UK National Kidney FederationLeadership
March 2002 saw the election of a new team of NKF officers: Gordon Nicholas as Chairman, Mick Hill and Gary Lloyd as vice chairmen, together with Treasurer, David Griffen and Secretary John Powell. These officers, together with the members of the Executive committee, have maintained throughout the year the progress and momentum so necessary to the welfare of kidney patients. The NKF is indebted to them all, and to the President, Frank Howarth.
National Institute for Clinical Excellence
The institute (NICE) instigated two examinations during the year, both requiring submissions on behalf of the Federation:
'Home versus Hospital Haemodialysis' and 'Immunosuppressant Drugs'.
Whilst the NKF submissions were of necessity long and complex they essentially both argued for patient and clinical choice and opposed any artificial restrictions being placed upon providers by the Institute or its agencies. We are pleased to report that with regard to the Home versus Hospital Haemodialysis enquiry, NICE have taken the same view as ourselves and all is well. We still await the completion of the second enquiry, but in order to press our points we are pleased to report that two of our officers have been appointed to this investigation – Gary Lloyd and John Powell. This latter report should be published during 2003.
Patient Numbers
As if the Government projections were not bad enough ( 34,000 patients on renal replacement therapy today, rising to 68,000 in ten years time ) it is now becoming very clear that more than 100,000 people are currently living with some form of Kidney disease in the UK, yet are not identified by the renal therapy network of NHS treatment and provision. If you then add to that appalling statistic the recently reported increase in numbers who are obese or suffering from Diabetes, you cannot fail to see why the NKF is demanding immediate and dramatic enlargement of the renal service and better early identification of those, who if left untreated, are likely to be the End Stage Renal Failure patients of the future. If immediate enlargement of renal services does not happen, then renal therapy will be overwhelmed by demand – we are already receiving reports of Dialysis shortages, overcrowding, night time shifts and patients being refused Dialysis.
Dialysis
Problems for our patients continue :-
In the UK, treatment is only provided for 328 patients in every million of the population. In countries such as Germany, France, Spain and Italy that figure is 63% higher at 537 people per million. In the USA treatment is provided for 1,000 in each million. This is a United Kingdom scandal.
Transplantation
Undeniably there is both a shortage of donor organs and a shortage of NHS infrastructure for dealing effectively with those organs that do become available. The NKF has worked hard to address these issues.
The advent of the new health authority, UKTransplant, has brought new money, energy and drive to transplantation, however, results will take time to work through into the system. In 2002 we saw a very poor start to the year with the number of transplants being undertaken dropping by 13%, however, by September that decline had been halted and the following three months all showed substantial increases – we now have to hope that this improvement will become the building blocks upon which we create a better service.
Our aim must be to reduce the list of those who wait for a Kidney Transplant. All of us need to do our part to create a culture of Transplantation within all UK Hospitals – never miss an opportunity to talk about Transplantation whenever and wherever the opportunities arise.
Recently there has been much media interest in the “trade in organs” that exists. The NKF has suffered a number of illegal postings on its website where individuals or companies from the Indian Subcontinent have placed messages offering to sell, or provide a Kidney. The NKF deplores this trade in human misery and removes such messages speedily, but we do feel that the Government has a duty to address this issue and take ownership of both the problem and any resulting solution. We believe it is time for a public debate which highlights the numerous issues that surround this topic and causes the Government to consider some of the creative ideas being suggested to resolve this.
Earlier in the year the Department of Health published a report 'Human Bodies, Human choices'. The NKF now wishes to see the Government introduce new legislation to remove some of the existing legal impediments to many transplant operations.
National Service Framework
Work on the four modules of this essential document is well under way, assisted at every step by members of the NKF. Modules one and two are already with the Ministers and it remains to be seen whether the resulting framework will prove to be the robust friend of all renal patients that we hope it will be. We will all hear a great deal more about this framework in the coming months.
Influencing Decisions
Whilst we were sorry that Lord Hunt no longer has direct ministerial responsibility for renal matters, we welcome David Lammy MP and Jaquie Smith MP in his place. The NKF considers that it is essential to retain a good working relationship with all at the Department Of Health, be they Ministers or Civil Servants and therefore have welcomed the suggestion of Jane Verity (Dept of Health – Renal Team Leader) that she and her team have regular six monthly meetings with the NKF.
The All Party Parliamentary Kidney Group continues to maintain a membership of just over 100 Members of Parliament and Lords. Apart from meetings which take place three times a year, the real value lies in having a large and influential body of renal issue supporters within the House of Commons, able and willing to raise issues with the Ministers as and when necessary, and to hold them to their answers ! The APPKG has retained the same officers as 2001, chaired jointly by Dr Evan Harris MP, Peter Pike MP and John Randall MP. The group is serviced by the NKF Chief Executive.
Young Persons Group
During a representative trip to Holland, it was learnt that many other countries have specific organizations aimed at helping young people suffering ESRF. When the NKF then received a letter from Sara Tyler offering to establish such a group for the NKF, the opportunity was gratefully accepted. Sara has now established two groups, the first for patients aged up to 18 years and a second group for those aged between 18 years and 40 years. Sara has now been co-opted onto the Executive committee and working with two other officers has already produced the first YPG newsletter. Details can be obtained form Worksop or from the NKF website.
Business plan
The Executive Committee has now agreed a five year business plan 'Serving Kidney patients'. This plan aims to ensure that the NKF keeps pace with the rising patient numbers, but does not grow in size purely for the sake of growth itself. The plan will keep the NKF fully focused on the core activities that help Kidney patients and carers.
Industry Partners
The NKF is pleased to record that the number of companies wishing to work with and support the Federation financially has risen to 14. We are indebted to these companies for the help that they give and for the projects they embark on at our behest. The co-operation is two way and the NKF is the stronger for it. One innovation is the Industry Partners meetings that are held three monthly and chaired by the NKF. It is widely believed that this is the first time that a Patient Group has hosted meetings between commercial companies who are themselves normally competitors. It is an intriguing sight, but one that leads to very constructive outcomes to the benefit of renal patients.
During the year two surveys were conducted. The first examined Immunosuppressant drugs and was made possible by an educational grant from Fujisawa. The second dealt with the issue of Compliance, supported similarly by a grant from Wyeth. Both these survey forms were completed by more than 2,000 Transplanted patients, and the extensive data collected assisted the NKF with the subsequent submission that it made to the NICE enquiry into these drugs, and the known problems surrounding the taking of them.
This has been very useful work indeed, in particular, the NKF learnt a great deal about why patients sometimes miss taking their Immunosuppressant medication. The lessons have been turned into a presentation which is currently being taken around the country by the NKF to ensure that the messages are acted upon and not lost. So far the presentation has been seen in London, but further presentations are being planned for the following Transplant Centres :- Cardiff, Cambridge, Glasgow, Leeds, Oxford and Birmingham.
The NKF is also pleased that, during the year, further grants enabled the distribution within 'Kidney Life' of a second supply of Dialysis 'Know Your Numbers Cards' and Plastic Patient Identity cards together with an extensive issue of Living Donor leaflets. 'Kidney Life' itself, receives grants from four of the Industry partners. The NKF has also received help with its Parliamentary lobby work and its special plans for 2003. It is not possible within this report to list all of the projects undertaken by the Federation during the year, however, the Federation would like to place on record its thanks to Amgen, Baxter, B.M.Browne, Fresenius, Fujisawa, Gambro Hospal, Genzyme, Genzyme Fabry, Novartis, Ortho-Biotech, Roche Dialysis, Roche Transplant, Shire, Syner-Med, and Wyeth.
Kidney Life
The quarterly magazine 'Kidney Life' remains the focus point for communication between Patients, Carers, KPA’s, sponsors and the Federation. It is a wonderful periodical and thanks must go to the editor, Katherine Wright, and to its layout designer Walker Associates. During the year, at the request of Katherine, the NKF appointed another patient, Sue Lyon, to assist Katherine with this vital work.
Website
Now greater than 500 pages in size, and viewed by 200,000 people, this website www.kidney.org.uk is acknowledged as a central hub for all involved in renal matters, be they Consultants, Surgeons, Nurses, Patients or Carers. It is truly remarkable and a 'must' for everyone connected with the disease. It would be very difficult to think of a 'kidney question' that is not answered on this website, that is why those that view it and contribute to it are worldwide. The NKF downloads all the material for its extensive range of paper leaflets directly from this site, then prints them out and posts them to the enquirer.
We are much indebted to the webmaster – Richard Okell, and his two helpers, James Warham and Sarah Caldwell – all of them are voluntary and all Kidney patients. Walsgrave Hospital Consultant, Dr Rob Higgins, is the medical adviser to the website and he is the person responsible for writing nearly all of the medical information that is now displayed – many, many thanks.
Helpline
The 'National Kidney Patients’ Helpline', housed in Worksop, receives between 100 and 200 calls per week and is bursting at the seams. The workload is being constantly monitored and reviewed, but it is likely that some expansion of this service will soon be necessary. Funding is no longer available from the two sources that enabled the establishment of the Helpline three years ago and it is therefore important that new sources of funding are identified soon.
Advocacy Officer
Robert Dunn continues his work as the Advocacy Officer and will soon have dealt with 300 cases referred to him since the appointment was made. In addition to representing or advising individuals or KPA’s, this officer also attends many Department of Health meetings to inject the NKF viewpoint into discussions. During the year Robert was elected Treasurer of the Kidney Alliance. His work is invaluable to the NKF, yet it is clear that he cannot be everywhere at once. Recently the Executive Committee have begun to examine potential schemes that may, if implemented, lead to more individuals employed to directly help patients and KPA’s at ground level.
Grant/Trust Officer
In an attempt to locate further sources of funds, the Executive Committee now employs on a one day per week basis Rodney Whiteman. Rodney, a Transplanted Patient, has the task of identifying Corporate Givers and Major Trusts, sympathetic to our cause. He then makes written application to ask for support in respect of individual projects identified as necessary by the NKF. Rodney commenced his task in October of 2002.
CEAPIR
The Executive Committee sent three representatives to the annual meeting of CEAPIR in Holland ( all paid for by AMGEN – thanks). Their task was to place a bid to hold the 2003 CEAPIR General Assembly in Britain, however, they were beaten to the post by Ireland who were also able to claim that it was their 25th Anniversary year. The issue went against Britain because we had hosted the General Assembly once before, whereas Ireland had not. CEAPIR remains the only organized voice that Kidney patients have in Europe as a whole. It is because this work is seen as so important that the NKF has been happy to allow its Chief Executive to work closely with CEAPIR in developing a quality document and strategic plans for advancing their cause in all European Countries. (Not just European Community Countries ).
Kidney Patient Associations (KPA’s)
The Federation continues to attract new member KPAs. We are pleased to welcome as full members 'The Friends of Lincolnshire', 'Glan Clwyd KPA' and 'St Lukes KPA, Bradford'. We also welcome Affiliated members '“The Blackburn Asian Support Group'.
Once again, the success of the Annual Draw has enabled the Federation to suspend the payment of subscriptions by KPAs to the NKF during 2002, thereby relieving KPAs of the financial burden of membership. It is hoped that this can continue in future years, but it does depend on the willingness of KPAs to allow the sale of Draw tickets directly to patients and carers via 'Kidney Life'. Last year only three KPA’s declined this option. They paid membership fees instead.
When the National Service Framework is published it will need to be implemented. A heavy duty will fall upon KPAs to understand the standards that the NSF will demand of renal units. The KPAs must be the patients “eyes and ears” and it is the KPAs that will need to take speedy action if they find that aspects of the NSF are not being implemented. When the time is right, the NKF will give advice, assistance and support to KPAs on this matter.
During the year, the NKF began creating a database of patients willing to speak to the Press and Media about renal issues. Now more than eighty names strong, this database is proving to be a boon when it comes to providing the media with actual case studies of the issue currently in the media spotlight. If you are willing to take on this role, then please let the office know.
The closure of Transplant services in Wales has created particular difficulties for younger Kidney Patients who are now required to travel to Bristol for their care. The NKF, through its advocacy officer, has tried to bring some commonsense to bear on this decision to rationalize the service, but it is likely to remain an uphill struggle until those making these decisions realize that with the projected increase in patient numbers and with the accepted target of increased Transplants, more, not less, Transplants centres are going to be needed.
Conference 2002
Grateful thanks must go to Ian Cundell and his team, for organizing and seeing through the wonderful 2002 NKF Conference titled 'Dialysis and beyond'. Held for the first time in Coventry, the event proved to be quite magnificent and proved beyond any doubt the wiseness of holding the Conference in different locations, thereby giving more patients the chance to attend without always having to face huge journeys.
Another feature which was new was the decision to ask chosen and pre-warned patient speakers to 'follow the expert' onto the stage to give the patients' perspective of the same topic. The patients knew the topic they were being asked to make a speech on, but not what the expert was going to say. It meant that for the first time there was a true exchange of views, and it put patients back into the driving seat of their own Conference.
We can tell from the feedback forms collected that patients and carers liked this new format. The Executive committee have now decided that, in future, the Conference will alternate between locations in the North and South of England – this year 2003 will be in Blackpool. 2004 will travel South again.
Sadly, Fresenius Medical Care who have subsidized the Conference for 7 consecutive years have indicated that they will in future need to share this sizeable burden with another sponsor. We are currently seeking a new partner for this essential and worthwhile activity. If it were not for sponsorship, the cost of attending the NKF Conference would more than double overnight.
The NKF Constitution
For the NKF to operate effectively it must have a Constitution that is up to date and relevant to the changing needs of the organization. The Constitution must also meet the needs of the Charity Commission under whose authority we hold Charity status. During the year, as a result of a decision made at the Annual General Meeting, it was agreed that the Constitution should be reviewed. We are indebted to our Secretary, John Powell, who together with a committee of his choosing has been taking this work forward. We look forward to adopting a refreshed and forward looking document.
Medical Advisors
The NKF was pleased that Hany Riad accepted our request that he become an NKF Medical Adviser. He joins Mrs Juliet Auer, Ms Alison Crombie, Prof Terry Feest, Ms Anne Keogh, Prof Alison Macleod, Prof Sir Netar Mallick, Dr Richard Moore, Dr Andy Stein, Dr David Taube and Mr Rob Higgins (Web adviser). We thank them all for their work and support. We also thank Ross Taylor who retired as an advisor during the year.
Work with other organizations
Kidney patients maximize the influence that they have on the provision in treatment by staying in close contact with all other renal stakeholders. During the year, the National Kidney Federation has either hosted or attended meetings with the following groups:-
EDTNA/ERCA, CHI, NKRF/Amgen Fellows Day, National Patients Safety Agency, The Kidney Alliance, Diabetes UK, British Liver Trust, Association of Renal Managers, BKPA, CEAPIR, Wyeth Look and Learn, UK Renal Registry, Xenotransplant-Open Meeting, UKTransplant, Patients Forum, KRUF, BMA Healthcare Seminar, Clinical Conference in Renal Services, Joint Committee of Royal College of Physicians and Renal Association, National Blood Service, Department of Health, The BMA, NHS Purchasing Authority, NKF USA, TIME.
25 listed – the list is not exhaustive.
Office and Staff
I am pleased to be able to report that all existing members of staff remain with the NKF. In addition we were joined by a Trust/Grants Officer as previously reported. This stability is particularly welcome news, as the NKF is fortunate to be served by such a dedicated and diligent team. The Executive felt it right to agree that in 2003 the salaries paid should be increased by 5% across the board.
The computer database which was agreed last year has still not been installed. It was decided that our needs are so specific that only a dedicated purpose built database would suffice. The work to create this has been going on all year and we are now very close to having the database up and running. It has been a frustrating time for all the staff at Worksop and we really are indebted to them for their time and patience so necessary to resolve this. Although this project has taken longer than expected, it is good to report that the database is still a project within the original financial budget. (£20,000 was set aside, but to date only £2,000 of this has been expended ).
During the year, the National Kidney Federation purchased a new Photocopier for Worksop and a new NKF display stand for exhibitions and Trade fairs. This stand, which is most impressive, was first seen at the NKF Conference in Coventry.
Celebrating 25 years
With the close of 2002, the National Kidney Federation enters its 25th Anniversary Year. The Executive has appointed a '25th celebration year' organizing committee. Several new and exciting events and projects are planned, about which you will hear more as the year progresses.
I commend this annual report to you
Gordon Nicholas
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.
Registered Office:- The Point, Coach Road, Shireoaks, Worksop, Notts S81 8BW, Tel: (01909) 544999, Fax: (01909) 481723, Helpline: (0845) 601 02 09, E-mail: 
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Page created: 11 February 2003
Last updated: 27 February 2011