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Closing Speech - (full conference transcript)
(Click here to go back to the summary page for this speech).
Fred
Tring
Past Chairman and Past President of the NKF.
It has been my pleasure on my past occasions to open the Conference from the chair, this is the first time I have had the privilege of closing it.
The title of the talk I am supposed to be giving is: 'The History of the Federation'. If you think in 10 minutes that twenty-five years of the history of the Federation can be given, you have another think coming! Some snippets of my own involvement of the Federation are all I have time for. The Spring Edition of 'Kidney Life' with articles by David Benoliel and Margaret Jackson, excellent articles, both of them, in an excellent Journal, have given most of the details, as well of details of annual year by year happenings.
My introduction to the renal world came in February 1978 when my wife, Evelyn, was diagnosed with polycystic kidney disease after tests at the Churchill Hospital. The Consultant Nephrologist, Dr Des Oliver, was doing his ward rounds with student medics, ward sisters, nurses etc. He was explaining to his entourage that this lady was nearing end stage renal failure, would have a fistula operation, and shortly afterwards be on dialysis. In the middle of this dissertation he was rudely interrupted by the patient saying "Hey! It is me you are talking about, and should be talking to. I'm not sure any of these things are going to happen to me!".
I arrived in the ward to visit my wife whilst this was going on, in time to pour a little oil on troubled waters. That is my introduction to the kidney world and is someone influential in the formation of this Federation, Dr Des Oliver. Unfortunately, my wife after nine and a half years on dialysis, and a successful transplant operation with the kidney working died, because polycystic kidneys had abraded the aorta, to cause an aneurysm, which 24 hours after the operation decided to rupture.
The Federation was of course preceded by the founding 14 KPA's, of which Six Counties KPA was among the earliest to be formed. It was started up in 1968 by a chap called Harry Thomas, at the instigation of Dr Oliver, who had the foresight to realise the future impact that patient power has. Along with Brian Permain, founding chairman, and Ruth Lupton, founding secretary, Harry Thomas was the first member of the first Executive Committee. I was the next, following my election as chairman of Six Counties KPA in 1979, which encouraged me to stand for election to the Federation Executive Committee.
Des Oliver, a New Zealander, who as well as being an eminent nephrologist was a top flight Rugby Player, who played for the All Blacks on tour in England in that period, did much to encourage the formation of the Federation and chaired our first Conference at a School of Medicine Lecture Theatre in London in 1980. That Lecture Theatre only seated 50 delegates, of whom I was privileged to be one. Look how things have changed! How many are here today? Something like 400 I think. You already know about Brian Permain in forming the Federation, of the hard work put in by Ruth Lupton in lobbying KPA's to attend the inaugural meetings.
Ruth by the way was a Justice of the Peace, and was made Honorary Freeman of the town of Walingford in 1978. She died in 1983, and family and friends contributed a considerable sum of money at her Memorial Service, which was donated to the Federation. A sub committee of the Federation, chaired at that time by Brian Permain, was formed and decided that this money should be put aside for annual awards to patients and staff for special achievements during the year.
On his death in 1989, Brian's name was added to the title, making it the Lupton & Permian Awards. Sadly, due to I believe price costs having depleted the set aside funds, and selection of winners becoming an irksome chore; these awards were discontinued in 1998. A great pity I think! Should we not have some permanant record of our Founders? Perhaps a plaque suitably inscribed to cormerate the for sightedness and placed perhaps at Worksop Headquarters?
I was elected as Acting Chairman of the NFKPA as it was then known, the National Federation of Kidney Patients Associations. The title was changed in about 1992 or 1993, because Margaret Jackson, then the administrator of the organisation, got fed up with announcing herself 'The National Federation of Kidney Patients Associations'. So we shortened it to the National Kidney Federation.
At a meeting of the Executive Committee in May 1987, following the resignation of the Chairman and Vice Chairman, I was selected by the Executive Committee to take the chair. A bit of a shock I might tell you! Evelyn was still on dialysis at the time. She was not at all keen on me taking the chair, but I thought someone had to do it, so I did it for those 10 months as acting chairman, and the next three as officially elected chairman at the AGM. At that time the office was a room in Margaret and Barry Jackson's bungalow, it became obvious that we were fast out-growing available office space, with our filing system over flowing on shelves erected in the Jackson's garage.
So in 1989, we sent out an appeal letter to our KPA members, by then up to 40 from the original 14, for funds to enable us to rent or buy more spacious accommodation. With money created by the appeal, and dipping into accumulated funds, our Worksop HQ was purchased outright for a little over £35,000. I hope it is worth a little over that today. Worksop was chosen as the venue for two reasons; It was within striking distance of our only employee at that time; Margaret Jackson, and property in Worksop was a deal cheaper than I think it would be in London or any other major city.
Sir Michael McNair-Wilson, who was MP for Newbury, became a kidney patient at Churchill Hospital, Oxford.. I met up with him during a visit there. We were becoming better known as an organisation, and decided it would be a good idea to elect a president who created an improved entry into Parliament. Sir Michael was duly approached and agreed to stand for that office. He was most helpful in getting access to Ministers, and was the official opener of our new office accommodation at Worksop. He also helped to arrange a reception for us in a room off Westminster Hall, in part of the Houses of Parliament. Some 60 MP's attended. All was fine except for the fact the room had no running water, and necessitated carrying food and water and wine from a car outside to the upstairs reception area, which was quite a task, I can tell you!
The 10th Birthday of the Federation was celebrated at the Cavendish Hotel in London. We had a suitable brochure produced for it with a rather youthful photo of Edwina Currie and myself, including Ross Taylor, who has recently retired from being a surgeon at Newcastle. Edwina Currie was the Junior Health Minister at that time prior to her egg demise. She suggested that the function should be held to celebrate our 10th Anniversary, and invited some 50 odd patients including the Youngest and Oldest dialysis and transplant patients. Edwina made a point of chatting to all present and her department funded the hotel bill, which again I think is a bit of a tribute to Edwina. She was quite some lady!
In conversation with Margaret Jackson from time to time, we frequently discussed means of increasing the supply of donated organs. We felt that we were too small at that time to go it alone in a campaign to improve matters for donation. Although consistently promoting things like required request, which was a system that we would like to have introduced at that time for doctors or nurses in intensive care units to ask relatives if they would agree to donation. Unfortunately the medical profession and Members of Parliament would not do this.
When I was given the opportunity to chair a meeting of all other bodies interested in improving the supply of donated organs, I readily accepted this offer, and TIME (Transplants in Mind) was born in 1991. For the first few years of its life, the Secretariat was run by a PR company, and funded by Sandoz (now Novartis) the makers of ciclosporin, This was never a satisfactory arrangement, for whilst the PR company was excellent at issuing administrative paperwork, TIME was hamstrung financially, never having spare funds, or the independence necessary to promote the cause as it wished.
All this changed four years ago, when TIME obtains a Section Sixty-Four Grant from the Department of Health. This plus donations from charities has improved the function of TIME, now a registered charity in its own right. You the NKF support us financially, but your help in TIME's efforts to up organ donation rates comes in your assistance in giving your time as regional leaders for National Transplant Week and Donor Day. The waiting list for kidney transplants far outstrips those waiting for heart, liver, or heart and lung transplants. Mainly, of course, because liver and heart and lung people, if they do not get a transplant, they die, because they do not have dialysis or something like that to keep them alive.
With the advent of crash helmets, seatbelts, and improve performance of nephrologists in preventing the deaths of many stoke victims - all things we can only applaud - supply of organs from intensive care units has gone down. The refusal rate of next of kin at about 30 per cent remains stubbornly high. We have therefore to explore other means of improving donation rates, such as lobbying for opting out, the other system where if you do not want your organs taken you have to register, rather than at the moment if you are willing to have your organs taken to register. Elective ventilation, which, Neil McCauley asked a question about, is another option. I think the reason elective ventilation was not approved was that it was thought to be illegal to benefit someone other than the patient by medical means. In other words, if it was for their own good, fine, but to ventilate someone so it can benefit another person was thought not be legal. Another thing is to encourage more live donations etc. I still regard the improvement in donation rates as one of the most important functions of the NKF and the other interested members of TIME, because we get a lot more money from some other people, I might say.
I think I have to finish by paying tribute to all those, throughout the years, who have assisted in thus establishing the NKF as a strong and influential body. Continue to support your chairman and his successors in their efforts to improve the lot of renal patients, present and future. Never forget our old slogan 'Run by kidney patients for kidney patients'.
Mr Chairman, ladies and gentleman it is my duty to close this Conference.
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Conference
2003 - Council Meeting
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