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Ian - Interview 16

Age at interview: 54
Age at diagnosis: 51
Brief Outline: Ian was diagnosed with Motor Neurone Disease just over two years ago, in 2008. He has taken part in several research studies, including a biobank study which aims to improve the diagnosis and understanding of MND.
Background: Ian is an insurance consultant. He is married with two children aged 21 and 17. Ethnic background/nationality' White English.

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Ian was diagnosed with Motor Neurone Disease (MND) in 2008, just over two years ago. After he was diagnosed he was referred to a university hospital clinic, where the staff are actively involved in a number of research projects. He was very impressed with the care, time and attention he was given, and also with their honesty about the fact that MND is poorly understood and the need for more research. He was very keen to help research in any way he could, provided it did not involve anything that would cause pain. 

 
Ian is currently taking part in a study which involves giving regular blood samples, as well as taking part in MRI scans and various tests of brain function. The study aims to look for biomarkers – particular characteristics of the samples – which can help explain why the disease progresses differently in different groups of people, and may also help provide a diagnostic test for MND. Some people in the study are also giving spinal fluid samples through lumbar punctures, but Ian was able to opt out of this part of the study. His wife also volunteered as a healthy person to be part of the control group, against which samples from people with the condition can be compared. She was willing to have a go at the lumbar puncture, but in the end found it too painful so the team stopped the procedure immediately. 
 
Ian feels the staff have been exemplary in explaining the research and giving feedback, and he really appreciates the feeling that he is contributing as part of the team. He has been sent photographs of his MRI scans, and has been told about articles the researchers have written using his data. He has also volunteered for two interview studies (including this one) and feels he can trust the universities involved. There was just one study from which he withdrew, which was a postal questionnaire from university in another part of the country. He felt it was too impersonal, and feels happier giving his time to a research team that he has met face-to-face and built up a trusting relationship with.
 
He is a great supporter of all kinds of medical research, provided it is well regulated and does not involve unnecessary cruelty.
 
 

A few weeks after a diagnosis of Motor Neurone Disease, Ian’s care team asked if he’d consider...

A few weeks after a diagnosis of Motor Neurone Disease, Ian’s care team asked if he’d consider...

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After that, a member of their team did contact me about - I think I gave them the feeling that I was willing to talk about my, my issues, I was willing to share my experience. And they gave us a bit of space while, obviously, we took it all in and broke all our news and did everything we wanted to. But probably about four or five weeks after I’d been there, they made contact and said, “How would you feel if we spoke to you about doing certain things?” And then they sent a lot of information in the post to us to read. They gave us websites to look at, but it was never pushy. It was always down to us to, to get back to them. There were some questionnaires that came through from some other areas, people that we hadn’t dealt with directly. I think there’s a research group in Liverpool that were quite keen to get some data from me. We did participate with that to start off with, but we dropped that fairly quickly because we felt the team that we’d got involved in in[city] , if we had time, then it was their time. It wasn’t time for other people. 
 

Ian was also pleased that being in the research project led to greater family involvement in his...

Ian was also pleased that being in the research project led to greater family involvement in his...

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Absolutely, and another comforting thing is the fact that they wanted the family to be involved. You know, it wasn’t just my problem. I live in a family unit. I’m part of a day-to-day process, and the family should be as part of this as myself just being there on my own. So some of the things we’ve done, my wife has got involved in, some of the clinics we’ve attended, we’ve taken my daughter too, because she’s wanted to ask questions and understand it. So my son hasn’t so far. He’s sort of rather pushed it aside and just feeds on the information he gets from home.
 
But the group at [city] have been great. They, they’re willing to talk to anybody and involve anybody and so, you know, it’s nice to be able to give something back.
 

Ian felt that having access to a team of specialists who were studying MND was a benefit of...

Ian felt that having access to a team of specialists who were studying MND was a benefit of...

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Yes, they were very, very honest from the very first conversation we had with them. They are a medical research team that are working within a hospital to a) look at your own sort of personal health situation now, but take data and information beyond that to help them with their research. Yeah, they were very open about these things. I mean they explained to us that they were involved in the Medical Research Council. They explained to us that they worked within the NHS because that was the best way that they could keep up their medical practice, whatever the right word is, but as doctors. Yeah, no, they were absolutely honest about everything. And very truthful about, you know, how MND was a very difficult illness to research, and they were very honest about the lack of knowledge they had on it. Yeah, no, they were, they were excellent and I can’t fault the team at all.
 
I mean, one of the things I think for people taking part in medical research is often the fact that they feel they’re getting sort of almost extra-special care because they’re working with this team that’s right at the forefront of what they’re doing. Was that something you felt?
 
Right Yes, I suppose I did in a way. I mean, when we went the first time they didn’t actually say to us, “We’ve got all these different research programmes going on. We’d like you to join them.” They were very honest with us and said, “Look, as time goes by, would you have any problem if we made contact with you about things that we do outside the clinic?” And it was done very well. And every time they asked a question they always made it quite clear that if it was something I was uncomfortable with, if I said, “No” it was never going to be a problem. And likewise if I went ahead with anything and I wanted to stop it, it would never be a problem. It would never do any harm to my situation, and they would fully understand.
 

Ian hopes no member of his family will develop MND in the future, but is happy knowing his...

Ian hopes no member of his family will develop MND in the future, but is happy knowing his...

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Do you have any worries, I know sometimes people are a bit worried about where their data may end up in terms of sort of privacy and security. Has that been an issue for you?
 
From a medical point of view, no, no. I mean I’m just another human being in this world who - I mean the human body is a very complicated thing isn’t it? I mean for us to live the number of years we do without more breakdowns is quite incredible. So one expects that a certain percentage of the population are going to struggle with illnesses at some stage in their life. And we all know cancer can hit people, and huge funding goes into cancer, etcetera etcetera. But no, I’m, I’ve got a disease which is not so common. I’m more than happy for anyone who’s interested in finding a cure for it getting involved with me. And, you know, my data is not for sale. It’s there to help create some sort of miracle in the future. And it could be that just round the corner there it’s going to be something simple. We just don’t know, do we?
 
Yeah, but I guess in your case, as often in biobanking studies, you’re not particularly expecting the research to lead to something that will benefit you yourself?
 
No, if it does, fantastic, but if it’s there for someone in the future that’s very important. And one has to be realistic and, you know, it could be another member of my family that gets hit in the future, and I don’t want them to go through the same situation I’m going through. So if I can benefit them in some way, wonderful.
 

Ian was worried a lumbar puncture to take a spinal fluid sample would hurt. The researchers were...

Ian was worried a lumbar puncture to take a spinal fluid sample would hurt. The researchers were...

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And have you actually had a lumbar puncture in the past?
 
No.
 
Right.
 
No, I’ve played sport and I’ve damaged my back. To a smaller effect, I know how painful working on the back can be. It’s just one of those areas of the body where I’m a bit funny about. So and unfortunately I watch ‘House’ and they’re always doing lumbar punctures on ‘House’ so no, I know what it’s all about and if there if there was a better way of getting into the spinal fluids then I would consider it. But yeah, I mean, I rely on sitting up and being comfortable and I don’t really want the discomfort of that taking place as well.
 
And the team weren’t at all worried—
 
Not at all.
 
--that it would affect the study or?
 
Absolutely not. The minute I showed any concern about it they dropped it. They made it absolutely clear that we were all there to help one another and if there’s any aspect of the testing that I was uncomfortable with then they wouldn’t even go there. So I don’t mind needles being stuck in me and having blood taken out. I don’t mind anything else. It was just that one area of the body I just didn’t want them to touch.
 

Ian, who has MND, chooses not to participate in research that may cause him pain.

Ian, who has MND, chooses not to participate in research that may cause him pain.

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But my other view was that if I could help others I had nothing to lose, so this is how I got involved in offering my services to research. I was fairly particular about it, in that I was happy to do any research, I was happy to give any samples, sit in machines, have MRIs, anything that was required, but the one thing I was against was having to go through any pain barrier, unnecessary pain barrier. So the one thing that I’ve eliminated from any research is things like lumbar puncture, but otherwise here I am and happy to discuss things with people, talk about my experiences, and anything else that medical research wants, I’m there for them.
 

Ian’s wife took part in a study about MND as a healthy volunteer. She was willing to have a...

Ian’s wife took part in a study about MND as a healthy volunteer. She was willing to have a...

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Right, well, on the first occasion when we were approached about giving blood samples and doing MRIs and things, they were looking for healthy people to take part as well. So we decided that as a couple we would take part. She was very happy to do that. She actually went further than I did. She was prepared to let them try the lumbar puncture process but, unfortunately there was a difficulty so it didn’t, ended up not happening. They did try, but she was uncomfortable so - and, again, you see, that’s evidences to the caring of the team. They tried to take a sample from her. They realised that she was in discomfort and immediately stopped it, so you know, that gives you confidence to do things going along. But so the first time I went [wife] did exactly the same tests that I did.
 

Ian, who has MND, had an MRI scan as part of a study to understand brain function.

Ian, who has MND, had an MRI scan as part of a study to understand brain function.

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When you go in the MRI - you know, it’s not everyone’s favourite thing to go in the tunnel - absolutely no issues. They talk to you the whole time, make you feel comfortable, explain to you what the tests are about. That is so important that you understand why they’re doing things. They’re not, you know, you’re not just there, “Well, we’re going to do this, but we’re not going to tell you why.” It’s the complete opposite. “We’re going to do this test because we want to find out the relationship between your sight and your brain” or “We’re going to do this test because we want to test why the right side of the brain is not talking to the left side of the brain”, or “why there are, why MND crosses over the right and the left.” All that sort of thing was explained to me. It was, it was very, very interesting. 
 

As long as the data is not abused, Ian is happy for it to be shared with commercial companies....

As long as the data is not abused, Ian is happy for it to be shared with commercial companies....

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And if the sharing were with private organisations like, say, pharmaceutical companies, would you be equally happy for that kind of use?
 
As long as it’s not being abused, absolutely, absolutely. And I know abuse is something that we have to put up with in this day and age, but for something as complicated as this I, I would back it all the way. And, again, trust in the group that you’re working with and knowing who, that they’re going to give it to the right people, that would give me absolute confidence that if pharmaceutical companies were being involved they were doing it for the right reason.
 
And we all know cancer can hit people, and huge funding goes into cancer, etcetera etcetera. But no, I’m, I’ve got a disease which is not so common. I’m more than happy for anyone who’s interested in finding a cure for it getting involved with me. And, you know, my data is not for sale. It’s there to help create some sort of miracle in the future. And it could be that just round the corner there it’s going to be something simple. We just don’t know, do we?
 

Ian doesn’t mind sharing personal information if he trusts the person he is talking to. He...

Ian doesn’t mind sharing personal information if he trusts the person he is talking to. He...

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But it was just the whole reassurance that “There’s a team here. We want to work with you, and as time goes by, there’s going to be lots of questions, there’s going to be lots of things that we’ll ask you, you’ll want to ask us. Maybe your family want to get involved with us about it. We’re here to help, and nothing will be too much for us.” And I had to say they’ve been good to their word. I mean, everything over the period of time, two and a half years now, anything that we’ve had a question about they, if they couldn’t answer it, they’ve come back to us. Otherwise they’d have been at the end of the phone to work with us.
 
And again, they were faces we knew. It wasn’t a brown envelope coming in the post with lots of paper, “Could you please fill this in?” It was, “Please come and join us and we’ll take it from there.”
 
That’s interesting, so that level of personal sort of affiliation to the team was actually quite important.
 
I think it was very important.
 
Because I like to see a face at the end, that I’m dealing with, you know. Someone can ring you up and they can sound nice on the phone, and they can turn out to maybe be not so nice. So when you get to know someone and you feel that you’ve got their trust, then I think it’s much easier to be open and willing to answer questions and to do things. And some, a lot of the questions I’ve been asked and a lot of the things I’ve got involved in have been very personal. But I haven’t, I don’t mind sharing those issues if I trust the person that I’m discussing it with.
 

Ian felt it was nice to be thanked and given feedback without needing to ask for it.

Ian felt it was nice to be thanked and given feedback without needing to ask for it.

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Do you get feedback from the team about how the research is going and how, what results they’re getting?
 
I do, yes, and very good feedback. In fact, we’ve had some very strong feedback from some of the tests that have been going on, particularly around some of the investigation in how the brain works. And I know there’s been a big breakthrough, as far as the research is going, in finding out more about how the right and the left side of the brain communicate. And that’s all come back to, you know, we’ve been told about it. I mean, silly little thing like being sent photographs of my own brain, “Would you like to see what it looks like? And, by the way, you were one of twenty-five people that came, helped us with this data, that’s now led us to be able to put an article together and put it forward. And again, by doing that it gives us more of a chance with the medical research funding us with further things going forward.” Now all that things, all those things have been explained to us, websites to have a look at and see where this research is being discussed. I don’t necessarily spend all day going through those websites and having a look at, and finding out for myself. I do occasionally out of curiosity. But just with the very knowledge that we’re being told that it’s useful, and it’s leading to better things. Last time I went for the MRI there were two extra scans that were done – “You will you be in the in the scanner a bit longer than you were last time because we want to perform two extra things.” So, you know, just having that knowledge is very good.
 
And that’s feedback that they give you unsolicited rather than you having to ask?
 
I don’t have to ask for it. And whenever they give us this feedback they even ask us if we want more information. You know, “Feel free to” - and normally after every visit I get a thank you letter, and a bit of very, very brief paragraph on what’s going to happen in the future, and “Are you happy to come back again, say, in six months time?” or whatever. So no, I’ve got no issues whatsoever with them. They’ve been great with communicating what they’re doing and how it’s going. 
 

Ian wants future generations of patients with Motor Neurone Disease to benefit from advances in...

Ian wants future generations of patients with Motor Neurone Disease to benefit from advances in...

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And the ultimate thing is cancer, you look at cancer. Cancer’s come a huge way, a long, long way. There are still many people dying of cancer but there are many more people that are still surviving it now. Why can’t that happen with MND at some stage in the future? And if we don’t allow the medical profession to make this research and undertake experiments on us as, you know, human beings, we’re never going to find out, are we? So I’m, I’m a great believer that we give them as much time as possible. Yes, we don’t want it to get too much that you can’t go out and enjoy life as well, but they’ve never, ever been like that. You know, it’s from time to time, “Can you come and visit us? Can you give us a day and do things we want to do with you?” “Yeah, do it. Great.” And have lunch on them [laughs].
 

Ian wanted to take part as a way of repaying staff for the times they had “lifted” him when he...

Ian wanted to take part as a way of repaying staff for the times they had “lifted” him when he...

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Well, my message to other people is that you’ve got to learn to build trust with the people that you’re working with in the medical profession, and if you’ve got that trust, then go with them. You know, work with them and have the confidence of, of believing them and sharing and just doing everything they want I think a lot of people might be scared. Others may be very down and depressed because of the situation they’re in, and I fully understand that. I mean, I’ve had moments where you feel depression maybe coming on, but luckily, I’ve felt that I’ve had the strength to overcome that. But again, I’ve overcome that because I’ve been lucky that the medical teams that we’ve had around us who have always been there to lift us. And if they’re prepared to do that, well then I’m prepared to give them any time they want.
 

Ian wanted to encourage the staff to keep researching. The doctors carrying out the research have...

Ian wanted to encourage the staff to keep researching. The doctors carrying out the research have...

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Keep the good work going, yeah. You know, I like the way that I’ve been respected, and I like the way that I’ve been handled and spoken to, and above all else, the truth that comes from them. The, you know, the reality of what’s ahead of you. Yes, it’s a horrible thing. MND is horrible, and, you know, we can’t hide that. But I think the medical profession, the way they’ve been with me, has been fantastic, and if they can be like that with everyone then they’ve got a great chance in the future of being successful.
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