UK National Kidney FederationLast year the annual report spoke of the need to consolidate the remarkable advances made by the NKF in 1999 – formation of the All party Kidney Group of MP’s, The Kidney Alliance, The National Kidney Patients’ Helpline, the NKF Website, our attendance at party conferences and the office modernisation.
Well in the event, the NKF continued to expand throughout year 2000. Consolidation took place to secure the 1999 gains, but the pace of change also continued unabated. On reflection, this was bound to happen, for we are faced with the terrible, but inexorable growth of renal patient numbers. In ten years there will be double the number of patients in need of renal replacement therapy than there are today. Sixty-six thousand patients instead of the current thirty-three thousand.
This growth predicted by the Governments own figures acts as both the driver for improvements, and the awful fear that the NHS will just not cope. All of us can tell tales of overcrowding, insufficient staff and machines, lack of resources (money) and patients being turned away. If the NHS is not coping now, then how will it cope with all the extra patients predicted – another 9 patients each and every day for at least the next ten years.
It is beholden upon the NKF to exert all the pressure within its power to force the Government to recognise the need for action, it is beholden upon the NKF to demand improvements at regional and local level. We have to educate those that hold the purse strings in the realities of renal care. We have to tell the public at large about our need.
For the majority of our patients, dialysis remains the only lifeboat available. CAPD, or the newer APD (also known as CCPD), are welcome innovations, but growing experience of these methods indicate that they do not provide an answer for much more than five years. This means that sooner or later, most will either return to, or begin, Haemodialysis. Home Haemodialysis is relatively rare, and so we must focus on the provisions of more Haemodialysis stations in renal units, more renal nurses, more consultants – more satellite units and more renal units.
We need to improve the system of transport to, and from, dialysis sessions so that waiting times and costs are reduced. It is intolerable that patients should wait hours for their journeys, should suffer journey times longer than thirty minutes and in a shameful 32% of cases have to pay hospital transport charges – on average amongst those that pay - £7.60p per visit. It should be a level playing field – no one should be asked to pay for journeys that are essential just to stay alive.
This is where the investment in the Kidney Alliance has begun to pay off. Members will recall that in 1999 the NKF together with the Renal Association formed this new committee. Its brief was singular – to create a renal version of a shadow National Service Framework in answer to the Governments decision not to produce one. This document now exists, it was launched in the House of Commons in January 2001 and it sets the standards of dialysis that we all need to see across this country. It isn’t a Government NSF, indeed it isn’t even called a renal NSF, however to all who read it that is exactly what it is.
The document “End Stage Renal Failure – A framework for planning and service delivery” is large – 94 pages. It should be read by us all, because we all need to compare what is happening on the ground with what should be happening as set out in this document. We will use this document at every level, we will use it to argue our case with the Government, with Renal Commissioning Groups, with health authorities and with hospitals and renal units as appropriate. It is the bible of the standards that we require.
The Government has welcomed our document, but it is also devoting a section of its own Diabetes NSF to renal matters. The vice chairman of the NKF, serves on a working party putting this section together – and our document will assist him in that task.
In November the National Kidney Federation circulated a six-page survey form in order to obtain the patients view of dialysis treatment in the UK. Two thousand eight hundred replies were received and the results were reported in the spring 2001 Kidney life.
Following the publication of the disappointing Government review of Transplantation in February, the NKF signed up to a BMA (British Medical Association) initiative to form a “Transplant Partnership”. This partnership brought together the main players in the field of transplantation and has already proved to be a powerful voice for change and improvement.
The work begun with the publication of a document “Organ Donation in the 21st Century” which set out an agreed campaign to force improvements in all transplantation areas. The campaign seeks new legislation, changes to the organisational structure of the organ donation programme, and changes in the established practice of organ donation. This is a long-term campaign, it will not be achieved overnight, although the Partnership has made a very good start. The NKF serves on its strategy committee and all its sub committees.
The only area of transplantation where numbers have risen during the past year has been that of Living Donation. The NKF realising the importance of Living Donors has now placed onto its website a zone of information devoted to this topic. This coming year will see further expansion of this initiative in an attempt to raise awareness of hospitals and public to live donation.
The Alder Hey organ retention scandal broke during the year in question, although an entirely different issue to organ donation, there is no doubt that the result will be a reduction in the numbers of those willing to become a donor. The NKF did, and continues to try and counter this negative issue at every opportunity.
One success just prior to Christmas was persuading Granada Television to re-write slightly, a harmful organ donation story affecting the character “Vera Duckworth”. Two episodes of the programme carried the NKF helpline number at the end and we received more than sixty calls as a direct result.
Evan Harris MP continues to chair this all-important body which on a daily basis projects renal issues onto the national stage via the House of Commons. Questions are tabled, oral and written answers obtained and debates initiated. At the beginning of the year we made an alteration to the servicing of this group and although still an expensive activity we now feel that the group is a much more effective body than during its first few months of existence. The APPKG is one of the most important tools we have to achieve our objectives. The APPKG has hosted a number of meetings in the house – it launched the Kidney Alliance document and gave Dr Michael Wilks, chairman of the BMA Ethics committee and Transplant Partnership the opportunity to address both MPs and Lords on issues surrounding the Transplantation Partnership Campaign.
The NKF plans to have a presence at the Labour Party Conference in 2001.
The NKF continues to value the close working relationship built up with the Department of Health and Government Ministers. We were particularly pleased that Lord Hunt, the Health Minister, was able to open our Blackpool Conference in September and that he used this opportunity to announce the setting up of a National Group to look into transplantation issues. He promised the NKF that the group would have patient representation.
The NKF also welcome various Department of Health initiatives aimed at increasing the number of Organ Donors.
The establishment of Regional Specialised Services Commissioning Groups (RSSCG’s) will have an important impact on the provision of Renal services. The NKF responded by appointing an Advocacy Officer who has three duties of Patient Advocate, RSSCG contact officer and Research Officer. Appointed in February, he quickly got himself onto virtually all of the RSSCG boards and has proved to be a very important member – introducing “our” expected standards at each and every opportunity. When the RSSCG’s made their first annual report to Government, the Government must have been impressed by how similar all the renal sections of the reports were!
The NKF Patient helpline is now taking around 100 calls per week from patients, carers and renal staff. It works hand in hand with the Patient Advocacy Officer, often electing to pass difficult situations over for further investigation and assistance. Although not the provider of individual medical advice it is well placed to resolve matters such as holidays and insurance or to lend a compassionate ear to those in distress. The helpline is now able to provide leaflets, singly or in bulk on virtually any renal issue or medical condition that exists. The NKF is grateful for the continued financial support given by The National Lotteries Board, the Department of Health and Fresenius Medical Care in respect of the helpline.
The NKF Website www.kidney.org.uk goes from strength to strength. Set up and maintained by volunteer renal patients under the leadership of Richard Okell, this site is now close to 400 pages in size. It has been viewed by more than 30,000 people and has quickly become the hub of the renal community in the UK. The medical section has been entirely re-written by our advisor Dr Rob Higgins and can now claim to be the best source of renal information on the web anywhere in the world. It is the source of the leaflets that the helpline uses, it is the place where patients can talk to other patients in a similar situation and it is the place where new patients can find help and details of their local KPA.
The NKF was sad to see the closure by Novartis of the Xenotransplantation research unit in Cambridge, IMUTRAN, as this was an organisation which seemed to hold much promise and was visited by the NKF early in the year – indeed IMUTRAN supplied a conference speaker for the NKF in September. All is not lost however, for Novartis have joined with Bio Transplant to form a new company in Boston USA to continue the work – we wish them well.
In September, our Council meeting passed a resolution supporting Stem Cell research. We were pleased to note that both the House of Commons and the House of Lords passed the resulting Government legislation despite a sizeable campaign against it. We are indebted to members of the NKF Executive Committee and to the All Party Kidney Group for their work towards a successful conclusion.
Renal patients cannot ensure they are receiving the best treatment unless they know what to look for, and monitor their own condition. With the support of Janssen-Cilag, the NKF was very pleased to launch a Dialysis Patients’ “Know Your Numbers Card” in the autumn issue of Kidney Life. This handy little carry card easily enables any patient to record their vital blood readings and compare them with Renal Association standards. If readings don’t measure up, then the patient can tackle their own consultant about it and agree a course of action to put things right – real patient empowerment!
This has been such a popular move with our members that a Transplant version of the card is currently being prepared.
The winter issue of Kidney Life announced the launch of the “Patient Fact-File”. This was also a collaborative venture with an Industry Partner – this time Roche Products Limited. The resulting file is now given to all new members of the Federation through the helpline, patients can also obtain it for their renal units direct from Roche.
NKF members cannot fail to have noticed the amazing transformation of Kidney Life, the magazine looks, and is, a highly professional publication. It has increased in both size and interest. Our thanks go to Katherine Wright, who does such a wonderful job editing this quarterly magazine, and to, Walker Associates for bringing its appearance into line with current standards.
The autumn issue also saw the introduction of a new section “Medical Matters”. These extra four pages provide all the latest breaking news in the renal medical world.
Considered by many to have been the “best conference yet” it attracted some 400 attendees and more than usual press interest. The theme “Science fiction or Science fact” was a popular choice and as usual question time was just too short! This year Question time will be further extended. Our thanks go to Gary Lloyd for his organisational skills.
We are very pleased to report that during the year the Scottish Federation of Kidney Patients Associations (SFKPA) affiliated to the National Kidney Federation bringing the total number of NKF KPA’s to 62. We welcome the Scottish KPA’s and look forward to their participation in our activities.
Only two activities involve KPA’s in the fundraising work of the NKF, the Annual Draw and the sale of Christmas Cards. It must be right that KPA’s raise some funds for their federation, but at the same time the Officers are very well aware that most KPA’s are busy raising funds for their own charity. The NKF is pleased that both the sale of Christmas cards and draw tickets went well last year, and even more pleased that this time selling draw tickets did not involve KPA’s in any additional work. Plans have already been put in hand for next year to ensure that KPA’s do not lose out financially from direct selling of the draw tickets.
At the beginning of the year the NKF enjoyed financial support from five industry partners. The NKF remains indebted to those original partners for everything that they did and still do, however the Officers and Executive committee were acutely aware of how vulnerable the NKF was with such a narrow financial base. An early decision of the new officer team was to widen this financial base and increase the revenue in order to fund all the heightened activity so necessary to our work. This report is pleased to announce that the NKF now has eleven industry partners. Coupled with all the other activities this has meant that the income has risen from £225,000 in 1999 to £331,000 in the year 2000. The NKF is indebted to Tim Statham, our General Manager for this fine result. However successful this may be, the NKF still needs to find further partners if our activity is to match the remorseless increase in patient numbers and the ever necessary workload in trying to influence renal provision as provided by Government and the Department of Health.
The staff of the NKF now comprises in total, a General Manager, Advocacy Officer, Office Manager, Helpline Manager, Office Secretary and Office Assistant. Changes of personnel during the year were as follows:-
Appointment of General Manager (previously employed as NKF Fundraiser)
Appointment of Advocacy Officer (February 2000)
Appointment of Office Assistant (replaced work experience school leaver)
Chief Executive
NKF Fundraiser