had three social workers who attend the KPA meetings. Bob Dunn reported 39% of patients have access to a social worker. The difference the social worker can make is tremendous in relation to benefits etc. Recommendations made in 1998 have still not been met in 2010. Some of the problem is down to culture. Lister hospital have the one social worker who is degree qualified in the renal sector. Timothy Statham suggested a NKF policy of “The National Kidney Federation believes that all kidney patients should have access to a dedicated renal social worker paid for by the National Health Service (NHS) or other NHS approved body.” If approved this would be displayed on NKF website and used as the NKF official position for press interest.

It was proposed by Dick Cooke Bristol KPA, seconded by Judith Sidaway Dudley KPA and agreed unanimously to adopt the proposed policy statement highlighted above.

Judith Sidaway reported the West Midlands team have an audit of all renal units during September and December. The NSF part one states links with Local Authorities in jointly planning care are essential as renal patients may often require access to local social workers and benefits support, but very few units meet the requirement.

563 Proposition received from Addenbrookes Kidney Patient Association

Welsh soft-opt-out organ donation scheme

Addenbrookes KPA committee welcomed the news in December of progress with the soft-opt-out organ donation scheme in Wales. Concern was expressed about how the scheme might operate across internal UK borders. Will Welsh kidneys and English kidneys remain in their own side of the border?

That the NKF offer to seek clarification on how NHS Blood and Transplant plan to manage this?

Timothy Statham pointed out that it is not a Welsh Government in Wales, and the scheme would need the approval of the House of Commons. As it now stands, there is not a majority for this, and in all probability would therefore be defeated. A new Government may change that. There is a long way to go. It should be referred to as Opt Out, not presumed consent. Bob Dunn said the current UKT system would not allow it to happen. Bob Price Six Counties KPA pointed out the Welsh had managed to abolish prescription charges, therefore there is no reason why this would not happen. Dick Cooke Bristol KPA stated the benefit from live donation increasingly improved. If this was adopted throughout the country, the process of paired and pooled transplantation would be more difficult. He suggested returning to the subject if this was passed. Alan Craig Addenbrookes KPA stated it was not referred to as Opt Out and there are riders attached to it in the Welsh Scheme.

564 Open Forum

Kirit Modi introduced himself as a transplanted patient and raised a query on the use of Kidney Care plans, stating not many were in use throughout the country. He had taken his own copy to his Consultant who had not seen it previously but who had agreed to pilot it with him. Having gone through the plan a draft was developed. Anything which appeared abnormal could then be talked about. Discussion had included the main risks in the next five years and what could be done to help oneself. The plan was to be written up and reviewed in six months. Items which had come out of the meeting included:

  1. Do not use estimated GFR for transplanted patients
  2. Protein/creatine ratio should be routine for patients
  3. Understand the risks
  4. Review every six months gives more control of one’s own situation.

He stated he had found the experience enlightening and asked for other people’s experiences.

Clare Ratcliffe North Staffs KPA stated their area had been using the plans for the last two years and GFR was included.

Dick Cooke Bristol KPA stated the hospital he attended had not welcomed the plan. He felt national feedback would be helpful. Kirit Modi to pen an article for Kidney Life. Bob Dunn commented there was a great deal of opposition to the plans. Kidney Care (NHS) are keen for the plans to be used widely. Denise Abbott Gloucestershire KPA stated it would appear everyone should have them, but Gloucester do not they use a daily flow sheet. Ray Mackey North East KPA reported he had been a member of the Kidney Care team who had developed the plan. This had then been issued as a pilot scheme. This had since gone national. Judith Sidaway Dudley KPA felt the Kidney Care plan needed to be promoted from the top down and not expect patients to drive it forward. These should have been taken on board by Consultants in the first instance.

Tim Statham stated the Department of Health (DH) had asked NKF to distribute to members nationally which had been done. DH takes the view to pressure trusts would not achieve anything. Pressure from patients’ results in trusts knowing the DH want it now. Bob Dunn stated it is not an impossible task. Comparing it to Know your numbers cards which was not welcomed by units initially, but pressure from patients resulted in units doing as they are asked. Bob Price Six Counties KPA suggested if Renal Patient View was working and up to date this would provide the information. Marion Higgins Northamptonshire KPA pointed out that not all patients have access to a computer. Deborah Duval Kidney Life Editor stated the purpose of the Kidney Care plan is for the patient to know what is right for them so they become their own centre of excellence. Dick Cooke Bristol KPA reported in America patients are expected to take responsibility for their own health care. In the UK we accept what the Consultant says. Nephrologists are concerned when patients take more interest.

Mick Hill Charing Cross KPA gave a personal thank you and from Charing Cross KPA to the NKF for the political activity, advocacy and helpline. Everything done is for the benefit of the patients. Appreciation for the copy of Kidney Life was expressed.

There being no further business the meeting closed at 3.30 pm.