They finally diagnosed it, he was pretty bad, they put him on a transplant list and I was completely devastated. I envisaged a man in a wheelchair or, you know, having a heart transplant or dying because they couldn’t find a heart but after fifteen years he recovered on the medication. Hes now on a very small maintenance dose of beta-blocker and something else for the rhythm. But generally hes gone on a long walk, started on Monday with friends along a canal Liverpool and hes been, he walked right across France [laughs] in four years in chunks and he can do twenty miles a day or more, so I think you could say he has recovered. I didn’t think it was possible so that’s been a bonus really mm.

I suppose those things in life kind of interrupt you know the PPI thing and

Yeah, yeah. In a way it, I was able to cope with that in a strange sort of way because I was Chairman at the time for, and I went on for another two years and I only missed one meeting. It helped me cope because it kind of took me away from it sometimes, so it wasn’t just always the full weight of his illness. I could escape into something that was equally absorbing so that I somehow managed to cope with it better. I can’t explain why but it, if I just didn’t have anything else I think I would have been really bowed down. I don’t think I would have managed at all. So yeah it’s been an amazing, amazing life, but I really think it is, it has been good for me doing that. I never envisaged doing it and it’s good that we can do it, you know.

No I don’t think so. I mean I like the interaction with people in the field. I like actually speaking to people who are doing the research and being involved with them and seeing their enthusiasm and being able to ask them questions directly I suppose and that opportunity comes because I get asked to, why I’m allowed to go to these conferences and things of the associations I belong to.

They often don’t realise or can’t believe that I’m not a doctor [laughs] or a scientist.

And in a way this has a, it’s a good and a bad thing because I’m kind of able to explain to the ordinary public or another patient some of the terminology and the concepts which I now take oh look at that magpie I now take for granted because when I see; I can remember being fazed by the first time I saw lesion. My God that sounds horrible. What is a lesion? [Laughs] And of course, you know, I have to stop myself from using that term because, you know, it’s a patch or an area of skin that’s affected by something. And it sounded really terrible to me, very serious a lesion, my God.

Oh do get involved, don’t be put off by , by thinking you’re not an expert or you’re not a doctor or whatever because your experience is valuable and important because otherwise the agenda’s being set entirely by the medicals and the scientifics. And really it’s about what, what’s good for patients in the end. They have to take that into account, it should be a really important part of decisions about research.

So I think generally that people should be more, they should not accept just on face value what they get told because often theres a hidden agenda, maybe not even purpose, on purpose, but it is there through the media or people selling stuff, you know want to sell it, not interested in whether it’s true what they say, the spin on everything. So to get to the real truth, you know, you need to get involved. And you find it rewarding actually. I found it amazing because you meet amazing people and you, you learn so much and lifes about learning I think. I can’t, you know, til my brain packs in I don’t think I [laughs], I really want to stop learning. So, though I’m cutting back clearly, and have cut back enormously on my involvement in PPI, I don’t think I will completely disappear because there are things I can do like peer reviewing and commenting, which I am signed up for in the NHS and other organisations and it keeps me abreast of what’s going on.

But it was really interesting because their idea that they developed and was that research questions should not just be left to researchers because in the end it was for the benefit of patients, all this research, it’s not for the researchers really [laughs]. They get pleasure at doing it and answering questions, but the patient benefit is what research is about. So I think the idea is that patients and clinicians together should decide which questions are important to be researched and I think that’s absolutely crucial. I mean I can’t see how else it could be done and I have already taken part in a prioritisation setting partnership, being on the steering group, and also the workshop day which was an amazing day for vitiligo, which turned up with eleven I think or even twelve we aimed for ten questions, top ten to be researched and as a result of that process which has been published in a journal so it’s out there, researchers can see it, patients can see it, well you know, mostly researchers. There are two or three initiatives going on. Ones already resulted in a pilot study using hand-held ultra violet light. And theres ah I can’t remember the word application! Theres an application for a full sized multi-centre trial in process. We don’t know yet, though it looks hopeful if well get that. So that would be huge, theres been absolutely no research to speak of in vitiligo in the UK.

So I went to the meeting and I joined the Cochrane Skin Group and as a result of that I got really into the whole research agenda because knowing as I did what there was or wasn’t out there published as, a studies, randomised trials for vitiligo, I didn’t think everybody knew that, not everybody who had, was a doctor or a scientist was involved in Cochrane. So I thought, ‘Well we ought to publish what’s there so that people know. And I said to, it was now Sir Iain Chalmers, on one of the trips they have congresses, or colloquia as they’re called, all over the world and this was in South Africa. And as a patient I got a stipend; you’re judged, you know you go to an interview and they gave, there were three of us and we went to South Africa to Cape Town absolutely amazing. And I sat next to Iain in a bus going to a wine region for a reception or something and I said, “You know, I’d really like to do a review.” “Yes of course you can,” he said. I’m not a scientist or a doctor.” He said, “Doesn’t matter. We can provide all those people as co-authors but you have the desire to do it and nobody else has, you can be the lead author.” And I looked at him as though he was mad of course [laughs] and then he said, “And when you’ve done it you’ll be an expert in vitiligo.” Which I laughed out loud actually [laughs].

But in one sense he wasn’t wrong because I’m not a scientist, I’m not a doctor but I know a lot about vitiligo, it’s what I do [laughs] and I think the other thing that I do, which came also from my experience as an academic librarian in the science, bio sciences, is what they used to call selective dissemination of information. So you’d know who all the academics were, or the lecturers and everything, and you’d know their interest and things would come in either journals or books and you’d think, ‘Ah Dr [doctor’s name] might like that; Ah so and so might like that.

* A systematic review is a compilation of all the high quality research on a particular topic. It may include a meta-analysis’, which involves collating the data from all the studies and conducting statistical analyses on them.

Yeah I got involved in health research quite a long time ago now, and this was because somebody I knew who was the, the Chief Executive of the Eczema Society thought I might be a suitable person to be on the partners council of NICE which was being set up because she knew I had an interest in research; partly my background as an academic librarian and being able to search the literature and teach the students how to do the searches for their projects. Got me into the whole scientific/medical research, I mean if you like, though I’m not a scientist myself [laughs] by any means. And that was amazing because it felt as though I, as a patient, was doing something positive and being able to contribute to the research and NICE was an exciting new thing that was coming into the government and I thought it was a good thing, and because evidence for treatments was important. So, so that was my, my first real foray into the research agenda.

On my own account I was doing research into what was happening in vitiligo because, again through my job, I was able to search the literature and I could see that there was absolutely nothing, though at the time I didn’t understand the difference between the types of studies and I would get very excited when I saw a study on vitiligo. And then I, you know, I learnt later through the people involved with the society on our medical council they were a medical and scientific panel they said, “Well you know, yes, but the study isn’t terribly good and one swallow doesn’t make a summer,” was a saying I’ll never forget actually [laughs]. And it’s been a gradual process understanding the quality of research and what things are worth taking note of because theres so much that isn’t really and so much quack stuff.

Well I think it’s important not to believe everything you read at, you know, they not take it at face value. I think also that site I mentioned earlier, the Behind the Headlines is good, though not everything gets on it, obviously they have to select the things they look at. But you just have to, we have the internet now and it’s for good and evil. I mean you can, you can actually be able to follow or get hold of information about things more easily than before, but I just think you need to ask a lot of questions really and not just think this is it, this miracle cure, I read it in the Daily Mail or whatever, you know, because not necessarily the case at all [laughs]. So mm I just think I’ll try and get somebody who’s authoritative or go to a good source of information and not just rely on the media entirely.

Go back to the main source or find out where the information came from and try and read it yourself and get somebody to explain it if they can, a doctor or somebody knowledgeable.