Cohort Studies

Oh well, well really for my own benefit to reassure me that my heart is still sound. Although, although I have a lot of hospitalisation and a lot of visits to the hospitals, it’s mostly joints and it’s mostly it’s mostly physical things rather than, you know sort of joints rather than hearts or vascular tests, so I’m always pleased to have, to know that I’m ticking along okay. And I had, I’ve had recent high blood pressure problems so I’m taking medication for that now so I’m more concerned I suppose as I get older of my own health and my own deteriorating health if it is deteriorating because I want to know about that. But it’s also a bit of altruism, I’m also interested in helping teams like you and teams like medics and doing research to give my views and use myself and samples or whatever as good practice for them to do help them research.

Okay, so it’s to...

It’s both, it’s for my own benefit and for the benefit of society in general.

Well I think it’s very, I think it’s important and I think it’s important epidemiology I think is the word. It’s really all the work that they’re doing on different medical conditions, I mean it’s not going to help me and my generation but it will help future generations, you know, what they can learn from us is going to be useful for the next generations, you know, for, for next generations to come. So, but also, on the other hand, these rather in-depth medical studies, particularly this one that they’re maybe going to do on- with MRI scans, they make it very clear that if we want to they will, this information will be shared with our GP. So there is a bit of a selfish sort of element that, you know, that, you know you’re getting, you know, a full sort of MOT which will be, you know, sort of transferred to the doctor which will be sent to ones GP.

Now what I would like is to the motivation from you; why do you keep participating in the study after thirty years or so?

Oh, it’s a long, long time. As I say, I think our lifestyle in the ‘50s was, you just can’t compare it to now because my life from the ‘50s is totally different and the changes over the years, my grandchildren would never understand. So, if someone, somewhere down the line thinks this is interesting, well I’m quite happy to answer the questions.

I would say that their participation is really valuable however they need to be aware that there will be a time commitment from their perspective and they’re unlikely to benefit directly in many cases. They have to attend study visits which, which means they’re having a lot of tests done so their, their doctor or nurse may pick something up that they wouldn’t otherwise have picked up so they may feel that there’s, there’s extra care going on but overall the cohorts study is to change, you know, our understanding for people in the future rather than the people who are participating.

I understood why they did the DEXA scan to see the subcutaneous fat, visceral fat, so I was happy to go along because it’s interesting for me to know as well what’s happening inside of me.

But that way I felt happy it was really straight forward that they could check my blood test; they could check my blood pressure; they could check my weight; they could check my fat inside me and the bone density, so actually was a good thing for me, yeah.

I have got a family history of high cholesterol, so I’ve always been interested in keeping an eye on my cholesterol. And my dad did die young. He died in his 50s, so- of complications of heart disease. And my two sisters both have very high cholesterol. So I’ve always been interested in my cholesterol and metabolism and that side of it, and just keeping track of it. I’ve never had any problems with it. It’s always been mid to low range. So it was just a, as I say, it’s one of these things I like to measure, and if you don’t measure it, you don’t know when it’s changed, you know.

It was, I’ve had regular check-ups with them, so and regular contact with them over the years. But it was last year, I had a cataract removed off of this eye and I didn’t get back the vision that they thought I would get back, so further investigation. ‘Was it a TIA in the back of the eye or was it something else?’ And they were able to eliminate the TIA part of it, so it was something to do with the optic nerve. So that was really interesting to be part, still be part of that.

And how do you feel the fact that you have a number, a contact that if you, kind of that you can call?

Oh, I think it’s reassuring and it’s reassuring because I know they can get on the computer or open the draw and my file is there and they can go, “Oh yes, yes, you had that”.

Okay.

And they will call me back in as they did with this eye thing. “Come in, have the test”.

Okay and they provide advice over the phone?

Yeah, yeah, advice and the advice is normally, “Come in and we’ll see you”. So, it’s always, it’s always there. I know I can go in. It will get seen. They’ll do all the tests. They looked at my eye and did a scan and, and found there wasn’t a TIA there. It was something else.

Yes, it, the good thing about it is the fact that you’re being regularly checked and they do say, ‘Oh,” because I thought I’d gained weight but they said, “you’ve actually lost weight the last time we saw you”. So that was all very positive and they do get onto me for being heavier when I was really heavier and that came down and it’s still got to come down further. So it’s quite good being, having tabs kept on you because you don’t like to, the doctors are busy enough and you wouldn’t go and see your GP for a chat and just a general health thing. While if you’re on the study, the- you can have a chat to them about it more generally, so there’s beneficial. I would say that would be the main benefit if it’s a health-related study, then you can have a chat about general things, about general health things that you could say, “Would this possibly affect the study?” because you can discuss it then and because you’re seeing them because I’m seen regularly. You know, it’ll be, it’s usually every three or four months. Either it’s a telephone call just to find out I’m fine and all the rest of it and how are things going etc, etc because they’re concerned over my general health and what’s happened to that.

So, obviously they want to see participant’s sort of progress over time, measure what’s going on; whether it’s changed, whether it’s improved, got worse or whatever. I assume that’s going to be part of it because that’s screening several, several probably dozens, if not hundreds of people, in which presumably they’ll arrive at some helpful conclusion as to kidney functions and what, you know, what can be done to help those who are probably less fortunate. I assume that’s the operation or the outcome, yeah.

Well because throughout my life I’ve obviously heard or witnessed, you know, many sort of medical advances which even then there’s my own family have benefited from and obviously it’s all for the good of, say, everyone, you know, not just in the UK but throughout the world, these wonderful breakthroughs in medical technology are achieved and a lot of it’s done by, obviously lots and lots of painful long studies of humans and guinea pigs shall we say, and obviously they can see a pattern.

Like I say, I think it’s important that these studies are carried out not necessarily for my family but for people living in the UK etc. or across the world. So, yeah, I’ve got no concerns about it, so yeah, I carried on with the mission as it were.

I mean I’m very happy to help people and especially because I was involved in children’s homes and foster homes, you know, I’ve probably got a good background from that element that might actually help people in the future, you know. So in terms of the system I went through as a child, I’m only too aware that I wish I’d had a bit more help when I was a child so if I can give any-, say anything that might help you and your team to improve or learn something then I’m up, I’m very much up for it, you know.

I would encourage them to, you know, if they’re at all interested in how people live and how society operates, I think, to be part of something that feeds into that is extremely important.

Okay and why do you think it’s important?

Because we need to know how society operates, how it works and we can only do that by studying it; by studying people; studying patterns of behaviour; studying opportunities; choice and so I think if you get the opportunity to participate in something like this, then it would be very worthwhile.

But I think if everybody, you know, does a little bit - and it doesn’t have to be, you know, research. You know, it could be, there are lots of people do, you know, charity runs for things. But I just felt that it was something that didn’t bother me, having blood taken from me or a needle put into me, it just doesn’t bother me. So I felt quite happy to contribute that way. It’s better than running a marathon.

So again, being a dedicated Muslim and I always believe in serving mankind. So, it was not only a selfish thing or thinking, giving back to the community as well. So, if maybe my understanding, my, because I could speak, I could understand. If some mothers can’t speak but they have the same thing happening in their houses and with their health, it’s maybe through me, through my work or my impact, I can help feedback for the person’s wellbeing as well. So if the research find out something, it will also benefit directly the, my next door neighbour, my sister in law, my daughter later on in life. So that was think as well, so really giving back into the community, the work.

I feel that the more we can all do, I’m very much a socialist at heart and I feel that everybody should be trying to contribute to make things better for everybody else, for greater good, so I’m really happy to do that in any way. I really want to support studies that are sort of run for the benefit of everybody.

Yeah I’m sure it’s all valuable stuff as a recent recipient of medical care I can see how important it is.

Okay, so its valuable stuff in which sense, in which ways?

Well you’re obviously looking at a group of people from, of my age group so I presume what happens to them is relevant to future treatment for people.

Okay, so it is not just for yourself.

No.

Or your family.

No.

It’s more for the-.

For the good of all.