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TIA and Minor Stroke

Relationships with the research team and feedback

Many people commented on how impressed they were with the quality of the research staff they met. They felt they were in expert hands, but often also commented on how friendly and approachable the research staff seemed, and how willing they were to spend time answering questions.
 

Angus thinks the research team have been dedicated and very thorough. He can ring the research...

Angus thinks the research team have been dedicated and very thorough. He can ring the research...

Age at interview: 61
Sex: Male
Age at diagnosis: 60
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How have you found the staff who are running the research project?
 
They’re - I’m not sure how to describe it. They all seem very keen on every little thing you talk about to them. They’re all, they like to know everything about you, what’s happening, you know. They’re very dedicated on that, they’re very thorough, is what I meant to say, very thorough in what they’re doing. Yeah, I think I had magnificent hospital treatment, you know.
 
And have you felt able to ring them up in between times? Is there someone you can talk to if you’re worried about anything?
 
I’ve got direct lines to the doctors, not just at the hospital, I’ve got direct phones to the doctors, straight to their phone. Yeah, in fact one of the researchers there I’ve got her mobile phone number.
 
So you really couldn’t ask for anything else. It’s like having a nurse beside you all the time, isn’t it? I could ring her anytime I wanted.

 

 

Rosemary finds the research staff really friendly, and feels she’s been treated as an equal. She...

Rosemary finds the research staff really friendly, and feels she’s been treated as an equal. She...

Age at interview: 73
Sex: Female
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And how have you found the members of the research team that you’ve seen?
 
Rosemary' They’ve been great. You know, it’s like a friendly atmosphere. You don’t feel as if you’re in a clinical environment. They make it so friendly, chatting away, not only about the research and everything, but on a personal level as well, that you know, every day-to-day things that go on. So that they make you feel at ease, you know, not as if you’re in a clinical environment at all.
 
Brian' They talk with you rather than to you.
 
Rosemary' Yes, I would say that when you’re talking with them , they’re talking with you, not to you, not you know, sometimes you can feel that someone is sort of towering above you and you’re the little one down on the floor, but this is not. It’s just as if you’re sat in normal conversation.
 
Rosemary' I think the staff, I think, you know, on the whole, they know just what to say to people. If you are not sure on something, do question it. And also to have the chance to go on it, I know there are some people that would feel, “This is not for me. I don’t want to be involved.” But if you can help, thinking of other people that might need it, do. If you get the chance, go on the research programme. It’s, it doesn’t take up a lot of time, not for yourself. I mean I spent, I think, possibly an hour with them, with the tests I had done, and I’m not required any more, but I can go along with my husband to just to see how his progress is going. And also I think, with a research programme, the patient is being kept a close watch, and I feel really confident over that, that if there was something that’s not quite right, they’re going to pick it up.
 
It might sound an odd question, but did you enjoy taking part?
 
Rosemary' Yes, I did enjoy it. I found it very interesting, because of the questions that were asked.
 
Brian' Illuminating.
 
Rosemary' And I felt that I wasn’t an outsider any more, that I was involved with it.

 

Phillip takes the view that taking part in the research is almost part of a bargain with the researchers; by giving them what they need he hopes he will gain some benefits in terms of greater attention and involvement in his care.
 

Phillip is keen to do anything he can to help the research team. In return he hopes they will ‘go...

Phillip is keen to do anything he can to help the research team. In return he hopes they will ‘go...

Age at interview: 72
Sex: Male
Age at diagnosis: 71
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I’m in compliance. If they want anything from me, it’s theirs. They’re doing this wonderful thing for me. And if they wanted to cut off the inch of my end finger, so long as they did it off my right hand, because I’m left-handed, then they can have an inch off my left finger, right finger. Well, they’d need a good reason for that. So, yes, undoubtedly if they asked me whether they wanted to take samples, and I’m sure, they may well have, in fact I’m almost certain they would have, wouldn’t they? Then I would have certainly said, “Absolutely, absolutely.” If they wanted to cut a quarter of an inch off my carotid and stitch it back together, and if they felt that was suitable I would have said, “That’s absolutely wonderful.” Because I, first of all I feel that if you’re very enthusiastic it gives them motivation. Because you’re on their team. You know, if I can get myself, if I can get them to think I’m a part of their team, then I think they can maybe go the extra mile. I mean, you know, it, it’s okay but, you know, my surgeon had done, has done five hundred operations of this nature, five hundred endarectomies, right? So realistically I’m a forgettable cipher in her life. And so she’s going through the mechanics of being a technician and a precision surgeon and getting it dead right. “But wouldn’t it be nice”, I think in my mind, “If I can get an extra little bit so that there’s this tiny little bit extra concern?” That’s very selfish of me. And we all want to be a little bit privileged, don’t we? It’s instinctive in human nature. I’d like to have a tiny bit of privilege. That’s why [study name] is so wonderful, because it gives me this tiny bit of privilege. And so if she had wanted something, I would have absolutely volunteered, because I felt that would, I don’t want to be a reluctant member in this programme.

Although Phillip is very pleased with the high quality of care he has had from the research team, he would like a closer relationship and more feedback about how the research is going.
 

He would like more feedback about what the researchers are finding and would like to feel more...

He would like more feedback about what the researchers are finding and would like to feel more...

Age at interview: 72
Sex: Male
Age at diagnosis: 71
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And would you like to hear more about progress with the research and the findings? Do you get much at the moment?
 
I get none. I get no, there’s no - frankly this is a research study, it’s a rather academic research study, I think. The results are published - as far as I know there’s only one publication so far. This publication is not readily accessible. And there are some public handouts, but the public handouts really don’t have any technical content, which is what’s important to me. I would really love to be a part of, an actual part of this research programme. I would like to be in there. I would like to be working in a sense with them. Find out what’s happening, find out what things need to be done, finding out how I can contribute. Maybe that’s not, you know, I haven’t ever worked in a medical research study, maybe that’s not how medical research studies are done. Maybe they set up a protocol, they write down a strict set of procedures and they strictly follow these procedures, and they don’t wander from them because that might in a sense muddy the water. But, no, I have no idea, since my surgery, when I read the papers that were available at that time. I occasionally check and there hasn’t been anything new. I checked about two months ago, so if something happened in the last two months then of course I’m incorrect. But I’m going to find these things by accessing them through my fortunate research contacts, calling them up and asking them. There is no contact point. There’s nobody I could call. And if there is, I don’t know who it is. It might be just I got it wrong. But, you know, I have worked hard. Every time I see my nurse I do explain that I’d like to know more, I’d like to be more involved. I’d like to have another - I rant on about this [laughs] - another ultrasonic scan. I’d like to know how the research is going. I’d like to know what the, with their newest protocols, if they have a new recommendation for a new drug regimen. Because I’ve just, that’s it - I’m taking these drugs they recommended to me eighteen months ago.
 
Now maybe as a consequence of this research programme they’d recommend a different ratio, a different mix, a different set of drugs. Would they have contacted me? I don’t know. They may well have and nothing’s changed. Maybe they would tell me about changes, and there’ve been no changes. I find this dissatisfying. If you’re part of this, I think - I mean, look, they only have to send an email to everybody, don’t they? It can’t be too difficult to send a monthly report, you know, the [study name] monthly report to the members. Or something like that, you know. I just, it’s puzzling to me, because that’s not how I would run research. But then I’m a physicist and so our research is sort of somewhat different anyway. It doesn’t involve people [laughs].

 

Phillip’s curiosity about the research is partly because he is himself a professional scientist (although he has not done medical research). Frank, who like Phillip is from a professional research background, also said he’d like to know ‘where it’s going, what they’re doing. I suppose I’m so used to reading scientific papers, I’d probably like to pick up a paper and read what they’ve done with it, where they’d published it.’ Phillip also suggested the research team could hold some public lectures and perhaps set up a group where research participants could meet up and compare notes about their experiences.
Other were less worried whether they heard anything about the results of the research, and felt very satisfied with the research team.
 

Dennis would be interested to know how the research progresses but it is not that important to...

Dennis would be interested to know how the research progresses but it is not that important to...

Age at interview: 83
Sex: Male
Age at diagnosis: 82
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No, I can only pay the highest of compliments, really. No, I’ve been very professionally dealt with. What more can one ask? [laughs].
 
And in terms of the research, do you, how long will you continue in the research programme?
 
Well, I think one signs up for five years. Not - because we’re likely to be moving and don’t know to where, that may not survive five years. It just depends. Although personally I’d be quite happy to keep in touch with it if that’s helpful, but I realise that if I go outside the boundaries that might not be possible for them.
 
And do they keep you in touch with how the research is going? Do you get any up-dates [study name], or would you like to?
 
Not especially. I don’t know how that would help them, because obviously it involves more work. I suppose, ultimately, it would be interesting to see what conclusions can be drawn, therefore what advice can be given. Probably more help to the medical profession.
 
Okay. Is there anything you’d want to say to other people about taking part in research, from your experiences?
 
Only that I could recommend it, if it’s convenient, physically convenient, for them to manage. Obviously, it involves some travelling from time to time, so it depends where you live, and your means of getting to and from. But they have been very helpful in coming to me occasionally. I mean, the twenty-four hour monitor would have been fitted on my first annual visit, but because I wasn’t able to go back next morning - we were actually going away - they decided to postpone that and make a separate event of it, and came here, on two days. So that’s been very helpful, and I’m sure they would be to anybody who found difficulty in travelling.

 

John took part in an extra MRI scan as part of the research. (See also ‘Taking part in TIA research’). He was not entirely sure what they were trying to find out, but wasn’t too worried about that. He said, “I feel it’s up to me. If I wanted to find out more, I’m sure I could ring the researcher up and ask for further explanation. But because I don’t know enough about MRI technology I would feel that… it wouldn’t be particularly fruitful.”

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Last reviewed June 2017.
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