Kirit Modi (Vice Chairman), Marion Higgins (Chairman), Michael Abbott (Secretary), Ray Mackey (Treasurer) [inset].
All the above can be contacted through the National Kidney Federation Head Office - Tel (01909) 544999
The National Kidney Federation is unique because, although there are a large number of kidney charities, the NKF is the national kidney charity actually run by Kidney Patients for Kidney Patients.
Most Renal units have a Kidney patient Association (KPA) specifically attached to that unit, however, in 1978 these independent charities realised that they needed a national organisation to fight their cause as renal provision was in dire difficulties, overstretched, and under resourced. If ever there was a case of post code provision, renal disease was it! Currently there are 69 KPAs and they come together as the controlling Council of the National Kidney Federation, the KPAs are both the ears and the eyes of the NKF and its controlling force. Patients are the Officers of the NKF, the Executive Committee of the NKF and the workforce of the NKF. Apart from six members of staff, all other personnel are either Kidney patients or carers of Kidney patients.
Unlike other kidney charities, the NKF has only two roles campaigning for improvements to renal provision and treatment, and national patient support services.
The NKF lobbied for, and got, an All Party Parliamentary Kidney Group of 174 MPs and Lords established in Parliament and they feed that group on a day to day basis with the information needed to keep renal disease in front of the nose of Government.
They maintain a continuous dialogue with Ministers and the Department of Health. They attend all of the main Political Party Conferences, and they joined with others under the BMA umbrella to be founder members of the Transplant Partnership.
When the Government announced that 34,000 renal patients were too small a group to warrant a National Service Framework the NKF took action. They formed with others a new charity The Kidney Alliance, and then worked with other members of it to create a Dialysis version of a National Service Framework (NSF) of their own. Then, they launched this document within the House of Commons in front of the very Ministers who had rejected the idea of an NSF. The Government took only 4 weeks from that day, to reverse their decision and announce a Renal NSF of their own. Quite a victory for any group, let alone a group of very ill patients! Part 1 of the Renal NSF was published by the Department of Health on 14 January 2004 (click here for more information) with part 2 following in February 2005. The NKF provided considerable support and input to the Department of health during the preparation of these two vital documents.
The National Kidney Federation provides and maintains a website which has rapidly become the hub of the renal community. This website www.kidney.org.uk is vast, being larger than 5,000 pages and viewed by more than 200,000 patients, carers, renal professionals, doctors and nurses worldwide every year. The site is even more incredible when it is realised that like the NKF itself, the website was built by kidney patients. If the subject is renal, the answer is on this fantastic website. Above all the website has brought patients real information about their condition, and it has put patients in touch with each other. It has given kidney consultants, doctors and nurses a chance to talk with each other, and with patients, about issues and concerns that before the website they may have been completely unaware of.
For those that do not have access to computers, the NKF runs a low call cost National Kidney Patients HELPLINE (0845) 601 02 09 which takes about 200 calls a week from patients, carers and healthcare professionals, and the NKF distributes its own magazine Kidney Life completely free of charge four times a year to more than 19,000 renal patients.
Because the Medical Information on the NKF website is so comprehensive, the Federation decided that the website would become the basis of all future Kidney Disease leaflets. Within two years of that decision the NKF became the largest provider of renal leaflets in the UK. Whether you are an individual facing a Kidney Biopsy and just want one leaflet, or a Renal Unit requiring three thousand leaflets on Anaemia, the solution is simple. You ring the Helpline and say what you need, then the information is downloaded into a set format, printed out, and put in the post that very same day. Thousands of different leaflets are possible, from travel insurance and holidays, to dialysis, transplantation and living donors.
Sadly problems continue for many renal patients and frequently the Helpline finds it necessary to refer the matter to its own Advocacy Officer team, who then brings into play their experience of the issues, the problems and the frustrations of current provision. Many patients and carers have been helped by the National Advocacy Officer and many KPAs have taken up a local fight with his assistance. The Advocacy Officer also represents the NKF at many management and Commissioning meetings. Click here to see the Policy Statements of the NKF.
Once a year the NKF holds its own National Conference to which more than 400 renal patients attend over a three day period. This is a very special occasion and one that takes much organisation. However, it is very successful and it provides a platform for the NKF to listen to patients, and for patients to tell the NKF where the shortcomings are in renal provision. Frequently, Government ministers and healthcare professionals are on hand to hear for themselves the issues, but above all it is an opportunity for a thorough exchange of views.
The NKF does not raise money directly from the public, instead it is supported in its work by the renal industries surrounding and supporting care of the disease. It exists solely because of the generosity of those sponsors, however money is always tight, and much more could be done with greater sponsorship.
Although renal disease usually affects the middle aged or elderly, there are younger kidney patients and the NKF has recognised that they have special needs. During 2002, a NKF Young Person’s Group was formed, split into two age groups – 0 to 18 and 18 to 40. Whilst the younger group will concentrate on issues such as schooling and recreation, the older group will consider relationships and related subjects. Above all both groups will aim to reduce the isolation often felt by kidney patients.
The NKF wants to forge closer relationships with other kidney charities to ensure that resource is used effectively and that different groups dont keep reinventing the same wheel. A large number of kidney patients come from ethnic backgrounds and this presents separate difficulties which have to be faced, translation of leaflets, involvement in the patient organisations, shortages of donor organs, cultural views toward transplantation.
The Kidney Patient Associations (KPAs) themselves need strengthening and in the coming years the NKF intends to focus on providing real help to these groups of patients who are struggling to maintain their local service within their own units. The renal NSF, when fully published, will require close monitoring to ensure that implementation does take place in a timely and helpful way. The NKF is already structuring itself to take on this responsibility.
In Europe the Renal Patients organisation is called CEAPIR, and the NKF is already a full and active member taking the fight for better treatment and resource both to the European Parliament and to individual countries as necessary and bringing back to the UK the successful ideas practiced abroad.
The National Kidney Federation is constantly aware that the earlier renal disease can be detected and treated the better the outcome for the patient. Much effort is to be put in, to try to identify these groups at high risk who are unaware of the danger to their health and the possibility of their entering End Stage Renal Failure.
Whilst there clearly have been many advances in renal care since the foundation of the NKF in 1978, it remains true that the period started with a shortage of renal provision and resource and ends in exactly the same plight. The NKF hopes passionately that over the coming years we will see real strides being made in adequate provision and that scientific developments will head off the ten yearly doubling of renal patient numbers currently being predicted. It is very sobering to think that if the NHS is struggling to cope with 42,000 kidney patients today, how will it cope with 80,000 in ten years time?
Click here to view a short film previewing the work of the NKF.
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