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

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Annual Report of the Executive Committee 2008-2009

Annual Report of the Executive Committee 2008-2009 (incorporating elements from the 2008 Half yearly report)

Real Progress — saving the lives of Kidney Patients

The National Kidney Federation has made huge organisational strides during the twelve months summarised here, however, much more importantly, the progress the Federation has made with regard to Transplantation in the UK is significantly more important — it is progress that will save many lives. This report will detail the main features of all this progress, both organisational, and with regard to the services our patient members can expect to receive in the fields of CKD, Dialysis and Transplantation.

Transplantation

The Organ Donation Taskforce was set up by the Government because the NKF forced the issue via the All Party Parliamentary Kidney Group(APPKG), the Transplant Summit, and the Transplant Manifesto. The resulting Taskforce report, published in January 2008 was magnificent. It promised major improvements in Transplantation organisation and an increase in Transplant numbers of 50% within 5 years. The report was immediately embraced by Ministers and came as a fully funded set of proposals. Now we are seeing the implementation of that far reaching report under the watchful eye of an NKF friend — Chris Rudge who has been appointed as Transplant Tzar, alongside Donal O’Donoghue who is the Kidney Care Tzar. The Taskforce (upon which Robert Dunn — NKF Advocacy Officer serves) stayed in being a little longer and was given the task of considering “Presumed Consent”. That report is now also published, but does not favour a change at this time to the system or Organ Donation in the UK.

World Kidney Day (WKD)

In 2008 the KPA’s organised events all around the country to alert the public to “Kidney issues”. The events took the form of balloon launches and have been regarded as a great success. This year the NKF have decided to supply KPA’s with a series of posters as opposed to Balloons, enabling KPA’s to have much more freedom in the activities they arrange for 12th March 2009. The posters deal with Chronic Kidney Disease (the WKD theme) and started appearing throughout the UK following Christmas. The range of “Imagine” posters are eye catching and punchy. The NKF is very hopeful that they will raise public awareness and lead to a very successful 2009 WKD. This report hopes that by the time of the NKF AGM the KPA’s will have had another great success on their hands.

Dialysis Manifesto

Following a Dialysis Summit hosted by the APPKG (similar to the Transplant Summit) the NKF published a Dialysis Manifesto calling for ten key actions to improve the service. The document was launched at the NKF October 2008 Conference and at a meeting of the APPKG held in the Parliamentary Estate on 29th October 2008. Press interest was high, as was the notice being taken of the document by the Department of Health and by Health Minister Anne Keen MP. The NKF is now waiting for the Governments reaction to the ten key actions called for — we want the same positive response as we received for the Transplant Manifesto — our fingers are crossed. We are quiet certain that we need greater dialysis capacity within the UK, more patient choice, and a more efficient and timely service providing access surgery. We are also in great need of the service being properly audited against the Renal National Service Framework - Standards and Markers.

Policy

In July the Executive Committee agreed 28 new and revised policy statements key to NKF activity and belief. These policy statements can be read on the NKF website at http://www.kidney.org.uk/about-us/policy/

The MOVE

In April the NKF moved to its new Headquarters at “The Point” Worksop. The move went well and without undue disruption — indeed the helpline was never off line to callers throughout the entire transition. The old Headquarters was sold shortly afterwards. Our thanks must go to the staff who handled this upheaval magnificently. We now have a building fit for purpose, in fact it is more than that, it is ideal for our needs and we believe will remain so for many years to come.

The Database

It is essential that the NKF has a fit for purpose computer database accessible by all Worksop staff. The decision to change to a new one was taken some years ago, but has only just come on stream. The Executive Committee is pleased to report that although a very complex matter, the new database is now proving to be all we hoped for and we expect great benefits in the future. Coupled with the move to a new database is a move to a new Sage Accounting package. Whilst this is only just going live we can already see that it will enable many enhanced services including the ability for the NKF to receive payments by credit card should members wish to do this for goods and services ordered.

Industry Partners

2008 was a difficult year for our Industry Partners and this has reflected in reduced sponsorship levels from them to us, however they remain immensely helpful to the NKF in endless ways and for that we are very grateful. We are also pleased to report that we now have 22 Industry partners that include the following new additions during 2008:- B.Braun Avitum, Bristol Myers Squibb, Sanofi Aventis, Diaverum, Hospira, Ortho Biotech, and Sandoz.

The November 2008 meeting with the Industry Partners was virtually “standing room only”!

All Party Parliamentary Kidney Group (APPKG )

The NKF is pleased to report that Richard Benyon MP has become Vice Chairman of the group in support of the current three chairmen, Evan Harris MP, Janet Dean MP, Lee Scott MP. He shares his new role with Lord Davies of Coity. An officers meeting at the start of 2009 plans to set the agenda for the year.

NKF Conferences

The Conference committee, under the chairmanship of Barbara Morris, arranged a superb programme for the 2008 event — it is just such a shame that the hotel (Chesford Grange) was less than perfect. In fact the NKF has resolved not to return to that venue and is actively searching for a new hotel for the 2010 Conference. In 2009 (this year) the NKF returns to Blackpool on 9th, 10th and 11th October. The NKF hope that by then Conference bookings will be able to be made using Credit Card payment for those that wish to.

Personnel

Bindu Chauhan and Gordon Nicholas were co-opted to the Executive Committee, however subsequently Gordon Nicholas retired, as did Judy Dear we thank them all for their service.

Jenny Bartlam (Office manager until the end of 2007) was given a rousing send off when she was taken by the Executive committee to Roasts Restaurant in Covent Garden (restaurant owned by Lawrence Keogh — Transplanted Kidney patient) We thank Jenny for everything she did during her years with us. Margaret Parkin has taken on this role and we wish her well. Margaret’s first year has been very successful.

Stephanie Allen commenced the part time role of Assistant office Manager during the year and looks to be settling well to her duties.

Susan Frade has taken over the voluntary role of Young Persons Group (YPG) Chairman. We hope she can bring this group back from its current dormant state. The Executive Committee will give her every encouragement.

We are pleased to report that Robert Dunn, NKF, National Advocacy Officer received the MBE in the New Years Honours List for services to health — well done Bob — richly deserved.

The Executive Committee has resolved to employ a Fundraising officer and the search is now on to locate a suitable candidate for the role. The NKF is looking for an employee on salary, not a person working on a commission basis, however considerable flexibility is also on offer to the right person.

Kidney Life, Posters and Car Stickers

The NKF magazine, Kidney Life goes from strength to strength in the very capable hands of its editor Deborah Duval and is now 24 pages large. Because of lack of space, a decision has been taken to reproduce a summary only of the annual Conferences as opposed to the usual 4 page verbatim report. This has become possible because all the Conference speeches can now be heard again at any time on the NKF website — www.kidney.org.uk During the year the Executive Committee made available for the first time NKF Car Stickers and NKF posters which it is hoped will raise the NKF’s profile. Do please display them at every opportunity.

Finally

On the 24th December 2008, a new Survey zone was launched on the NKF website. Called “Tell the NKF”, this zone now enables Kidney Patients to convey their views directly to the NKF using a whole range of ever changing online surveys. The incoming filled in online surveys are automatically totalled and analysed thus enabling the NKF to know and understand what patients feel about the issues immediately. This is an amazing democratic tool that was commissioned and built by the NKF for the NKF. We believe it is the first of its kind and gives the NKF the moral authority to tackle every issue knowing that it is truly representing kidney patients needs and desires. Please use this tool — the more survey forms you fill in on line the more accurately we can reflect your views and needs. They do not take a moment — just go to www.kidney.org.uk — then click on “Tell the NKF”

On behalf of the Executive Committee, I commend this report to you.

Ray Mackey
Chairman
31st December 2008