Cohort Studies

It’s been more sort of general what they found. You’re never going to, apart from the memory clinic stuff, it’s never been personal feedback about what you’ve done, but that, that’s okay because you can’t have it both ways. You can’t be anonymous in a study and expect to get feedback, so it’s, yeah, you just know that it’s going into a collective pool to be used for whatever purpose.

But what about getting sort of feedback about the study, sort of in general, have you got those?

Well, I think it’s always been made available. You can go on the websites and things if you’re so interested. I think I’ve definitely been sent stuff to read. Maybe once a year you get, you get some feedback and I’ve probably read it, but then just put it to one side. In terms of retention for me, I’ll have moved onto the next thing.

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.

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.

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.

Okay, so it’s more than just getting information or advice over the phone.

You can go in and they will do all the tests that are needed and then it eliminates because I’ve had one TIA, is it another? No, it wasn’t a TIA, so it eliminates that which allowed the optic or the eye hospital to eliminate something from.

And how did you feel having that support?

Yeah, it’s really good. Yeah, it’s again, it’s that reassurance. I know I can go in and get that good advice and they would do all the tests because I assume it’s good for them as well because it’s all part of their research.

Well I went blank on the reasoning test that, all the other ones I managed quite well. There was some I suppose understanding the meaning of words which I think I didn’t, well I think I didn’t have any problems with it because they didn’t tell us whether we were right or wrong which was a bit disappointing anyway but there was one with reasoning, moving counters which had a blank there for a while and I sort of picked up again. You’re under pressure with time as well I think for certain, so it was quite testing, it was quite testing and I was very glad I was in a booth with nobody watching [laughter].

But they, they didn’t give you a kind of overall kind of…

No, no.

…score or anything like?

Some of them did, some of them did. There were scores at the end there so you could see how well you’d done or not.

Okay.

But some, some they didn’t so. I think it tied in with the fact that they were going to, you know, unless there was any information that was critical as it were, not critical but serious they weren’t going to give that information it was just going on to the, and that was made perfectly clear so, you know, no complaints about that.

Have you received feedback from the first time did you, did they send you?

Yeah they sent me just a...

A letter?

…a summary of the data and it went to the GP as well the first time yes it was just, just confirming that my heart was normal and thanking me for taking part in the tests. It was very useful to have that information, that sort of thing. But not a great detail about the reasons for the test and the reasons for the, or the results, just the fact that everything was normal.

Okay, would you have liked more reasons why they were doing it and...?

Yes very much so, yes I think that’s a good point and one that was obviously was-, was evident in the latest, the latest test because they sent me much more information and they sent me the detail of the, of the results which, some of which I understood some of which I didn’t but I’m sure the doctor would have-, would have called me if there was anything to be concerned about. I think their only concern was there was, all of the valves were normal except the one atrium valve, atrium valve was slightly distended but, but nothing, nothing to worry about.

They used to send us much more sort of things like-, they used to send us Christmas cards every Christmas with a newsletter and updating us. Now we’ve got to be more proactive; got to keep up with their Facebook page or go onto their website and check out what’s there.

Okay.

So it’s depends how, how-, I don’t know what’s the word, yes, you’ve got to be more proactive. They’re not telling you and I perfectly understand that, so I’ve got to keep reminding myself every so often, ‘Right, Louise, if you want to find out any more about this you’ve got to make an effort’, you know.

Look on the website?

Yes, and it’s not a big deal but it’s sometimes easy to forget.

And I think it’s harking back to how things used to be in a way and that it’s almost quite old fashioned. It’s almost, like a curtesy that it’s just keeping in touch, so that it’s, you know, just letting you know what’s happening. So, it is feedback, but it’s got that kind of old fashioned traditional kind of context to it that we were somehow, that’s how you were brought up, so you let people know every so often or it’s, so, you know…

Okay.

...so, I think that’s really appreciated probably by others as well as myself.

Yeah if you’re volunteering yourself and your information for a study, you know, it’s only, it’s only sort of, well it’s nice to be able to be informed about it. It’s polite, isn’t it, to give some feedback other than just results on your own physical test.

Just little updates not in-depth just a few lines, a few pages of report maybe or a page of a report, an update, a few bullet points. It’s quite easy to produce a report in an easier understanding format that anybody can understand.

That’s right we had discussions in groups, and we were mixed up. We weren’t, you weren’t sitting necessarily with people that you were at school with. Although we did meet up with people we were at school because I think they did, they did our school, they did a photograph of groups of people from different schools, I remember that. It was quite, it was quite general discussions. I don’t think, I can’t remember if we had topics that we had to discuss on the table, but it was basically just going round the room and just talking about our experiences of growing up in the fifties, what it was like; our schooling, you know, our homelife. Just, just how different it is to, you know, children growing up today really. I mean, it’s so totally different.

What it was like to grow-up and live in the 1950’s

I mean when you think about it, the war had only been finished a few years earlier. I think by the time I was born rationing was finished, but yeah, so it was, times were tough.