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Patient presentation 4 - (full conference transcript)

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Austin Donohoe

When Ian asked me to speak, I hesitated so long that he got quite irritated with me. The reason was not so much the speaking, as many of you know I'm quite happy to speak, mostly longer than most people want. It really was about the subject - achievement - and I think that is in the eye of the beholder. So I thought what I might do for a few minutes is share with you what I have learnt. (if anything!) in the past ten years I have been in this patient malarkey. I was diagnosed with nephritis when I was 14 years old, quite a while ago now! I managed to stave off dialysis until I was 39 and I was on peritoneal dialysis then.

When I was transplanted on my 40th Birthday, some of my friends said at the time "They tried in vain to find a card that said " Happy 40th birthday and Happy Transplant". I have been involved in patient matters in one way or another for about 10 of 11 years. Firstly locally with the Tyneside Kidney Patient Association; Katherine Wright and I were involved with that for a number of years, Particularly Katherine. Then, with this beloved organisation, for six or seven years, then, with the Kidney Alliance, then more recently with the National Service Framework.

I do not really know how I got started on it? I think some of it would certainly be trying to give something back for the gift I received (kidney) but I suspect there was an element of being nosey! I had good treatment, in fact I am still receiving good treatment in Newcastle, and I assumed everyone did. I was astounded to find out that was not the case! I learnt about access rates, about equal provision, or lack of it, about disconnect systems, about bicarbonate, and I think I was a bit naïve. I was looking through some old papers the other day and I will just read to you a couple of things that I came across. This is from the National Kidney Federation sayings in 1985 when the much missed David Poulter and Frank Howarth here were joint chairmen. "The aim is for patients to have access to a comprehensive level of care which takes into account patients' medical and social needs". I'm sure that is familiar to many of us, because we could have the same aim today, I do not think much has changed in that regard.

Then again from a Kidney Alliance survey in 2000, over one in five PD patients are on PD because of exhaustion of haemodialysis facilities. Acceptance rates in Greater Manchester varied from 34 to 98 per million. Then, just last year, the National Kidney Research Foundation, commissioners and providers identified a lack of funding, space, facilities and staff as factors that constrained the choice of modality offered to patients. It seems to me the only thing that did not constrain choice was the commissioners themselves! There seems to be plenty of them! The whole renal thing reminds me of a cake. It's much bigger, as we have heard from a number of speakers today, than in 1992, but is still badly mixed and it is lumpy. You have to live in a specific place if you want to get all the ingredients! Some people already think the cake is too big, and are biting away at the edges. There are loads of cooks, but nobody seems to know the recipe? Least of all the Head Chef! So it seems to me the whole thing is a bit half-baked!

So what have I learnt if anything trudging around in the middle of this cake? Well the first thing is, it can be quite scary. Well, it was for me. I found very quickly that platitudes just do not do it. You have to educate yourself; you have to understand at least some of the issues. Just using the same phrases again and again, eventually it just turns people off. I remember when I was in the Kidney Alliance having an eyeball to eyeball confrontation with the past President of the Renal Association about the future of the direction of the Kidney Alliance, and this is a man who spent all of his adult life in renal services. It is something that stays with you, and it happened six or seven years ago, and is still with me. There are few if any facts, or at least few if any incontrovertible facts (someone else can always put a spin on it), and it just adds to fudge it out. If you take those access rates in Manchester I mentioned earlier, 34 in 1998,you might think this is outrageous? Three times the rate here, than there. Then someone say's "Well actually it is because the population there is much older, this population here are more prone to diabetes. This population here is Afro Caribbean five times more than there. Then suddenly what you think was a incontrovertible fact, becomes more controvertible.

There are no final victories, and there are no ultimate defeats. It is attrition. Personally I found this the hardest thing to take. I expected once the NKF, whether it was Frank, David or me or someone presented the facts as we knew them, everyone in power that was able to would say " Oh God! I realise what you are saying now, we will sort it out", but it was not like that. Not at all. I think as patients we need to take responsibility for our own health more, in every sense, we need to understand our own body, the illness and the options, and the medicines. We talk about choice, but we understand the choices that are available, I am not sure that we are really able to challenge what has been offered to us in an appropriate way. How many of us here today have challenged what the consultant has said to us? Or what's been written about the Renal Association? Or have we ever written to a Clinical Director? This is all our own responsibility; we have to educate ourselves as much as we can about our own illness.

When you get right down to it, it is all about money. Maybe not simply more money now, but of all the things that cannot be fixed now with money, they could have been fixed if money had been spent in the past in a good way. It is not a lesson I believe that has been well learnt. Ultimately we can only rely on each other. Most health staff can only go so far, they have enormous pressures on them, they have a system they have to deal with, they have jobs, and they have careers. This is not to denigrate anyone. Who amongst us would be any different with the boot on the other foot? All I would say is we need to recognise that a bit more than we do. The thing I have learnt most above all those, a take home message if you like, is that people listen to patients. I have dealt with three Governments, maybe four, seven or eight Ministers and three of four shed loads of officials. It is amazing what can be done when patients work together, particularly when they are working on a particular issue and they are all saying the same thing. It might be straightforward.you think, but it so rarely actual happens.

I remember the day vividly, that I was told I was going to go on dialysis. I already knew so the telling has an impact. I thought my life had ended, in fact a couple of times after that it almost did. It took me time to realise that life as I knew it had ended. Eventually I was offered new challenges, new experiences. Many of those were more fulfilling than the ones that I had in my old life, which seemed to be summed up like work, work, work, and then more work. My life now is more varied, it is richer and it is much more rewarding. Sadly not financially rewarding but you can't have everything! I suppose I have had a few successes, but I have also had a lot of setbacks. I have never stopped trying. Neither should any of us. We just don't know what's around the corner. Thank you very much!

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