Some of the people we talked to had taken part in a research study looking at stroke and TIA. This project is what is known as a ‘cohort study’, in which a group of people with a particular condition or set of characteristics are followed up long term. The research aims to look at the risk of having another TIA or stroke, whether there are any factors which can predict who is more at risk, and which treatments can help reduce that risk.
The first task for the research team is to confirm the diagnosis and see whether there are any obvious risk factors such as raised blood pressure, or a blockage in the carotid artery which takes blood to the neck, head and brain (known as a ‘carotid plaque’). This usually means having scans, blood tests and blood pressure monitoring, as well as talking to the research doctors and nurses.
Anne is a retired assistant college secretary. She is widowed and has 3 grown-up children. Ethnic background' White British.
Yes, I’ve got various sheets of paper with all the different things that were done but the most impressive thing, I think, was the very beginning when I had a very thorough interview with one of the doctors, who then explained what needed to be done, and on that same day there were blood tests and then there were heart monitoring and various other tests, and I felt that one couldn’t have had a more thorough and helpful MOT, and I was very impressed. And then there were interviews later on, following up. And this, the blood pressure regular taking for about a month, and I now have one rather more old-fashioned one, which I do three times at a certain time on Sunday, and I think that’s to go on for a bit.
Is that also transmitted by phone line?
No, no, that’s a sort of steam one.
So [laughter] you scribble down on a form.
Okay, right. And did you have an MRI scan?
What was that like?
The MRI scan is when you’re put in a sort of thing which you think is going to take off and go into space - is that right or is that not right?
It’s the tunnel thing?
A tunnel thing, yes, that was all right. It was such a relief not to be completely enveloped, which previous MRI scans which I’ve had for my back I didn’t like at all, and got very claustrophobic. Until the last one where it was open, which is a huge advance for thems with claustrophobia.
And what about the noise? Because people sometimes don’t like the noise levels in an MRI?
No, I think they’ve improved it, haven’t they? I don’t think it’s as noisy as it used to be.
Did you have headphones on?
Do you know, I really can’t remember. I just remember sort of lying down on this thing which luckily you weren’t covered up, it was much more open than I expected, so that was good.
Frank is retired and in his 60s. He is married with two adult children. Ethnic background/nationality' White British.
So, after that I then went and saw the research project people and went through various things and had a whole series of examinations' a blood test, NMR [nuclear magnetic resonance imaging] - which they repeated after injecting I think some iodine to see where the problem was, which they located a speech problem. My speech had slowly got better over several days. My arm got better within a short time, but my speech carried on for - I mean, it got better over hours, but I’m sure it’s not as right as it was, actually. So yeah, I had that. I had obviously an ECG [electroocardiogram], loads of blood tests, whatever, and apart from the small brain function problem, there doesn’t seem to be anything wrong. I also had a cardiogram, which seemed to show my heart was okay, and then later I had a bubble cardiogram, which showed I’m one of the twenty-five per cent of people who’ve got a hole in the heart. It’s as many as that. Twenty-five per cent of adult people have got a hole in the heart. Which is standard. And what I obviously had was a DVT [deep vein thrombosis]. I mean, because having sat on a plane for something like ten hours and I hadn’t been taking my aspirin, I hadn’t really drunk very much, I was really sitting pretty still, I was reading or watched a bit of a film. So that was not a good scene, so it was really a DVT, which I probably had a paradoxical embolism, which meant that a clot from a vein passed through the hole in the heart and went to the brain, which is a standard thing. So I later then had a bubble cardiogram, where they inject a saline solution, which has got very fine bubbles in. And with the cardiogram, they can actually see these bubbles go through the hole in the heart, and actually when you put a pressure on more go through.
Further information about the link between TIA and a hole in the heart is available on the Stroke Associations website.Many of the initial tests performed by the research team are similar to those offered as part of usual clinical care (see also ‘Tests and scans’).
Rosemary’s experience was a bit different as she was asked to take part as a healthy volunteer to act as a ‘control’ or comparison with people who had had a TIA.
Rosemary is a retired secretary. She is married with 2 grown-up children. Ethnic background/nationality' White English.
They were mental functioning tests, mainly, sort of they would give you a word, and you had to make connections with that word, or there was a word, they would give you a word to spell, and you spelt it as normal and then you spelt it backwards.
What other kind of tests were there? Did you have the MRI scan?
No, they didn’t do any physical tests. It was mainly mental and asking your background, family background, what your parents died of, at what age, whether you had siblings and whether they suffered any heart or stroke problems. And so that I think they were building up a picture of each side of the family.
Blood tests, did you have any blood tests?
Yes, I did have blood tests. They did blood tests and blood pressure. And I think I think that was that was all the physical tests, was the blood tests and the blood pressure.
Right. And for control participants, was it just one visit or are you still--
It was one visit for the controller. And you’re welcome to go along when the patient goes back for any tests or interviews and they like you to sit in on it.
Right, but they’re not going to do any further tests with you?
Not as far as I’m aware.
No, just that.
But they said, anything that , now I’ve gone into the research programme, anything that happens with my health through my own GP will be recorded so that they keep a sort of watch on anything that might happen in the future.
Are you happy about that? Sometimes people worry about their data being shared with other people.
No, I’m quite happy, because I think if it helps for future patients, then it’s a good thing. You know, it’s not, it’s not like its being put in a newspaper or something like that, not worldwide. It’s kept more or less confident anyway. It’s confidential.
Several people were asked to take part in longer term monitoring of their blood pressure, sometimes using a mobile device which automatically transfers the results to the research team for analysis. Others just took their own blood pressure readings and kept a record. Sometimes they were visited at home by a research nurse.
Dennis is married with three children and five grandchildren. He is a retired music educationist and a practicing composer. Ethnic background' White English.
Yes, and of course for a period, was it a three monthly period? I kept daily recordings of my blood pressure, three times a day, using the Blackberry system.
Automatic system. I maintained my weekly blood pressure manually. I’ve still got the machine. And periodic visits from the nurse.
They come out here do they or?
Yes, yes, yes. Last week in fact, as it was the year, the year’s interval, she came and fitted the twenty-four hour monitor.
Tell me a bit more about these things, because these are quite interesting. Let’s talk about the Blackberry blood pressure thing. What, tell, describe what happens with that.
Well, it’s a normal blood pressure machine connected to the Blackberry device, which you simply plug into the mains, press the button and the reading is automatically transmitted straight to the clinic.
So you don’t have to press any buttons on the Blackberry or anything?
No, no. It’s all set up.
Very easy. And that for three times a day for, I think it was over three months. I forget now.
Did you ever forget [laughs]?
No, no, no I didn’t, and I don’t really forget my weekly monitoring, unless something out of the routine happens, like if we go away for a couple of days. And the same with taking my medication. I keep a regular pattern.
Yeah, and what was the other thing you said? There was the Blackberry and then, oh, the twenty-hour monitor. What what’s involved in that?
Very little. Just strapped around and fitted to the waist, and you carry on life as normal, and then you sleep with it. You hear the machine going off every half hour. And then twenty-four hours later it’s removed.
Age at interview:
Age at diagnosis:
Angus works as a fence erector for sports events. He is married with 3 adult children. Ethnic background/nationality' White British.
They explained to me that - I mean, I went up the hospital in the next, in that first month I was up there twice a week, I should think, and in that time I had 24-hour monitors attached to myself, blood pressure monitors, ECG monitors and various monitors. And then went back up and had them removed from me. So they were keeping me sort of monitored 24 hours a day. I was doing my blood pressure three times a day, it was three times a day and three times each time, if you see what I mean, so it was like nine times. And that was being transmitted, I had a mobile phone from the hospital that they gave me and as soon as I took the blood pressure it sent the figures off to the hospital. So I was being monitored by the hospital all the time, you know, in this month, that was, that first month and I was doing this blood pressure three times. So there was, I was being monitored by the hospital sort of three times a day.
And in fact they rung me up a couple of times and told me to change my medicines – well, not change them, but up the dosage on particular ones .
Was that quite reassuring?
Well, it was, yeah, because you felt someone was on your, someone was there looking at you all the time, and I thought it was like being in hospital, actually. As good as, because I was being monitored basically 24 hours a day, you know. And yet I was at home with the family and it was great, you know.
I’m still in this study the hospital’s running and will be for, well, a minimum of five years, whereas I monitor my own blood pressure and write it down, then every three months or so I get another hospital appointment, take it up there and discuss the blood pressures and see if there is anything on there to, if anything happens to me, to see if the blood pressure’s sort of gone that way to give them a pointer of what it is, you know.
Age at interview:
Age at diagnosis:
Vernon is married with 3 adult children. He is a retired estate secretary and livestock manager. Ethnic background/nationality' White British.
The research project that you got involved in, can you remember when they approached you about that? Was that when you were in hospital the first time?
It was certainly after the first time. I think it was, you know, quite soon afterwards. I know a lady came, from the [hospital], I suppose.
And what did she do with you? Did you have a questionnaire to answer or?
Yes. She was only here a short time, and she came twice. She gave me a date for the second, the following year, I think, and that was all. She said she wouldn’t come again.
And so what was she doing? Blood pressure tests? Or did she take blood samples? What did she--?
She certainly took a blood test, pressure, blood pressure, I think. That’s about all. I can’t remember, I’m afraid.
So you haven’t had the, they have this thing that monitors blood pressure and then phones the results in automatically to the hospital by mobile phone?
You didn’t have that?
No. Have you had to take your own blood pressure and keep a note of the results?
No, I go every six months, I think it is, to the surgery and the nurse takes some blood tests, pressure.
Dennis was impressed that the research nurse made a special arrangement to visit him at home two days running to fit the 24-hour heart monitor and take it away again, because he wasn’t able to attend the hospital because he was going away.
A few people were invited to take part in additional research tests.
John is a documentary film-maker, married with one daughter. Ethnic background/nationality' White British.
I was asked, I was asked to take part in a particular research project which was looking at developing techniques, MRI techniques, which reduced the need for injecting radio-opaque fluids. I went along to the hospital and met with the researcher, who explained what they were doing. I think you need, to get more from that conversation I would have needed a lot more knowledge about the brain, MRI technology, and I didn’t want to take up her time. I felt very comfortable that there was a good research project. I was happy to take part in that. And the procedure itself took far longer than either I had thought or she had thought, because there was some problem with instrumentation. I think they were slightly pressurised then, because their next patient was coming in. It was explained to me that they were interested in seeing my brain, because there was some anomaly had been noticed on a previous MRI and they thought it was an interesting brain to have a look at with their MRI. 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 could be fairly, it wouldn’t be particularly fruitful, let’s put it that way.
The other research, the blood pressure research, is much simpler to understand. The idea of this telemedicine is tremendous, that you can take your blood pressure reading, it will be transmitted immediately, somebody is monitoring that. I don’t know, and I should ask. That’s interesting. I should ask, “Is there a programme set up? Is that, is there some form of automatic monitoring that notices trends or particular anomalies?” And very reassuring to have a telephone call to say, “We have spotted something as a result of this procedure being in place” and that the medication is being fine-tuned. So I really feel that that piece of research is working for me. I understand what’s happening. And I think that should be, the results in terms of the correlation between blood pressure and TIAs or strokes in general, that could be made much more aware, much more publicly available. I knew in a vague sense, in a general sense, you know, I should look after my blood pressure, but I didn’t really understand it’s the prime cause of TIA, so that’s what’s been explained to me.
And they’re following you up longer term. Do you know how long they’re going to be?
No, I don’t. I’ve had one teleconference with one of the team members just to see how things are going on. And I did ask what’s going to happen, should I continue taking the blood pressure? They said if I was happy to do so, then yes, fine. That’s good news. So I’m happy to do that. And I believe that every three months or so there’ll be some form of follow-up.
As several of these comments imply, being part of the research has sometimes given people what they regard as extra benefits, in terms of faster diagnosis, more intensive monitoring and adjustments to their treatment. Phillip saw a direct benefit by getting faster access to surgery because the research team insisted on his behalf.
Phillip is married with 2 children. He is a retired physicist and physics teacher.
Ethnic background' White English/Australian.
And so they ran me through the most comprehensive testing mill. It was, I was there until 5.30. And by now the symptoms were gone. And they explained what I’d had was a transient ischaemic attack, a sort of mini stroke, when a blood clot breaks away from some part of one of your veins and travels into your - it must be an artery - it breaks away from one of your arteries and travels into your brain and causes a blockage. This causes some damage to the brain cells, but the blockage gets re-dissolved and then everything recovered. And in my case the recovery was essentially complete.
But they did realise that my right carotid artery had about a 60 per cent blockage with what they called a brushy plaque deposit. And that they claimed 60 per cent, you should have surgery. So they wanted me to have surgery on this to remove the clot. And this was kind of, suddenly kind of terrifying. They’re going to actually cut my carotid artery open and sort of scrape it out with a toothbrush. I hope it’s a little more subtle than that. I never did find out. And that was a rather terrifying thought. And they also explained to me that, “This has to be done now” because the most likely time for a second event is immediately after the first event. Having survived 24 hours without a second event, my statistics of having one were much less, and every day that passed they would get less, but they were still very high. And so what I really needed to do was have the surgery done immediately.
Now it was an interesting feature of being a part of one of these studies, they, the researcher called the hospital that does the surgery and talked to them about having me admitted. And they explained they couldn’t do it for months, they didn’t have a spare bed. And he explained, “No, you’re going to have to do it now.” And somewhat to my amazement, about 30 minutes later one of, the head of the surgical department turned up to talk to them about this. The advantage of being a part of this study is that there’s power, you know, there’s authority here.
And so they finally compromised on about two weeks, which the [study name] thought was too late. And the surgeon thought it would take me at least two weeks to get my head facing in the right direction. And actually that was quite right.
Phillip was generally very positive about the value of the research and the benefit to him. He described his initial contact with the research team as ‘superbly rewarding. They did an absolutely brilliant job, I was just totally impressed by them.’ But he also had some less positive experiences, mainly because he wanted to have a closer relationship with them.
Phillip is married with 2 children. He is a retired physicist and physics teacher.
Ethnic background' White English/Australian.
I had a CT scan and I had, you know, ECG. And, I think that, yes - now that’s quite an interesting question. I got a mysterious phone call once about some guy who claimed he was part of the study and he wanted to, wanted to know if I was interested in doing an MRI. And so, I was away, I’d been away for a week. When I got back I called him. And I got his answering phone and I explained, “Yes, I’m Phillip, I’m whoever I am, and I would just love to do this.”
And he said, and he never called back. And I called him several times. And one time I got his wife, who took my name and address and said that he’d get her to call, him to call back. But he never did. And so then I contacted [study name], which isn’t all that easy because, you know, it’s a study, it’s a research study. There aren’t really people. There’s no pointer. It’s run by a professor, and I’m not going to call him because I don’t think he’d like to have one of his numbers in his statistics calling him up on the phone [laughs]. And, and nothing, I never found out about that. So that didn’t happen. And it was a bit, a bit unsettling because I really would like to be involved. You know, I would like to participate, partly for my own curiosity and answers, and partly because I don’t know how many people they have who are completely time-free and can go and do anything they like. You know, if they want me to come and stay with them for a couple of weeks, that’s fine, whatever. But that’s not the way the study works and that’s not their study protocol. And I think they’re probably right, because you can’t afford to have a loose cannon in a study protocol, because it makes the whole study look a bit, it could so easily get skewed by a few individuals.
What about the research nurses who work on the project? Do you feel able to contact them?
No, I’ve never contacted any of the nurses except to go there and have a check-up. They’re very friendly and they’re very helpful. And whenever I mention these things they’ll say that, “I’ll refer them to the researcher.” I’m a bit puzzled by the way the research does because each time I go it seems to be a different researcher. I guess what happens is that there’s a half a dozen researchers and they only have a couple of hours a day, a couple of hours a week when they’re actually in clinic. And so when you go you just meet a different researcher. But, no, I’m not, I just, I think I’m talking to the wrong people. I don’t really think it’s a part of the clinic to involve, it’s a part of the study to involve in any kind of intervention activity. I mean, you know, initially it was a non-intervention study. For the first three years they were just following people. And then they realised that this business of having a drug regimen, which is its own scary, scary thing, that this drug regimen really produced a fantastic improvement in the statistics. So that what they did was, they decided that it was not correct to be doing this with blind control studies. And so now everybody who joins [study name] is immediately put on the drug regimen. There’s an automatic drug regimen and everybody is put on it because this is sort of the one that works best. And it’s not tailored for the individual. And that’s probably right. We all have the same disease.
And - oh, as part of one of the studies of [study name] is you get to wear a pulse monitor for 24 hours, which takes your pulse constantly. It produces a constant plot. And so at the end of the study they take the memory card, the SD card away and they have a full record of your heart, of your pulse for the la