Annual Report of the Executive Committee 2009-2010
Annual Report of the Executive Committee 2009-2010 (incorporating elements from the 2009 Half yearly report)
The National Kidney Federation (NKF)is very appreciative of the steps currently being taken by the Department of Health, Kidney Care, the NHS and Primary care Trusts to expand Hospital Haemodialysis to keep pace with the ever increasing numbers of renal patients reaching ERF (Stage 5 CKD). However evidence continues to mount that the normal Hospital regime of 4 hour sessions three times a week is a very poor replacement for normal Kidneys that work much more efficiently than a machine, and work to dialyse the human body 24 hrs a day, seven days per week.
Of course no dialysis patient wants more days taken up visiting hospital; neither could hospitals that are already stretched to capacity cope with each patient having more dialysis sessions or longer sessions. But there is an alternative – Dialysis at home. Dialysis at Home would not be suitable for every patient, but the National Institute for Health and Clinical Excellence (NICE) do think that as many as 15% of HD patients should be able to dialyse at home – coupled to the 20% of patients receiving Peritoneal Dialysis that would represent a massive shift towards the home, and away from Hospital.
The gains to both patients and the NHS are considerable, yet only 2% of HD patients dialyse at home – in the view of the NKF this has to change, and it is why the NKF has established a working group to consider the case for more Home Dialysis – under the chairmanship of Lord Davies of Coity. Once this work is completed we expect to use the resulting report to persuade Trusts and clinicians that Home Dialysis options must be “on the table” for all suitable patients – as must pre-dialysis transplantation.
The NKF wants an end to the notorious cases of “that’s what we do here, that’s what you get” attitude.
The Organ Donation Task Force Report (published two year ago) promises a 50% increase in the numbers of Transplantation operations carried out each year by 2013. This very positive report resulted from preliminary work done by the NKF in conjunction with the All Party Parliamentary Kidney Group(APPKG). At a meeting of the APPKG we heard Elisabeth Buggins (chair of the Task Force) tell the meeting that those improvements were on course – the NKF welcomes that, however just in case, the NKF has joined a group “Transplant 2013” which will monitor progress and take real steps to ensure the targets are met. The NKF also continues to have the closest relationship possible with National Health Service Blood and Transplant (NHSBT) to ensure that with subjects like “Organ Allocation” the patient’s voice is heard.
Patients with Kidney Cancer are usually not suffering Chronic Kidney Disease (CKD), yet they are patients in need of support, advice and representation. The NKF tries to represent these patients in accordance with its constitution and this has meant continual submissions to NICE in order to ensure that as many Kidney Cancer drugs are made available to patients as is possible. It is ongoing work, as many of these drugs are still in development.
This report wishes to commend the work of the officers, Executive Committee and staff during the past year, however it is a matter of great sadness that our Secretary, Bob Smith died at Christmas – he will be missed. We were also sad to see the resignations of Executive Committee members Roger Ashelford and Jim Rae – however we thank them for their service and we wish them well. This report also wishes to thank officers and Executive Committee members who will be standing down at the 2010 AGM.
During the year, the Federation employed Jenny Wing as “head of fund raising”, however Jenny has now left this post and the position remains vacant. The NKF anticipates employing an Assistant Office Manager with effect from February 2010.
At the suggestion of Kirit Modi (Executive Committee member) he, together with a small working group, are putting together a one year development plan to compliment the five year Business plan that directs the Federations work. The Executive Committee have high hopes that this will prove to be an invaluable aid to the work of the committee.
The half yearly reported explained the difficulties facing the Federation by the “economic climate” and the poor performance of NKF investments. Steps were taken to reposition NKF assets in non-speculative locations and we are relieved to have stopped the losses – however it is concerning that we now have a much smaller investment income.
All Party Parliamentary Kidney Group
The APPKG (chaired by Dr Evan Harris MP, Janet dean MP and Lee Scott MP) of 175 MPs and Lords, continues to work for the good of Kidney patients with the NKF (in the shape of Tim Statham) supplying its secretariat. A General Election is pending, and this means that there is a need to ask candidates whether they support our cause ahead of the election, and whether they will join the APPKG if elected. We are now asking all patients and carers to approach all parliamentary candidates in their constituency with NKF supplied survey forms – if this job is done well our strength in parliament will be assured – if done badly, all kidney patients may suffer in the future.
World Kidney Day
The half yearly report covered the events of the 2009 WKD and we hope that 2010 will be even bigger. Apart from the KPA events, the NKF will have a display stand manned by our Advocacy Officers at a Parliamentary reception on the day itself.
The NKF continues to be indebted to its Industry Partners for the sponsorship and support they provide. They also have had a difficult year, and the NKF remains grateful that during their own difficulties, they have not forgotten us.
Kidney Life, Helpline, Advocacy, Website and Conference
These five activities are the NKF’s “coalface” where aspirations and ideas come head to head with the realities of life with kidney Disease, we are indebted to :-
Deborah Duval (KL Editor), Jane Oldfield and Pauline Pinkos (Helpline), Bob Dunn, Dennis Crane and Denis Cawdron (Advocacy Officers), Ken Petrie (webmaster), Barbara Morris (Conference)
Swine flu can have increased risk factors for CKD patients. Since its onset the NKF has done everything it can via KPA chairmen and the website to keep everyone informed of appropriate actions to take. More than 80 updates have been posted onto the website.
Young Persons Group
It is very clear to the Executive Committee that the needs of Young Kidney Patients are not being filled within the present structure of the NKF. The Committee have resolved to consider this matter at its MAY Away Day in depth, and then progress whatever new plan emerges to resolve this deficiency.
During the year it became possible to purchase goods or services from the NKF using Credit or Debit cards. This may be done by phone, by coupon or on the NKF website. The NKF hopes that by making this facility available to members, items and products will be more accessible, and events such as the NKF Conference will be regarded by members as more affordable.
I commend this report to you.