UK National Kidney FederationAt the Annual General Meeting in March the following Executive Officers were elected: -
Chairmen: Michael Hill and Gary Lloyd, Vice Chairmen: Ray Mackay and Ian Cundell, Treasurer: David Griffen, Secretary: Ken Tupling.
Mr Frank Howarth was elected as President
The NKF Council, at an Extraordinary General Meeting held in Keresley, Coventry on Sunday 3rd October 2004, passed a resolution instructing the Executive Committee of the NKF to take the steps necessary to change the charity into an incorporated body. The Council felt this was a prudent way by which trustees might receive better personal protection from consequences that may result from their voluntary work for the Federation.
As a result, and acting on the advice of the Federation's solicitors Russell-Cooke, 2 Putney Hill, Putney, London, SW15 6AB, an application was made to form a new company. This company, known as “National Kidney Federation”, a company limited by guarantee, holds company number 5272349 and is a separate entity from the already existing charity also known as National Kidney Federation. On the 15th November 2004, the Federation office in Worksop received a letter from the Charity Commission dated 12th November 2004, informing it that the new company had been entered into the Central Register of Charities and had been granted the Charity number 1106735.
It is now the intention of the National Kidney Federation to transfer all assets, staff, and liabilities from the old Charity (no. 278616) to the new charity (no. 1106735) and then when this work is complete, and having first given due notice to the Council of the date when it will become effective, to dissolve the old charity (no. 278616).
During the interim period both charities called National Kidney Federation remain valid and registered – they are the same organisation. The memorandum and articles of association of the new charitable company are as similar as possible to the constitution of the old charity.
The Executive committee agreed a Deed of Transfer, moving the assets from the old National Kidney Federation to the new Incorporated National Kidney Federation on 18th December 2004.
The number of ESRF patients is a matter of controversy. Part one of the National Service Framework quotes a 5% per annum growth rate, however the NKF believes this figure to be 10% per annum. Speakers from the Renal Registry have spoken of 7%-8%. Whatever the true rate of growth, one fact remains indisputable – patient numbers are growing quickly, far more quickly than the provision of services is keeping pace with. By the end of 2005 we fully expect ESRF patients to number 40,000, of which approximately half are, or should be, on dialysis and half are, or should be transplanted. It is already clear that dialysis units are overrun and that transplant centres are not carrying out an adequate number of organ transplants. The Federation utterly rejects this situation, and the failure of the state to provide adequate treatment to our patient members. We regard this lack of essential life saving treatment in the UK as unacceptable in a country with acknowledged economic strength.
The Federation believes that each patient should have the full treatment options available, early detection, preventative management, timely access surgery, planned progression into either Peritoneal Dialysis or Haemodialysis – none of which happens with an overstretched service that does not provide the access surgery early enough to avoid last minute crisis situations; puts patients on CAPD because there is no room in the unit, or dialyses patients through the night because the daytime stations are “full up”. Choice (in conjunction with clinical advice) can only take place when there is adequate treatment provision available. Home Dialysis is another choice option, which should be available to all suitable patients; it is not a way round full up units.
Transplantation is for most of our patients the gold standard treatment, yet less than 2,000 kidneys are transplanted each year. Transplant units are under utilised and operating below potential capacity. There is a shortage of Transplant Surgeons and the question of “Transplant Centre closures” continues to be threatened, all this despite there being more than 5,000 patients waiting on the transplant waiting list, and a further 20,000 renal patients, most of whom would like to get onto the list. Of the 5,000 waiting on the list, sadly 400 to 500 die each year whilst waiting.
During the year, the NKF wrote to the Royal College of Surgeons asking for information as to what was being done to address the shortage of transplant surgeons.
During the year, the Secretary of State for Health John Reid MP announced the merger of UKTransplant with the National Blood Authority. The NKF is keeping a watching brief on this development.
The National Kidney Federation continues to support every initiative aimed at increasing the number of people registered on the organ donor register, we consider the register to be a fine way to record a persons commitment to transplantation after death, however we are very concerned to learn that in the UK 48% of relatives refuse permission for the organs to be used. This refusal rate is nearly double that of our European partner countries. There may be many differing reasons for this refusal rate, but whatever the reason, we must endeavour to ensure that potential donors not only sign the organ donor register, but also talk to their relatives about this decision. The NKF does feel that the Government could do very much more. We want them to back a major increase in organ donation, provide more surgeons, more theatre time, less organ wastage in hospitals. After all, more Transplantation and less dialysis would save very large sums of NHS money!
We transplant less than 5 kidneys each day in the United Kingdom, despite there being 21 Transplant centres. If we could simply double that amount to 10 kidneys a day, we would resolve the shortage and get rid of the waiting list. Every normal day in the UK, 1,500 people die, people who together carry 3,000 precious kidneys. Obviously not all are suitable to be transplanted, but surely better organisation would ensure that at least 10 kidneys from the pool of 3,000 were put to better use and not wasted. To achieve this more Government commitment is needed.
In January 2004 the National Service Framework (Part One – Dialysis and Transplantation) was published. The document is a fine set of standards and markers but it lacks detail and accountability. The NKF has been busy during the year working with other groups to produce companion documents aimed at turning these laudable aims into measurable targets which clinicians and commissioners can regard as the “renal bible” of what they should be doing and providing in every area. KPA’s must now be the ears and eyes to ensure that when the standards are not being met a challenge is forthcoming from the patients. The NKF is very willing to help KPA’s to undertake these “local battles”.
The NSF Part Two – (Prevention and detection, plus end of life issues), was published in February 2005 (strictly speaking outside the scope of this report). This long awaited and long delayed document is widely welcomed in the renal community. “Standards” evident in part one, are now replaced by “Quality Requirements”, however, despite the changed terminology what is really of importance is that commissioners and financial directors are made to understand that early management of CKD results in a better outcome for patients and immense savings of cost in the long term. Failure to take these messages on board when planning, will lead to a greater incidence of ESRF, and exacerbation of the problems caused by to many patients and to little provision of services.
This group of 100 plus Members of Parliament, serviced by the NKF Chief Executive and chaired by Dr Evan Harris MP, Peter Pike MP, and John Randall MP have continued to meet throughout the year and ask questions of Ministers about renal provision. As the Human Tissue Act passed through the final stages of parliamentary procedure, Evan Harris MP tabled an amendment to “allow a system of presumed consent “. Whilst no one believed a majority view existed, or that the amendment would be passed, considerable disquiet arose when the Government “whipped” its own Labour MP’s to vote the amendment down. It is normal practice to allow this type of vote to be a free vote of conscience for individual Members, and the NKF has to questions why such freedom was not granted on this occasion. When questioned about this at the NKF Conference, the Health Minister Rosie Winterton, said that “the government wanted to preserve an individuals right to donate an organ or not” she said it was an issue of freedom of choice.
The NKF has continued to be represented, and makes submissions to NICE (National Institute for Clinical Excellence). We were particularly pleased when upon appeal, the institute finalised its recommendations in regard to immunosuppressant drugs and left all the major four drugs available for use by renal clinicians.
The Health select committee is currently enquiring into the influence of the pharmaceutical industry over bodies such as patient groups. The NKF believes its work with pharmaceutical companies to be of great benefit to patient groups and has written to the committee to express this view. The relationship between pharmaceutical companies and the NKF is covered by a policy statement adopted in 2002 which says: -
PHARMACEUTICAL COMPANIES
The National Kidney Federation (NKF) has a working relationship with many pharmaceutical companies and this works to great advantage. The nature of the support that an industry partner may give can vary, but essentially it usually comprises of an annual donation to assist with the costs of our core activity, office and staffing, plus assistance either practical or financial with a particular project that will assist kidney patients.
The NKF always likes to establish a close working relationship with these industry partners and in particular likes to encourage the relationships to be long term. It is of prime importance to the NKF that its commercial neutrality is scrupulously preserved so that the interests on one company over another are not advanced by the NKF, or the interests of an industry partner are not put before the interests of kidney patients or carers. The independence of the National Kidney Federation is one of its most important assets, and is one reason why Government is prepared to listen to the NKF over and above commercial bodies. This independence will never be sacrificed in return for financial support.
The relationship with our Industry Partners (pharmaceutical companies and renal industries) remains strong and beneficial. Currently numbering 15 companies, the NKF hosts meetings of them at three monthly intervals to consider joint projects of benefit to patients. The NKF is grateful to those companies for their financial support and continued close working
It is with the greatest sadness that we record here the death of Katherine Wright, editor of the NKF magazine “Kidney Life” Katherine made the magazine what it is today, and we owe it to Katherine to ensure that the publication continues and goes from strength to strength.
It was also a great shock when Sara Tyler, founder member of the YPG succumbed to infection and died in hospital during November. The YPG would not have existed were it not for a letter penned by Sara to the NKF and the resulting work that she then took on to get this new group established. The YPG have expressed their wish to continue with the group and make it into the type of organisation that Sara envisaged. They have also agreed to attend CEAPIR in the hope that the YPG concept can become Europe wide.
The YPG Pen Pal scheme is proving very popular and may be extended.
Our team of website volunteers now stands at five persons led by the architect of the site, Richard Okell. The work they do for us, and the resulting benefit to the NKF is enormous, as evidenced by the 500 plus pages of information and the 200,000 visits to the site so far recorded. The NKF website has now been “Betsie” enabled making it readable to more people suffering disabilities of sight.
The Helpline remains a “lifeline” to our members and calls continue to be received from both patients and renal staff alike. Originally staffed by one person, Jane Oldfield, the NKF has now added to the Worksop team to ensure that incoming calls can continue to be dealt with quickly and efficiently. The range of printed leaflets distributed by the Helpline is vast.
During the year, our National Advocacy Officer Robert Dunn has been given a team to share the load and provide a more immediate and localised service. In the North, we have appointed Dennis Crane, and in the Midlands David and Jan Porter. Robert covers the South in addition to his national responsibilities. A grant from the Department of Health offsets part of the cost of this project.
During the year, as evidence of the wide variation in provision, Robert Dunn submitted to the Department of Health details of Primary Care and NHS Trusts which were not financing at least 4 weeks UK haemodialysis away from home.
The NKF appointed George Finch to this post during the year – early results are very encouraging and we look forward to the extra income that we hope will be forthcoming from this initiative.
Tim Statham (NKF Chief Executive) was, with our support, elected as Vice President of CEAPIR during the year. The completely new team of officers lost no time in making changes which we in the NKF believe are of benefit, and in April we shall be sending two members of the executive committee and a representative of the YPG to the General Assembly in Luxembourg to continue the modernization process. The President of CEAPIR was a guest speaker during the October Council Meeting, and the NKF Conference was attended by four of the five CEAPIR officers.
During the year meetings have been held with Diabetes UK in order to forge closer working ties between the two charities. The medical links between the two disease areas have become more obvious, and more important.
The Executive committee has resolved to establish a Multi cultural support group for all renal patients of ethnic origin. The founder chairman will be a key position and it is vital that this part of the formative process is handled with care and vision. The NKF hopes to be able to make further announcements shortly.
We are pleased to inform members that during the year, plans have been made by the BBC to hold a Transplant week during August 2005. Each night BBC one will carry a Transplant documentary, followed on the Saturday by a “Children in Need” style evening containing a special episode of Casualty and Holby City with Transplantation as the theme. The aim is to add more than a million extra names to the donor register. The NKF has offered its full co-operation to the BBC.
Tim Statham took part in a Community Channel discussion on Organ donation involving actors from “Eastenders” entitled “SoapLife”
The NKF continues to assist the media on a daily basis with their requests for renal background to current stories and projects. Many storylines to do with renal disease and transplantation are researched via the NKF.
There can be no doubt that the work carried out by KPA’s is of the very greatest benefit to kidney patients, so it remains a matter of concern that so many report that finding “new blood” for the committee or for officer positions is so hard to accomplish. The NKF is a Federation of KPA’s and we would urge all patients to give whatever time they can to the benefit of their local group.
The NKF is pleased to report one singular success of the Welsh KPA, who working in conjunction with the NKF has managed to get Paediatric Services at University Hospital of Wales restored.
The Executive have agreed that it is of importance that there be representation from England, Wales and Scotland on it’s committee, and that if this does not happen at the annual election, then one representative each should be co-opted from the “absent countries”.
We are indebted to Ray Mackay (Vice Chairman) and his Conference team for all the hard work they did to make the 2004 Conference near Coventry such a success. It was a wonderful conference with really great speakers. The hotel however turned out to be not so good, and the committee has resolved not to use it again. The hunt is now on for another Midlands/South venue to alternate with Blackpool.
During the year, the Executive Committee formed a second panel of advisors, so that it now has Medical Advisors (as before) and Specialist Advisors. Juliet Auer has moved from the medical panel to the specialist panel. Dr Ali Bakran has joined the medical
advisors
Acting on the advice of the Charity Commission, the NKF appointed a professional legal advisor - Russell-Cooke, solicitors, of Putney.
The staff currently in the employ of the NKF are 11 in number as follows: -
| Full Time | |
| Chief Executive | Timothy F Statham OBE |
| Office Manager | Jenny Bartlam |
| Assistant Office Manager | Margaret Bacon |
| Helpline Manager | Jane Oldfield |
| Secretary | Sue Edwards |
| Admin Assistant | Linda Fores |
| National Advocacy Officer | Robert Dunn |
| Part Time | |
| Regional Advocacy | David Porter |
| Janine Porter | |
| Dennis Crane | |
| Trust and Grants Officer | George Finch |
They are a very good team and we are committed to being good employers. The office equipment is in good order and the building remains of a suitable standard although the lack of storage space and parking is a difficulty,
We commend this report to you.
Michael Hill
Gary Lloyd
Chairmen
1st February 2005