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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 F Howarth President
  Mrs S Lines United Norwich KPA
  Mrs B Morris Lancs & South Cumbria KPA
  Mr J Keenan North East KPA
  Mr M Walker Lincolnshire KPA
  Mr E Maclean Scottish Kidney Federation
In attendance: Mr T Statham Chief Executive
  Ms M Parkin Office Manager
  Mr Robert Dunn National Advocacy Officer
  Mr D Cawdron Regional Advocacy Officer
  Mrs S Allen Office Administrator
  Ms Deborah Duval Kidney Life Editor

Plus 24 Official voting delegates (as per register) and 26 non-voting delegates as per the Attendance Registers (attached)

A quorum of 30% of official representatives was met.

Marion Higgins welcomed everyone to the meeting. She hoped everyone had enjoyed the weekend. It had been delightful to see so many KPA’s in attendance and thanked everyone for bringing so many delegates to the event in particular Royal Free and Addenbrookes. It was hoped that everyone would take the message back to their units and encourage others to attend next year.


Apologies were received from Jean Aplin, Exeter and District KPA, Alan Sutton Doncaster & District KPA, John Powell SAKA and Dick Cooke Bristol KPA.


It was proposed by Simon Lloyd Tyneside KPA, seconded by Sandra Lines United Norwich KPA and agreed unanimously that the minutes of the meeting held on 27th March 2010 be approved and signed by the Chairman as a correct record.


There were no matters arising.

568 Chairman’s Half Yearly Report

The report had been issued prior to the meeting. The Chairman commented on the following items.

  • Dialysis - The NKF had established a new working committee CHOICE. All KPA’s had received a questionnaire from Baxter Healthcare. It is very important this is completed and returned to KPA Chairman to ensure patients are given the choice of dialysis they prefer.
  • Transplantation – Tim Statham had given a speech at the Human Tissue Authority meeting. The Department of Health are now moving forward with suggestions that organs should be retrieved from Accident and Emergency units.
  • World Kidney Day (WKD) – Lots of material on the WKD website. It is hoped as many KPA’s as possible will take part in raising awareness.
  • Kidney Life – Deborah Duval Kidney Life editor provides an excellent service and is always eager to receive your articles. Personal stories make it more interesting to the reader.

569 Financial Statements

The accounts issued prior to the meeting relate to the period up to and including 31st August 2010. These interim accounts show a healthy overall situation especially in view of the extremely difficult financial phase being experienced by the UK and other global markets. **Please note all figures are rounded.

Balance Sheet As can be seen the balance sheet shows Total Assets less liabilities of £1,745,430.

Fixed Assets - of £1,482,020 include the NKF Headquarters (property) office equipment etc together with the investments held in Scottish Widows, Anglo Irish Bank and Abbey Investment Bond.

Current Assets - show stock items, debtors, cash and the NKF current bank account which in total are £270,899.

Current Liabilities include NKF creditors and accruals returning a total of £27,0445.

Year to Date - Income for the year to date has accrued £498,941. It should be borne in mind that this figure includes £46,391 for Roadshow receipts, including sponsorship which should not be taken as general income to the charity but viewed as deferred income which will be paid to the Roadshow venue. Likewise the annual draw which will have prize costs set against it in the near future. The Abbey Bond has since this report matured and will be reported upon later.

Fundraising Costs relate mainly to the NKF Lottery and purchase of saleable item such as Christmas Cards.

Charitable Expenses Accruing a year to date figure of £152,229, includes items such as Kidney Life, Helpline, Advocacy and other conferences and meetings such as BRS. Kidney Life has recently received an industry grant for £20,000 which has been ring fenced for the production of the magazine providing welcome relief over the next issues.

Support & Management - This section covers all administration of the charity and shows a year to date figure of £155,633.

Net Income to the charity for the period under review is £184,323

Final Statement - As the charity enters the third quarter of 2010 it remains ever watchful of the financial situation.

The holding within the Abbey Bond of £550,000 having reached maturity has now been returned together with interest of £16780. This needs to be reinvested wisely and with caution but also with some degree of speed. Investment opportunities within the third sector are few and far between and are being sought by many. NKF will be mindful of the risks involved when seeking a new investment source, whilst at the same time securing the best possible interest.

In reply to question raised on the safety of the deposit within the Irish Bank and the current Irish currency problems, it was explained the investment remained under the amount invested remained below the figure guaranteed by the Irish Government.

It was proposed by Ray Mackey North East KPA, seconded by Jim Higgins Northampton KPA and carried a majority vote of 22 that the Treasurers report be accepted. There were two abstentions recorded.

570 Proposition received from Tyneside KPA

“In 2011 DAFB (Dialysis Away From Base) sessions will have a mandatory tariff of £144/session. This may not include extra charges for medication, tests, administration and other costs. We ask the NKF to pursue a policy to set standard tariffs for these additional costs.”

We are putting forward this motion because the Newcastle renal unit has had to pay out very considerably more for DAFB than has come in and this has had a knock on effect in limiting that number of DAFB sessions each patient can have per year to a maximum of 6. Charges vary from NHS unit to another. One unit has charged £380 per session. While making the charge of £144/session should help reduce the problem we ask that a more positive approach is taken.

Simon Lloyd Tyneside KPA clarified the proposition by stating it was the extra costs of dialysis which he wished the NKF to pursue. These had affected the unit adversely. There had been no restriction on the number of sessions available. Fifty patients were now registering to take dialysis away from base. The range of costs charged by the dialysis units vary tremendously and are onerous. We ask the NKF to see if these costs can be standardised. One such cost being transport.

Bob Dunn NKF stated he sympathised totally with the comments of Simon Lloyd. The range of charges being made in dialysis units varied drastically for instance Newcastle was currently charging £195 whereas a new satellite unit due to open shortly in the south will be charging £340 for what is essentially the same service. This has nothing to do with patients. It is the NHS finance system which needs to be overhauled. Payment by results (PBR) will come in throughout the country with effect of 2012 and will carry a mandatory charge of £144. However, PBR only costs out dialysis in four different forms. Home Haemodialysis will probably be priced in the same way. APD had not been included. NKF is pursuing the problem with the Department of Health (DH). DH is running a new initiative between October and December and will decide after that what effect the extra costs will have on PBR. Many things have yet to be finalised. PBR is not all bad and it is improving certain areas such as East Sussex where patients have been allowed to increase holiday dialysis from two to four weeks.

Jim Rae Kings KPA asked if the £144 price would also apply to private companies.

Bob Dunn NKF explained dialysis is under a NHS contract and the standard contract price will be £144. The next session being run from October to December is when finer details will be decided upon. There is a great deal of concern around the subject. Private companies work under an NHS contract and the price is agreed with the NHS. Once a new system is agreed contracts will need to a renegotiated. There are many items outside the contract and we simply do not have all the answers yet. Renal funding is the main concern.

Jim Rae Kings KPA stated concern has developed over the new contract affecting the private companies. If they do not get the return they are looking for will they sell the space to people outside the UK?

Bob Dunn NKF explained new regulations were being introduced relating to people coming into the UK. It has been highlighted in the report. It is now moving towards the report being published. It is a very complex situation with peripherals being changed. The costing side remains critical. One price which will not alienate the private sector must be sought. Ultimately, it will solve a lot of problems if you can go anywhere to dialysis and be charged the same price.

Simon Lloyd Tyneside KPA reiterated it is the extra costs he seeks NKF to pursue.

It was proposed by Simon Lloyd Tyneside KPA, seconded by Alan Bond Tyneside KPA and agreed unanimously that NKF seek a policy to set a standard tariff for additional costs.

571 Open Forum

Simon Lloyd Tyneside KPA Asked if Care Plans could become more encompassing to include diabetes, eye care etc.

Kirit Modi NKF referred to the discussion on Care Plans which had taken place at the last Council meeting. Whilst it is right to consider all aspects of health care and not just focus on kidneys, we need to look at this holistically. He explained he had written an article for Kidney Life (KL) on his own experience. When talking to the nephrologist you need to express what you want to talk about. Many patients are now beginning to use the Care Plan more flexibly.

Deborah Duval Kidney Life Editor stated everyone has an opportunity to raise a question of Donal ’Donoghue, National Clinical Director for Kidney Care and suggested putting his query into written format and asking Donal to address it.

Simon Lloyd Tyneside KPA stated sometimes as patients points you wish you had raised at the time do not come into your mind until later and the opportunity is missed.

Ray Mackey North East KPA Asked if there was anything KPA’s could do to push forward the ideas within Tim Statham’s presentation to the Human Tissue Authority into the public domain.

Timothy Statham NKF There is the potential for getting rid of the waiting list for transplantation within three years. It is a totally new concept. Currently, organs are only taken from intensive care (IC) units, but there are organs from donors available with the accident and emergency departments (A&E) all around the country sufficient in number to get rid of the waiting list. This is extremely important. From the work of the NKF and now the DH through Chris Rudge Transplant Tsar all are working towards this goal. On 4th October Chris Rudge had his first meeting with the Clinical Directors of A&E to see how this can be put into place. If A&E will work with it then it can be achieved. The main worry is the changes we are facing with the NHS. The Tsar may disappear very quickly. It is vital that the KPA’s ensure MP’s, Commissioners, Nephrologists etc accept that this change is expected. Of the 400 people who die in the UK each day 396 of the organs are buried or cremated instead of being used.

Deborah Duval Kidney Life Editor stated she could contact Chris Rudge to write an article on the time scale of the operation.

Kirit Modi NKF stated KPA’s had been asked for some time for the names of the Transplant Champions. NKF has now ascertained this list which can be distributed so that you have the name for your hospital. That person is responsible for increasing the number of donations. Secondly KPA’s must raise awareness. Write to your local media. The theory of the waiting list being due to insufficient organs is not true and this message must be spread.

Timothy Statham NKF pointed out that damage must not be done to the Donor Register, the message must relate to using the additional organs from A&E.

Barry Westley Northamptonshire KPA asked if a donor’s relatives object will the organs be used?

Timothy Statham NKF stated the law states it is the wishes of the donor that should be paramount. In practice no surgeon would take the organs if the relatives object. It is still a question which would be asked in A&E. Everyone who signs up to the donor register should discuss their wishes with their relatives.

Simon Lloyd Tyneside KPA stated there was already a programme in place in Newcastle retrieving organs from A&E but there is only around one hour to put everything in place. It is very difficult to achieve. It is not just about signing the donor register but about having a relative’s signature in advance.

Timothy Statham NKF a donor card is not seen as the way forward. Signing direct by computer means once your name is on the computer it can be seen immediately. It provides the impetus to find the relative quickly. It would not be practical to have the relative sign at the same time as the donor.

Ms A McQuilkin York KPA explained York Hospital has a very busy A&E department but it is 45 minutes away from the nearest transplant unit. Would that eliminate those people?

Timothy Statham NKF National Advocacy Officer Bob Dunn had been instrumental in the setting up of the Organ Donation Task Force (ODTF). The subsequent report suggested National Retrieval teams would need to be created. Experience of these teams is limited but the concept is there.

Ray Mackey North East KPA A similar scheme of relatives signing up to the register alongside the donor had been set up in Dublin six years ago. It had been suggested to DH and support for the idea was good. The scheme is working well in Dublin.

Jim Rae Kings KPA It is an interesting situation posed for A&E explaining the legalities of dying on the register. If the relative cannot be found what can the surgeon do?

Timothy Statham NKF Perhaps Chris Rudge should look into the legal difficulties and find a solution.

Bob Dunn NKF one of the processes for the ODTF was to look at the legalities and ethics. Careful investigation is necessary and it is one of the items still being looked into and reassessed. 40% of people are still saying no. The background work on this is huge.

Deborah Duval Kidney Life Editor stated donors in IC families are allowed a transition period before the organ is taken. It is not as clinical as perhaps thought.

Barry Westley Northamptonshire KPA stated his son had now had two transplants. The first came from Belgium. If people there can achieve it then surely it can be achieved in the UK.

Louis Toussaint Royal Free Hospital KPA Asked if a choice of menu could be arranged for Saturday Gala Dinner at the Roadshow. Many of his group did not eat red meat and had not selected vegetarian.

argaret Parkin explained that the cost implication would render this impossible, but his comments would be noted.

Marion Higgins NKF asked everyone to complete the questionnaire so that everyone’s comments could be analysed. She thanked Margaret and team for a tremendous job.

Bob Dunn National Advocacy Officer had been asked several times what he had received in his parcel. The gift from the NKF for his impending retirement had been a decanter and glasses with which both he and his wife were extremely pleased. He thanked everyone for their support.

Marion Higgins NKF asked if everyone present would favour a return to Blackpool in 2011 which was agreed. She hoped it would be as well attended as 2010 and that everyone would encourage delegates from their KPA to come.

Deborah Duval Kidney Life Editor felt the Hinckley Island had proved to be a very successful location to everyone who travelled from every corner of the UK.

Alan Newey Six Counties KPA stated the meal for the Gala Dinner had been presented extremely well. Everything was tasty. Everything had been good.

There being no further business the meeting closed at 10.20 am.