I suppose one hope might be that this kind of biobanking research might actually then lead to more treatments?

Yes, yes. And I think that it’s obviously very important for the research that they get samples all the way through, and I’m sort of contributing at the one end with sort of blood samples and spinal fluid samples and so on, scans, but obviously to complete the loop it needs to be all the way through. And I suppose if I’m going to be really proactive about my disease I should be thinking about the ultimate step of donating after I’ve died, and brain and spinal cord. At the moment that’s something I don’t have to think about too closely just yet, but it seems that if you’ve started at one end you probably ought to think about sort of completing it at the other. But that’s something for the future.

And that is something that you can do? There is a scheme to—

Yes, yes.

–to take brains?

Yes, there is. I haven’t gone down the road of really investigating all the details of how it works, but I think that would be the sort of ultimate end to the biomarker study. And really it’s so important with, it’s such an orphan disease, really, that the understanding of what’s going on is still, you know, relatively early days. it’s not as if there’s something that’s going to drop off a pharmaceutical shelf next week. It would be lovely to think that a penicillin moment might occur, but I think I’m a realist, and it’s a complex disease, and it’s going to be a very complex pathway. And it’s going to be quite a long time before something really comes to fruition from it to effect, to provide really effective treatment for people with the condition.

And in the meantime the understanding of the disease is so important in order to be able to reach that stage, but if we can actually do something to reduce the length of time to diagnosis – which for me wasn’t so bad because I’m so slow in progression – but if you’ve spent, I think the average time is 14 months to diagnosis, and then you’ve only got another 14 months left to live, that’s an awful lot of time when you could have been sorting out your affairs, doing things you wanted to do, but also maybe having the one and only treatment that may be better if it’s started earlier. So I think there’s a very strong case for, you know, looking at biomarkers and providing samples in order that they can progress the understanding of the disease that much further.

I suppose it is just, it’s the horror factor of, you know, knowing that – but to be perfectly honest, as far as I’m concerned, when you’re dead you’re dead, and that really they can have – you know, does it really matter whether it’s a kidney or whether it’s, you know, brain tissue? I mean, brain tissue, my mum has got Alzheimer’s albeit, you know, quite mild. So I think that would probably sway me to sort of say, Well, yes And I think sometimes when you watch the adverts on the television, you know, about donating kidneys and other, you know, heart, whatever that it is very difficult because sometimes you sort of think, Oh no, I just don’t want to think about it But if you start thinking, Well, what if it was a member of my family that was on that waiting list, waiting for something You would be desperate for one to come up. So I think yes, I probably would. In answer to your question, yeah, I wouldn’t – I would probably be quite happy to give whatever.

At one point I was carrying a donor card for research purposes*. My view has changed, such that I wouldn’t now, and I wouldn’t donate my body parts to research. This links to my feeling that society ought to put its money into lower-tech issues rather than higher-tech issues. So we may be better off dealing with Alzheimer’s rather than solving it – putting money into care homes, supporting families – rather than into the research which allows, for instance, stem cells to be implanted into people’s brains. it’s enormously expensive. It may be worthwhile, but there is no end to it.

And you said you used to carry a donor card for research. Can you pinpoint things that have made you change your view? Or is it just kind of generally over time, re-thinking, maturing?

Yeah, no, I can’t. I think the, the point at which I carried a card was really not being precious about my own body organs, for instance, and not believing in an afterlife, or that my organs would affect it even if I did. That hasn’t changed. But what has changed is my view of medical research and its usefulness in the wider scheme of things.

* FOOTNOTE’ An animal rights campaign group used to produce a Humane Research Donor Card’ to raise awareness of their campaign to replace animal tissue in research with human tissue. The card is no longer available.

I have donated my brain to a brain bank in [county]. That’s… was surprisingly quite difficult to manage. Apparently it is useful, or will be useful, for my brain to be donated, but the – just to be a bit negative – the paperwork involved was awful. And it was written in, well, by – let’s be rude – by, if you like, a PhD student who put everything in medical terms, and I didn’t have a clue as to what many of the questions meant. And I took it along to my consultant neurologist, and he took one look and he couldn’t understand it either. Anyway we got a simplified form out of that and…

Was that the information leaflet or the consent form or?

It was a sort of questionnaire that went along with the… my request to donate my brain. But as I said, both I and the consultant were fairly appalled at the uselessness of the questionnaire.

So that was…………

But it was about – I can’t give you examples – but it was, would I mind giving’, if my brain was given to some – no, I can’t even think of the examples, but it was just put in language which was beyond me.

And that contrasts with your experience of the (Motor Neurone Disease study name) study?

Oh indeed, yes, and any other study I’ve taken part in. They’ve always been straightforward and easy to understand, and I mean this isn’t a research project and it’s just a matter of me donating my brain, but it’s speaking the obvious to say that if you can’t fill the form in, then what use is donating your brain? Well, you’ve got to make the, make life easy for people.

And is that an MND-specific brain bank, or other neurological conditions or?

I think it was other neurological conditions as well.

And so I think any brain tissues that can be donated, particularly from people with MND, would be well received.

Was that a difficult decision to make or – I mean, did you talk about it in the family or?

Yes. I haven’t gone to any great lengths to do so. I mean I talked it over with [name] – sorry, my wife. But again it’s a bit of a no-brainer, to use an odd colloquial term. If it’s going to help – well, obviously it won’t help me – but if it’s going to help other people then why not? And I’ve certainly no wish to be buried in a grave, I’m not religious, so if I’m going to be cremated they might as well have my brain beforehand.

Would that worry you if it were used by commercial companies, Drug companies or…?

As long as it’s being given by the National Health Service, no, it wouldn’t worry me. Because that’s how money goes into funding drugs, I guess, so no, it wouldn’t bother me. To be honest I don’t really, really mind what it’s used for. If it’s going to help somebody somewhere, in the same way as my thoughts on when I die, I think in my will I’ve actually written – I mean nobody will want it – but, you know, my body is to be used for medical research, if that’s what somebody wants to do with it. If somebody can benefit then that’s fine.

I’ve, again, volunteered to donate whatever may be useful. That is etched in my will, and my family are aware of all of that. And I have had that ongoing for some time now, so that will be part of some research one day. I can’t say what they would or would not want, but whatever they would like then it’s theirs.

And is that, that’s specifically for research you’ve specified, or for organ donation and things as well?

Well, both. I’ve donated whatever parts of my body are suitable for whatever they may be wanted for, so it’s a bit of both, organ donation, research.

I’m pretending I’m not mortal, as most of us try to do [laughs]. But, no, the times I think about it, I’m perfectly happy for them, you know – if I forget to do anything I hope my wife will say, Yes, take out all the bits you can and put them in somebody who needs them Occasionally, there was quite a big thing recently about donating your brains to the Alzheimer’s or sort of brain research. I mean I, it comes down to again this altruistic – I suspect more people would probably benefit if I gave all my working organs to living people. I mean, I’m not quite sure, I haven’t come to any decision on that. it’s something I contemplate, but it’s really quite an odd thing to think about. You know, what, what do I want happening after I’m dead? I mean, I again come back to my dad. I never understood all this fuss that came out – I know what they did at Alder Hey* wasn’t transparent, but I don’t think it was wrong. And all this thing about this incredible bureaucracy that was loaded on the NHS to track down body parts, to the extent now when, you know, I think if I’ve given my – I think I almost had to sign a consent form that they could take the biopsy. I’m not really sure on that. But you get the impression that any bit of your body they take, you have to sign a consent form or you can expect to ask for it back next year. So I’m afraid I was, I’m not hugely attached to my body and I hope nobody else will be after I’m dead, and certainly to the extent of lumbering a stretched NHS with extra costs just for a bit of… I mean, I trim my toenails and they go in the bin [laughs].

* FOOTNOTE’ Gareth is referring to the discovery that a pathologist at Alder Hey children’s hospital had been retaining organs without consent after post mortems in the 1980s and 1990s. The investigation into this case was one of the factors which led to the setting up of the Human Tissue Authority

What about donating organs after death? And I’m thinking about for research as opposed to for transplant.

That’s an interesting one, I think certainly, my husband and I have discussed donating organs for transplant and we recently discussed it because we got a leaflet for to consider whether we’d sign our son up to the transplant list or sign, sign him up to the national register. And so we had a discussion and we talked about that. And basically I think both of our views is we were on the same level that we didn’t have an objection to donating organs after our death for other use. But for medical purposes I don’t know. I mean, [sighs] if it was, I wouldn’t, I think [sighs] if I died and there was going to be an autopsy and I was going to be cut up anyway, I don’t think there would be any problem with donating something at that particular time. But if I was a whole body, I think to cut it up for that particular, I think that, that sort of fine line, that’s, that’s a funny, yeah.

Yes, if I’d been not going to have an autopsy then I don’t think that I would want them to cut me up specifically for that.

And are there any bits of you that you wouldn’t want to give for research, or anything that they can use you’d be happy with?

I’d be happy to have everything used, and as I said I’m thinking of donating my entire body. I do know of one person who didn’t want to donate his corneas and I didn’t understand that, so that helped me to realise that actually I’m happy to donate the lot. If you can use it, go ahead.

Let’s talk a little bit about the tissue and blood sample ones that you’ve been involved in, because that’s kind of different really, isn’t it? There’s no real prospect of personal benefit with those ones?

No, no that’s pure research and again I don’t have any problems with that at all. I don’t see why there’s even any fuss about it. I really don’t understand people when they get all precious about it, because I mean, if you’re dead, you’re dead, and it’s only a tissue sample for heaven’s sake. I mean, why worry about it? So I don’t have any problems at all.

Have you ever thought about whether you would give tissue or organs for research after you die?

I would willingly do that, actually, but I sort of haven’t thought about it since I was about 32 years old because, as I say, I nearly died of Hepatitis and nobody wanted to know about blood or anything after that. I think it might have changed a bit but – no, I don’t have a problem with that, I mean, what’s going to happen? I mean most people these days are cremated, so I mean what’s the difference between being cremated and allowing maybe your organs to be used. I wouldn’t like the indignity of being dissected in public like that German guy did recently, I thought that was terrible, yeah. I mean – and like used to happen with medical research perhaps when they robbed graves. But if you consent to it I don’t see a problem. An organ, specific organs I wouldn’t have a problem with.

Yes, because I think one of things is brains, that there’s a bit of a move to try to get more people to agree to allow their brains to be looked at because then they can build up more information about things like Parkinson’s and Alzheimer’s if they’ve got healthy brains and, you know.

Mmmm, do you know, I’d be quite happy to take part in something like that. I don’t see – again, for me once you’re dead you’re dead, I mean that’s it. it’s either burnt or it rots, one of the two, so I think if you can put it to good use. And I think we’ve all got it somewhere in us the survival of the species, deep down inside us, you know, there’s that, there’s that need to help the overall survival, which I think is what drives it all.

Would I donate my brain? Oh, gosh. I don’t know that I would. I have, I carry an organ donor card and I’m very happy for bits of my body to be transplanted if they’re of any use. Yes, I probably, I probably might. But I can’t say I’ve thought about it [laughs]. Perhaps I should do. Yes.

Well, I think that maybe the issue that they were trying to raise is that, you know, we, we have got quite a long way down the track with organ donation for –

Yes, yes, absolutely.

— for transplant, but not retention for research.

Yes, for research.

And maybe we need to get people to think about it more?

Yes, yes.

Because —

The one –

— I guess a lot of, you know, Alzheimer’s research and Parkinson’s and things –

Yes, absolutely, yes, yes.

— that’s something where they really need both healthy and unhealthy brains, as it were.

Yes, yes, yes. I think, the only thing I can think of where I think I don’t think I could do this and that’s, is to donate my body for medical students [laughs], which philosophically I think I shouldn’t worry about that, because whatever happens to you afterwards is not an issue. But I just have this feeling of it being scrutinised and I just… [laughs]. I don’t know. I don’t feel very comfortable with that [laughs].

Well, I guess it links to the point that you made way back about knowing that things are being treated with respect.

Yes, yes, I think so. And I certainly wouldn’t want to be that televised corpse that they dissected, that chap that did that on television, which I just think, Oh, I couldn’t I just, I don’t like that. So, yes, I guess a line can be drawn at some point [laughs]. But probably my brain, I would not be too concerned about that, unless my family had feelings that they didn’t want that to happen. But I see no reason why not. Yes, oh, yes, I think it is about respect. And it’s about the circumstances under which it would be used.

Yeah, purpose and all of that.

Yes. And I know medical students have to learn on real bodies. But, I don’t know [laughs]. Sensitivities creep in.

I’ve carried an organ donor card all my adult life and I’ve made sure that it was kept up-date regularly as well. And more recently I’ve been thinking about donating my body to medical science. I quite like the idea of having my joints harvested. I recently saw a programme on TV about how the medical students at one medical school hold a service of thanks [briefly tearful] – it’s so touching – hold a service of thanks every year for the families of those who have donated their bodies, and I just think that’s, that’s so touching, and it makes me even more inclined to do it. Yeah, I know that doctors and surgeons, they have to train somehow. I don’t have any plans for my body after my death, so if they can make use of it – 25’09 coming from an academic background myself, one of the things that I’ve realised is that when you get trainees who are being supervised that sometimes you get an even better level of care, because you get a young enthusiastic trainee who’s very interested in their work, and they’re being very carefully supervised by a more experienced person as well. And so I know that there, some people are suspicious about for example having a medical student involved in their care, but sometimes of course it can mean that you get an even better level of care.