Different, from the patient’s perspective of health. You can say that from a medical point of view, health is objective. It is based on evidence, you can measure it, you can put it into figures. “Doctor, how is my father doing today?” “Well his blood pressure is a little lower than yesterday.” From that point of view, from a medical point of view you always try to seek objective points to define health, like blood pressure, blood levels, temperature, anything. We had a discussion this morning about creatinine levels. That is the medical point of view. Facts and figures, objective criteria, well, we all know from the experience and the perspective of the patients, health is much more subjective. It is related to other things that you cannot measure so easily, but are very important, like health, family, work, independence. From the perspective of the patient health is much more connected to social life, and I speak deliberately about perspective because, it is not about who is right and wrong. I am just saying that there is a difference, a different perspective between looking at health, healthcare, treatment, from the medical perspective and from the patient perspective.

We have to realise that our ideas, needs and expectations find their source and their roots in the way we define life, in the way we look at life, in our perspective on life. So what patients really expect from healthcare, and healthcare professionals, is much more linked to their daily lives than it is to medical criteria. Realising that will lead, I hope, to healthcare professionals to understand that if they want to support patients, they have to take the expectations, the perspective of the patient into account. Patients have to realise that they are the only ones to have the real knowledge about their daily lives. About what is really important to them, what is really important to us. Again, we are the experts!

So there are two perspectives, but I am sure that we all know that one of them, the medical, technical perspective, is quite dominant in our, lets say Western, society. That is quite understandable, because when we talk about renal replacement therapy, about dialysis and transplantation, we have to realise that they are relatively new therapies; we all know that they developed in the late 60’s, beginning of the 70’s of the last century. For example for someone like me, I was quite fortunate that I was not born a couple of years earlier, because when I was 15 years old and I had to go on dialysis; it was only a couple of years after dialysis for children was available. It was not even available in Amsterdam. In my hometown, I had to travel by taxi to another town to the children’s hospital to receive treatment a couple of times a week. I was lucky that I was treated, because for young people and all the people, even by the end of the 70’s dialysis was not available, and they died. So it is a relatively a young therapy.

What you see happening is that of course in those first few years all the efforts were aimed at preventing people from dying. So that was the main focus. The medical, technical side was the main theme, not only for healthcare professionals, but of course for patients and their families. When kidney replacement therapy later on became more common and widespread, then doctors, nurses and patients and families began to realise that staying alive alone was not enough. The dialysis treatment was considered to be a heavy burden on the patient and their relatives. So it was clear that more focus on the social and physiological implications of the therapy was necessary.

So you see this evolution from a healthcare offer of medical help to a healthcare that offers, so to speak, a total package. This moves from a medical focus to a focus that is much wider. Now the problem is a little bit, when the professionals of course with very good intentions, no question about it, but when they try to fill up the gap and try to offer us patients help, they will often try to do this of course from their perspective, and that may lead to problems. I give an example; some years ago already, I read an article, it was not a bad article, it was an article about living with ESRF. It was written by a scientist, a healthcare professional, and he had the following conclusion; the conclusion was, that health professionals, nurses, doctors, etc and I quote “Have to deal with vulnerable people, health professionals have to deal with vulnerable people.” Well ladies and gentleman I do not agree! I think health professionals have to deal with normal people in a very vulnerable situation. That is different.

I have said it many times before and I will say it over and over again wherever I get the chance. Kidney patients are not abnormal people! We are normal people in an abnormal situation. That is different, that is very different in my opinion. That is what I call the patient perspective. Understanding that we are not abnormal, but the situation is abnormal. Understanding that means that health professionals have to listen more to the patients and the organisations to understand what the abnormal situation is about. That they can support us better, they can offer better care. Let me give you an example from my own experience about the difference between the patient perspective and the medical one. On January 5th 1978, my first dialysis was planned. I was 15 years old and I was told that I had to go by taxi to another town.

When I arrived there the first day, everybody was there to take care of me, because I think somebody had a thought that his first day of dialysis for a child was a potentially very traumatic moment. So everybody was there for me, the doctor of course, the schoolteacher, social worker, nurses. Everybody was there, very kind to me with very good intentions. Now I was very anxious and nervous too. Not about the dialysis, but I knew they were going to stick the big needles into my new shunt. That was my worry! Within a few minutes that were done, it didn’t hurt so much, the blood went through the machine, and I was pretty much all right when they were in. Though everybody was there for me, I really needed them all there a couple of months earlier, when the word dialysis came up for the first time. Or a couple of months later, when I was used to the regime of dialysis and I was lying there, but really had questions on what is going to happen now. How is my life going to be? There was no one there for me at that time. Now this may well be the difference in defining care from the insider’s view, that’s what social science calls the patient perspective, the insider’s view. Or the outsider’s view.

Defining care organising care is also about defining what I call critical moments, moments that you have to be there, as a carer. How to respond to these moments, or to anticipate them. It maybe very likely that patients define different moments than health professionals. So then patients get support perhaps, at moments that they don’t need it most. They might have no support at the moments they feel they need it. This is exactly why patients’ associations are so important, if we say that healthcare should be more and more organised based on the perspective of the patient on what we find important. It is my belief that we as patients also have a big responsibility there. We have to make clear what our expectations are; we have to make clear what we want. We have to make clear what we need, and when we need it. It can be done of course on an individual level. But when we talk about organising care, then it is very important of course to unite, we need to gather all the individual experiences, bring them together in to a patient association and we have to base our policy on those experiences.

In Holland for example, we are involved in the long term planning of dialysis capacity. You can look at what we heard this morning from your Minister, from a financial perspective, because that’s what the Governments does. That’s what health insurance people do. You can also look at it from a provider point of view, hospitals do that. From a medical point of view, that’s what nephrologists do. But you also have to take into account the needs and the expectations of patients, and there was a question this morning about home haemodialysis, that’s exactly from the patient’s perspective. Very important! That’s what we as patient associations have to bring in. We do it in Holland literally. We are at the same table, we present the patient view, and they present their view. We try to make the planning for dialysis capacity together. It is not always easy I can tell you. It is a fight sometimes. It can be done and it works. It gives us as patients a big task and a big responsibility. Don’t forget it is also an extra task for doctors to step away from their daily practice and think about something about the planning of dialysis. There is no difference.

Same with the quality of dialysis, I am a member of a committee in Holland that defines the standards of good quality of dialysis centres. Of course I’ll bring you the patient point of view. It gets a place in the standards and if dialysis centres want a quality certificate, they need to comply with it. So that is the strength of patient associations. Collecting the experiences of patients and bringing the patient perspective to the organisation of care. Care will be improved when it is more and more based on the real needs and expectations of patients, that is my firm belief.

Of course this is important on a local level and also on a national level. I know how much Tim Statham and the NKF put into this work, and know how difficult it is. I know how your NKF succeeds on a national level in raising awareness for kidney patients and raising awareness from the patient point of view for many.

Ladies and gentleman, the world gets tougher, solidarity is no longer obvious, there is pressure on finance. There is pressure for quality. There is a tendency all over Europe where governments take a step back and leave it to what they call the field to organise society and also to organise healthcare. Most of the time not with enough money, so it is the elderly, it’s the people who are less fortunate, it is the chronically ill that will suffer most from this if they don’t unite. If they don’t combine forces so to speak. It may sound a little bit old fashioned, but we are truly stronger together than we are one by one. The same story of course goes for Europe. Europe as a decision-making concept I call it, gets more and more important. More and more decisions are made on a European level and they have direct influence on individual kidney patients in countries. Whether we like it or not, Europe gets more and more important. So apart from the importance of having strong patient associations on local, regional and national level. We as patients also need to unite on a European level. Fortunately we already do so, since 1981 when CEAPIR was founded.

CEAPIR European Kidney Patients Association Federation and have course this is the sticky part of my speech, because now you want to know what CEAPIR stands for. Well, it is a Latin phrase. If you just remember the European Kidney Patients’ Federation that we do. More important is what we are and what we do for kidney patients in Europe. First of all CEAPIR is quite a big Federation, we have about 300,000 kidney patients in Europe and more than 20 National Kidney Patient Associations are members of this Federation. Delegates get together once every year for what we call General Assembly in different hosting countries. In 2001 we were in Hungary, 2002 in Amsterdam, 2003 we were in Ireland and this year in May we were in Croatia. You can imagine that these general assemblies are very impressive with so many fellow patients and fellow patient organisations working so hard for kidney patients all over Europe. It is also very inspiring and very interesting, we all learn so much in one weekend because we share our experiences. We share our knowledge. Apart from the General Assembly there is an Executive Committee. CEAPIR is a voluntary organisation and the Committee has five chosen members. Knud Erben in the front row here is President, Knud is from Germany and he is among us. So is Mark Murphy, Treasurer, he is from Ireland and Tim Statham from the NKF he is my fellow Vice President. Anyway we work hard to represent the patient perspective in Europe. The main task as I say is collecting the knowledge we have as kidney associations and share it, and so we do not have to re-invent the wheel.

What more do we do? Just to give you a very quick impression. We want ESRF higher on the list of the European agenda, that is very important, that’s where the decisions in the future will be made. We are starting to work on establishing a European quality standard in the treatment of ESRF, of course from the patient perspective and what we would really like is some kind of benchmark, so you can see where other countries might do better than your country and you can go to politicians in your own country and try to improve. We want to co-operate, exchange information and bodies also involved in renal therapy and of course we want to improve organ donation and transplantation. We want to do a lot more; we have to do a lot more. There is much work done already, but there is of course a lot of work still to be done.

Ladies and gentleman, it will not surprise you that it is my strong belief that kidney patients must unite, we must share our experience and knowledge as I call it. Kidney patient associations really matter. We work together already as patient associations on crucial matters, we work together with health professionals and with governments and we sometimes disagree, it will not surprise you. Must of the time we succeed in bringing in the patient perspective into the discussion. Please keep on supporting your local regional group if you can. Don’t forget it is extremely important also on a national level to join forces and know that on European level within CEAPIR are working hard too. They are working hard with one thing in mind and that is the well-being of kidney patients and their families.

Ladies and gentleman, if you will let me, I would like to conclude with some personal remarks, and take the opportunity to finish off with personal wishes and thoughts.

To the people of the NKF I wish you strength and success in the important work that you do in this country for kidney patients, Tim Statham, staff, executive committee and all the volunteers keep up the good work because it is so necessary perhaps these days than before. To all health professionals in nephrology, nephrologists, nurses, social workers, technicians, I know it is not easy to live up to the expectations of kidney patients. Probably easier to stand here and tell you should do so than by doing it day by day. It is a tough job, but we as patients need your knowledge, but most all we need you as caring human beings beside us. Thanks for all you hard work Then finally for kidney patients. Dear friends, I truly wish that although life may not be easy to live - that might be an understatement - I know life can be tough sometimes. I truly wish you and your family all the strength you need and besides that, the ability to enjoy the good things that still remain, and I wish everyone waiting for a transplant the same luck I had 22 years ago. And may your dreams come true as mine did. Thanks!

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