Ian

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. His ethnic background is White English.

More about me...

Ian was diagnosed with motor neurone disease (MND) in 2008. 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.

Interview conducted in 2010.

Ian had blood samples taken as part of a motor neurone disease (MND) study. He isn’t certain how the researchers will use these samples to meet their research aims but feels okay about this.

Probably a little more vague on the blood samples, because I think they’re still struggling to understand how they’re going to use them. But yeah, very open about the fact, “You will be part of a blood bank and we may use them, we may actually share them with other people. Do you have any problem with that?” No, I don’t, you know. It may not be so accurate on, “this blood test will do this and this blood test will do that” but as they went along, they, if they took four, five, six phials of blood they would sort of tell me roughly why they were going to use them.

Ian, who has been diagnosed with motor neurone disease (MND), is happy to take part in most medical research apart from anything is likely to cause him pain.

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 wishes there could be more sharing of data and knowledge with researchers in different countries.

And I asked on the last visit what they were doing with our blood samples, and etcetera etcetera and they were very open in saying, well, one of the big things is they’d really like to share the samples they’re getting from the UK group with more worldwide groups, particularly in the USA. But some of the issues around importing and exporting blood were stalling these things, and therefore there was difficulty getting blood samples into the USA and out of it.

 

And of course, there’s a lot of research going in the USA for MND as well. And it sort of opened up other questions about how crazy this world is, you know. We live in a global, a very open global society now, where communication travels in seconds, and yet someone somewhere else in the world might have some information on an illness and it’s very difficult for them to share it with another area of the world that’s got different information that could lead to some breakthrough, you know, medical phenomenon. You just don’t know. And I, I just found it very, very sad that when it comes to medical research, the world is still very much down to communities as opposed to globalisation.

Since being diagnosed with motor neurone disease (MND), Ian has been going for a day of tests with the research study team every six months. He is impressed by how the researchers made him feel “part of the team that are researching the issue.”

And then the really, the bigger one, was when we were approached by the team at [city] to get involved with their, I think it’s called [name of study removed], which is looking at the brain, blood samples, answering intelligent questions, basically spending a day with them every six months going through a routine of tests, questions, eye tests, all that sort of thing. And when we went there the first time everything was clearly explained to us and laid out to us and, you know, it’s been great working with the team, because you feel, they make you feel as though you’re part of the team that are researching the issue. You’re not a guinea pig that’s in a, you know, “We’re going to put you in a hutch for the day and treat you like someone that, you know, we’re going to come and visit every now and again and put a pin in you and take some blood” and etcetera etcetera. It was, “Yeah, you’ll be with us for the day. We’ll have lunch with you”. You know, everything was done nicely, very, very nicely.

The health professionals Ian saw after he was diagnosed with motor neurone disease (MND) were also running research.

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 liked that the study team explained why they were doing certain tests which helped him to understand and made it interesting.

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 [motor neurone disease] crosses over the right and the left”. All that sort of thing was explained to me. It was-, it was very, very interesting.

Ian often asks the researchers at study visit appointments about their work and what they are finding out. He has learnt about advances that he would otherwise not know about.

I think there are two sides of it. Can we find out about MND [motor neurone disease] in someone at an earlier stage? And, of course, is there a cure? That’s got to be the ultimate. Or is there something that can stop it from spreading so quickly or happening so quickly? I mean they, one of the things that I found very interesting was when they compared MND with polio. Now, that’s something that I wouldn’t have found out without talking to the team about, and they were explaining that they’ve looked at people with polio, and polio tends to affect either a right or a left hand side of the body. Whereas MND crosses from the right and left and it can hit any, any limb at any time, and they don’t know why. So trying to be very open about how they’re looking at these things and explaining these things to you. I find it great, you know, you just feel that you’re part of the team.

 

Do you think you’re also getting sort of privileged access to information about the latest research?

 

I’ve no doubt about that, yes. I mean, they’re, any question I’ve asked they’ve never been afraid to answer. I mean for instance, there’s been this lithium test, this new, a drug based around lithium, I think it is? And I was put forward originally, to be part of a group that was going to try it out, and unfortunately, because of my medical history they weren’t able to accept me into the group. But I’m still allowed to ask lots of questions, you know. It materialised I think in Italy and now in America and the UK it’s being widely tested on people to see whether there is an effect that’s coming out of it. But I wouldn’t have known about this if they hadn’t been open and discussed these things. So yes, it’s educational as well as anything.

Ian is very happy with the amount of feedback he gets from the research team.

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.

Ian takes part in a study in which the researchers are also his healthcare professionals. In his experience, a valuable relationship had developed and helped him get through some tough times.

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.

 

So 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 feels the way he has been treated while taking part in the cohort study has been fantastic. He says, “keep the good work going”.

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.

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.