UK National Kidney FederationA Renal National Service Framework (NSF)
In February 2001, just five weeks after the Kidney Alliance launched its “shadow NSF” document in the House of Commons, the Government announced that after all, there was to be a Renal National Service Framework. This is no small achievement. To shift a Governments stance on any issue is unusual, for a group of patients to do it is remarkable. The NKF is very proud of this result, being founder members and contributing partners of the Alliance since its inception.
Now the NKF must change its position, we are no longer in the business of campaigning for an NSF, we are now in the business of working with the Government to produce an NSF of which we can all be satisfied. We have made a good start, the NKF is pleased to report that its Advocacy Officer and three other NKF members have been appointed by Government to serve on the Expert reference group formulating the document.
The NSF will be in four modules, Dialysis, Transplantation, Primary Prevention and Pre-Dialysis, and Alternative models of care. The work on Dialysis is well under way and the NKF has already submitted the names of 25 patients to assist with the Transplantation module. If NKF members want a direct input, they should visit the NSF website or write to the NSF direct.
The NKF has already inputted directly into the Diabetes NSF and into NICE appraisals wherever they impact on renal issues.
Dialysis
The NKF was informed by the Department of Health that there was to be a “NICE” appraisal of Dialysis treatment methods – we welcomed this as we want to give patients and doctors the opportunity to compare Hospital haemodialysis, with Home Haemodialysis, CAPD and with APD. We were therefore disappointed when “NICE” announced that’s its review would only deal with Home versus Hospital, Haemodialysis. We wrote to Lord Hunt and made the suggestion that a further “NICE” enquiry should examine the bigger picture, but in the meantime two of our members, Jean Aplin and Gordon Nicholas have submitted an 18 page submission on the current appraisal.
Much of the ongoing work of the NKF addresses the shortages in NHS dialysis provision and the overcrowding at some units
Transplantation
A new health Authority, UKTransplant came into being and we are delighted to observe that unlike its predecessor it does not just monitor the current state of Transplantation but is empowered to actively promote improvements in the service and ensure that the numbers of donors and transplant operations actually increase. We are impressed by an ambitious five year business plan announced by UKT and the fact that the plan is fully funded by Government.
During the past year the NKF has hosted two large surveys of Kidney transplant patients, the largest surveys of their kind ever undertaken in the UK. We believe that when the results are released it will add enormously to our understanding of the problems that our patients are encountering and enable us to focus correctly on changes that may be needed.
We have continued to promote Live Donation throughout the year by the means of posters and leaflets in hospitals and on our website and we have participated fully in the BMA’s Transplant Partnership. The coming year will see the partnership focus much more closely on the legislation needed to correct the ambiguities of the two existing acts of parliament governing donation and transplantation. The NKF is in continual correspondence with UKT and the Department of Health over the distribution of “donor card” leaflets in public places.
We intend to be fully involved in the forthcoming “NICE” appraisal of anti-rejection drugs – work on this has started already.
All Party Kidney Group of M.P.’s and Lords
The group, now headed by three co-chairmen, Evan Harris M.P., Peter Pike M.P., and John Randall M.P. continues to maintain a membership of approximately 100 members drawn from both the houses. During the year they have received presentations from Dr Peter Doyle (Dept of Health ), Sue Sutherland (UKT) and Sue Marks (BMA). They also hosted the inaugural meeting of our NKF/Industry partners campaign team.
Many of the APPKG members tabled questions in the House of Commons thus helping us to maintain a “high renal profile”. Considering that this was the year of the General Election, when politicians minds were on other things, we can be very pleased with the level of parliamentary activity.
The professional support and servicing of this group has proved to be expensive to the NKF and so changes have been made. Servicing of the group is now done “In house” and this has enabled the costs to be brought down to £5,000 per annum from an original high of £20,000 per annum.
Government, the Department of Health and the NHS
Following the Election, Lord Hunt has now relinquished his lead on renal services, in his place we now look forward to working with Jacqui Smith M.P. Lord Hunt moves to an overall lead on the activities of “NICE”, he does of course remain a Department of Health Minister.
Jane Verity, a member of staff at the Department of Health now has considerable responsibility for the work on the NSF together with Peter Doyle. We enjoy a good working relationship with this team and with the ERG(NSF) chairman Professor Wilkinson, who opened our September Conference. Readers of Kidney Life will know that the Department of Health have actively taken up the issue of the “faulty EMIS” prescription programme on our behalf and we await the announcement of a “Computer fix” for the problem.
The demise of Regional Health Authorities, and the introduction of 30 or so replacement strategic Health Authorities will present new challenges to the NKF, but until more is known about this and the responsibilities they will have, the NKF feels unable to re-structure effectively. Undoubtedly, next year will force changes upon us in the way we work and in the representation that we will need.
CEAPIR
In June, Jean Aplin and Tim Statham attended the CEAPIR General Assembly in Hungary. The NKF’s return to this forum was well received and the other countries were keen to learn of the campaigning successes that we have experienced in the UK. We have assisted CEAPIR in the creation of a new “quality document” which defines the aims and ambitions of CEAPIR, and were pleased to welcome the Ceapir President Hakan Hedman as a guest at our own Conference. In order to keep up the momentum without unnecessary change, the Executive have agreed that the same two representatives should attend the 2002 General Assembly meeting in Holland. We are pleased to have secured commercial sponsorship ( as last year ) to cover the expense of this.
National Kidney Patients’ Helpline
The Helpline now receives more than 100 calls per week – in August the calls peaked at 825. This is a great deal of work for the Helpline Manager and the office staff to cope with, particularly as calls usually result in information having to be collated and posted out. This level of calls does show how valuable the service provided is. Several decisions have been taken to try and ease the burden, however with the existing sources of funding from the Department of Health and the National Lottery coming to an end this year ( the grants were limited to three years and cannot be renewed ) the officers do not feel able to recommend any increase in staff numbers until adequate funding can be secured for the Helpline. It is interesting to note that NHS Direct and Renal Unit staff are frequent users of our Helpline.
The NKF Website – www.kidney.org.uk
Our website is now more than 500 pages large. It is looked at by more than 1000 people a week and has become a vital hub for all in the renal community. New areas this year have included Medical, campaigning, and Conference reports. It is a unique and essential NKF resource that’s value cannot be too highly stressed. We remain indebted to the team of renal patients that created and maintain this on our behalf. We are also grateful for the very real help that Dr Rob Higgins gives on a daily basis to the medical zone of the site.
Research and Representation
During the year we have been involved with, and made submissions to, the Audit Commission report on Patient Transport and to ULTRA who have been considering possible changes to the regulations and practices that govern the donation of organs by living relatives. We have also begun work with the British Medical Association to ensure effective input during the consultation period prior to new Legislation being introduced in the UK to cover Organ Donation and Transplantation.
Patient Services
Following the very real success enjoyed by the Dialysis Know Your Numbers Card, the NKF was pleased to launch a Transplant version. These cards are a powerful example of how patients can arm themselves with the vital knowledge of how well, or how poorly, their treatment is working. Knowledge is power, and who better than the patient to spot an erroneous reading that requires attention before damage is done.
The Department of health fully support these cards and use them as examples of how patients can be empowered in line with the NHS Plan. We are indebted to the two commercial sponsors who enabled these cards.
Kidney Life magazine
Despite all the technological advances, the Internet, email and telecoms, Kidney Life remains our leading method of communication between the NKF, its patients and carers. This wonderful magazine is informative, readable and constructive. Patients look forward to its publication with considerable interest and anticipation, however we would like more KPA’s to submit articles for inclusion. Katherine Wright does a magnificent job as editor, but to ease the load we have now asked Sue Lyon to lend a hand as well. Every kidney patient that is a member of a KPA is entitled to have kidney Life posted to their home free of charge four times a year. If this is not happening, then please ensure that your name and address are passed to the NKF headquarters without delay. We are sure that Kidney Life will continue to grow and expand in line with the activities of the NKF.
The NKF Conference
We were very gratefully to our Conference organiser, Gary Lloyd for the excellent Conference which took place in September, the feedback has been very positive and helpful. A full report of this Conference was produced in Kidney Life and is now displayed on the website This year we have appointed a Conference Committee which is chaired by Ian Cundell, and he has, in line with the decision taken at the September Council, moved the 2002 conference to a new venue just outside Coventry. We are sure that this fine Conference hotel will be a success, but it does depend on those of you in the South who requested this move to now make firm bookings. Our intention is to alternate the Conference between locations in the North and South on successive years. We have already booked Blackpool again for 2003.
Kidney Patient Associations (KPA’s)
During the year we have been pleased to welcome several new KPA’s to the Federation and to allow associate membership to a new UK Federation – Kidney Cancer UK. Both Tim Statham and Robert Dunn visit KPA’s whenever invited to ensure that there is a good exchange of information taking place. If you have not yet invited one of them to one of your meetings, then please do. Jean Aplin and Tim Statham travelled to Glasgow early in the year and were able to address the Scottish Federation. Whilst they were there, they also saw various potential conference venues however reported back to the Executive Committee that it would not be there recommendation to hold the annual NKF Conference in Scotland. The Executive Committee did however offer to lend every possible assistance to the Scottish Federation so that it could run its own Scottish Conference.
Other Renal Organisations and Charities
The National Kidney Federation believes that it is stronger if it creates good links with other renal organisations and charities. To facilitate this the NKF has been represented at meetings of the following (not an exhaustive list):-
ABPI, Pre-Dialysis Nurses, NKRF, Royal College of Physicians, Transplant Partnership, Ceapir, Organ Donation Crisis Summit, Kidney Alliance, British Liver Trust, Diabetes UK, Transplant Games, Glycorex, Department of Health, SFKPA, Thanksgiving Transplant Service, BODY convention, Wellcome Trust – Deliberative Mapping, University of Northumbria, Baxter Education Centre, Partnership in Practice, BMA working parties, EDTNA/ERCA, Iron Study Day, Renal ethnic issues meetings, Commission for health, National patients safety agency, Time.
In October 2000 the NKF learnt that the Foundation of Nephrology was under investigation by the Charities Commission and had been put into receivership whilst owing a promised donation of £20,000 to the NKF for the year 2000. Fortunately we are able to report that the receivers have now paid this sum to the NKF. There have been difficulties with a company that stepped into the gap left by the Foundation for Nephrology, “The Renal Care & Research Association” and this resulted in the NKF circulating advice to all KPA’s not to sign agreements with this company. This remains the strong advice of the NKF to KPA’s. The NKF has severed all links to the “Renal Care & Research Association” and related companies and has not received any monies from them at any stage.
Fund Raising
During the year, money was raised from the Annual Draw ( as circulated in Kidney Life ), from the direct sale of Christmas Cards to the readership of Kidney Life, from the sale of corporate personalised Christmas Cards, and from a new scheme which saw the inclusion of the NKF logo in some Christmas cards available in high Street stores. Added together these activities, whilst labour intensive raise less than 10% of the NKF’s required income, however the involvement of KPA’s in these ventures is highly valued by the NKF, and their success has meant that KPA membership of the NKF can be free of charge.
The income raised from the NKF handbook has now ended following difficulties with that scheme.
Industry Partners
The following companies support the work of the NKF in both financial and practical ways :
Amgen, Baxter Healthcare, Fresenius, Fujisawa, Genzyme, Novartis, Ortho Biotech, Roche, Syner-Med, and Wyeth
The NKF is extremely grateful for this support and for the way that these companies respect the NKF’s commercial neutrality. The independence of the NKF is regarded as one of its most important assets.
The NKF values the one to one relationship that it has with each of these companies, but they all have knowledge and expertise which if pooled might advance the cause of renal medicine, and renal issues. With this in mind, the NKF decided to host “NKF/Industry partner meetings to see whether joint campaigns might result of benefit. After three such meetings the group has been divided into two, Dialysis and Transplantation. It is too early to say what may result from this initiative, but it does look promising and it is quite fascinating to see commercial competitors actually working together under our chairmanship.
Many of these Companies have their roots in America, and the events of September 11th have had financial consequences far beyond what might easily be imagined. The NKF remains hopeful that this will not impact on the generosity that these companies are able to show to the renal community.
Staff
It is pleasing to report that that there have been no changes of personnel during the year. We have a very loyal team working for the National Kidney Federation and this is counted as a most valuable asset. We have shown how much we appreciate their loyalty and hard work during the year in several ways :-
We have commissioned a new database system, which is the single most important improvement we can make that will ease the day to day burden of their work. This should come on stream in stages throughout 2002.
We have reviewed each contract of employment and enhanced the terms of employment where necessary to ensure that all staff members benefited from equal terms of employment.
We have commenced a stakeholder pension scheme for our staff in accordance with recent legislation, but have also agreed to contribute 5% of salary towards the pension of any employee who has worked for the NKF for at least two years.
Faced with an unacceptable demand for a 50% increase in costs for servicing the All Party Parliamentary Kidney Group, we have instead asked the General Manager to take this task “In house”. We have raised his salary accordingly and have changed his title from General Manager to Chief Executive.
The NKF Officers and Executive Committee
During the year Jean Aplin assumed the role of Chairman, rather than Co-Chairman following the untimely death of Ian McGeehan who is sadly missed.
Frank Howarth accepted the Councils invitation to become President
David Griffen took over as Treasurer from David Benoliel
Lord Biffen accepted the Councils proposal that he become a patron.
Max Gabe Wilkinson resigned as a Patron
Peter Heard-White, an Executive Committee member died, and is missed.
Ajodha Ramnarine was co-opted to the Executive Committee.
The Chairman is indebted to her co-chairman, Gordon Nicholas, and to all the officers and all the Executive committee members who have made 2001 such a successful year for the National Kidney Federation.
There is much serious work still to be undertaken, however 2002 must be the year when plans are laid for our 25th anniversary year which will fall in 2003.
Jean Aplin
Chairman
National Kidney Federation
The National Kidney Federation is registered in England and Wales as a Company limited by guarantee (Company No 5272349) and awarded charitable status (Charity Number 1106735). Give as You Earn contributions No. CAF GY511.
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Page created: 23 March 2002
Last updated: 27 February 2011