Messages to professionals
Many people had things they wanted to get across to health professionals such as doctors, nurses and researchers. A lot of these messages were about the way people were first told about trials and the kind of information they were given. (See also ‘Information and questions’, ‘Being asked about taking part in a trial’ and ‘Difficulties finding a trial to join’).
Gill wanted to encourage doctors to offer people a chance to be in a trial.
Doctors may want to protect their patients after breaking bad news, but they should not be afraid...
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I think people should be encouraged to do that because it’s part of being in a community, a citizen of a community, really. It’s part of that community contribution that people can make. I know that when you, you know, you have an awful diagnosis it can be really, it can, you know, throw you and sometimes, you know, it can’t, you don’t want to think about other things. But I think also professionals perhaps shouldn’t be scared of asking people. I think when it’s something sensitive there’s a feeling perhaps that [intake of breath], ‘Ooh well, I wouldn’t want to overload with, you know, getting them to do something else.’ And I know from what I’ve read from the GP angle on this that there is something about the nature of the GP-patient relationship that makes the GPs very kind of protective of their patients. And perhaps they should be a little more relaxed about it, that people are, they should, you know, these things are, should be offered to people and it should be part of the routine. And if you know that, if there’s an expectation that if you’ve got something you might be offered this, I don’t think it would be so taboo and feel so difficult.
I mean, I do think that there should be more simple advertised messages out there. I don’t know that generally people would even think about it. I don’t know. We don’t get sort of advertised messages about, ‘Would you like to be involved in research and this is where you can contribute.’ We have to sell it to the general public as being something that is a really good benefit to - okay, you’re ill, or maybe you’re not ill, but, you know, in terms of NHS trials a lot of it is with people who are suffering from something, then this is something that you can do that that would actually help for the future. So I - yeah, I think there should be much more open discussion about it and much more, some simple messages -where you can find the information, if you want to get involved in research these are the benefits, and do some advertising. There should perhaps be some, something, some money put into advertising.
A few people felt researchers had been too keen to get people to agree to be in a trial. In Polly’s case, she felt the doctor “was just slightly more interested in getting people onto his trial than stopping to think very hard.”
Professionals need to be very honest with patients, and be sure they really feel the trial is...
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I think the professionals have got to be very honest with the patient. And in some ways I think perhaps the doctor who was offering to put me onto a clinical trial in the end when the chips were down was just slightly more interested in getting people onto his clinical trial than stopping to think very hard. You know, if this was, this is his patient, is he really making sure that his patient gets the absolute best treatment there is available? I mean, often that won’t be the case with trials. But where it is I think the doctors have to be quite sure that if this was their wife, their daughter, their best friend, are they sure they would say, “Go on the clinical trial.” Or would they say, “Actually I think there’s something else better we could do for you than the risk of being randomly assigned to no treatment or perhaps not the best treatment that we know.”
I think it’s very difficult, because I think probably all doctors doing clinical trials have high hopes of the treatment that they’re testing out is going to prove to be some kind of breakthrough, is going to be useful and valuable for their patients.
So part of them must be saying, “I think my patients will do well out of this.” When you ask, when I asked my doctor, it was, “Well, I may think that, but I don’t know it. I can say I’ve got a hunch, but should I really be prescribing on a hunch?” And I said in the end, “Well, yes, actually. Because I come to you, my doctor, for your best hunch. There are going to be, may be lots of things that doctors don’t altogether know. But from your long experience, I would like the benefit of what you on the balance of what you kind of feel, even if you can’t prove it, is going to do me best, most good.” And I think that is a tricky dilemma for doctors with these clinical trials.
On the other hand, Angela explained how important it was to her to have been offered this chance.
Angela felt well supported and informed by her clinical team. Being asked to take part in a trial...
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Well, yeah, I’ve, I found the professionals really helpful, supportive, as I say, speak plain English, are prepared to put up with one’s individual mores and, and idiosyncrasies, indulge people – well, they’ve indulged me in taking, I’ve been supported in everything I’ve done, whether the team may have thought it clinically appropriate or not. And they’ve always been there, and if I need help or I need to change meds or whatever it is, then they’ve been easy to get in touch with and very responsive and positive, which doesn’t mean to say that they won’t tell you about negative things if you ask. But they’re not bombasting, bombarding you with awful things at the beginning. There’s very much a feeling that you can come to things at your own pace, mm.
And is there any specific message about how to involve people in trials, from the way that you’ve been treated?
Well, just by, I can’t - one can only do what one can do, and that is to try and influence one’s own social network.
I was thinking about the professionals and how they interacted with you over the trial.
They were, well, they were great, you know. I mean, I felt informed. I may have forgotten since [laughs]. Again I felt supported. I was given lots of information in a very positive way, at a time when… I could have been really emotional - I don’t know, I suppose I was - but that I was relieved and pleased that I was able to make a contribution. Yeah, that’s right. Mm.
Yes, because, yes that’s right, pleased to be able to do something positive, turn it round out of something pretty negative.
Angela is an example of someone who felt well-informed about the trial (even if, as she says, “I may have forgotten since”). However, there were many comments about the need to improve the kind of information given out. People wanted information to be explained face-to-face as well as in writing, in clear, simple language. They wanted doctors to be as open and truthful as possible, and to be sympathetic to patients’ concerns.
Celia felt well-informed herself, but as a lay representative she knows people often find trial...
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Well, I felt that the way that they did it with me was quite acceptable. Obviously they need to put things in language people understand, and make sure that all the information is given to the patient both orally and in written form for them to take away, that they’re given them time to think about it, and that, you know, the truth is told to them at all times.
And from your perspective on the consumer panel, do you have views about how research and trials are organised more generally?
…Well, from other people’s experiences I know that the information given isn’t always good enough. Some people have found that, that they didn’t, they weren’t told enough, and again that it wasn’t written in language that people could understand. There was, there’s quite a lot of criticism in the group about how the sort of language used to explain the trial to the patient.
Pam asks doctors to understand how difficult it is to take in all the information, to be patient...
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Please be very patient with us. We are stressed, we are very, very worried about our conditions, we are very scared, we are going into an unknown area and that can be very, very worrying. Please answer all our questions. Some of them may seem stupid to you, sometimes we may not take on board everything you say to us. Please do put up with us when we do ask you the same thing, we ask you to repeat things in a different way. Please let us bring somebody with us, and make sure that they’re included in any discussions, and just we rely on you for your help, so you’ve got to make sure that we can trust you, so therefore you’ve got to give us confidence in the trial, and explain all, explain it all in words of one syllable. You’ve got to explain the advantages, you’ve got to explain the disadvantages – okay, so at the end of the day you leave us to weigh it up for ourselves, but your guidance is absolutely vital and that’s what we need.
Elizabeth asks clinicians to treat each person as an individual, respect their choices and give...
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I think I would say treat each patient as an individual. And… recognise that they may have reasons for not wanting to go or take part in trials that you’re not always, you might not be aware of. And that they may have very good reasons that they want to take or not take part in a particular avenue of treatment, for reasons that they don’t always know about, you know. I think it’s very important that they realise, appreciate that each patient is an individual and however much statistics show that this is better than something else, for the individual it’s very important that they have, do, or feel comfortable with what they’re having. In fact I’ve just written a poem, [laughs] I’ve just written a poem about what we would like to tell the oncologists.
Do you want to read it?
Have I got it here? Well, it was just some of the things' however bleak thing are, please give me some hope, otherwise I’ll find it difficult to cope with the treatment I’m having. I am an individual. Despite all the research, there may be very specific reasons why I decide to go down a particular treatment route.
And then there’s other things like' I know there may not be any proof that certain diets or complementary treatments work, but I want to try and help myself in any way possible. It might not cure the cancer but it does make me feel better and gives me back some control.
And it goes on like that' It’s difficult for me to make a split-second decision about what treatment options I decide to have. I might need to go away, think about it and ask others before deciding what to do. The terminology is very alien to me, and it’s a huge responsibility deciding what to do when so much depends on it. I’m not the only one affected by my illness so please don’t threaten me. If I, don’t feel threatened if I want someone to sit with me, for my appointments, and ask questions. I need their support and sometimes they are able to remember things about my health that I don’t, and they are another pair of ears to hear what you tell me.
Patients may look calm and unemotional on the surface, but they may not be feeling that way...
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They’re all so busy, and I think it’s taking - they do take time with you, but I think they don’t take feelings into consideration, because when I was told I had cancer there was three nurses standing and the specialist here and my son next to me. Now I must have appeared [bangs table] as hard as that table. My son started to cry so immediately it was, you know - they didn’t really know what I was feeling, and I think it was the assumption from visual things that, boy, this woman really has not flinched. They forget the mother instinct. If I had got upset my son would have been so upset - I mean he was upset as it was - but he would have been so much worse. And he today still says, “I think I let you down.” But you could, they could see that he was upset. I appeared to have taken it all in my stride, but nobody knew what was in the head and in the body, and I think they’ve always got to take into consideration that nobody just takes that kind of news - as I say, I can remember thinking, “What an awful word.” You know, there’s nothing musical about it. You know, it’s [slaps hand] cancer. And they, they just took as it as facial. I think you’ve also got to predict that no person’s going to really feel no feelings at all.
And do you, do you feel that they approached it sensitively when they were talking to you about the trial or was that also a time when you felt more?
Oh no, no, I felt that was fine. But I think because their initial thing - that’s what I meant with, because you see they always say, “Oh, you know, Rose always looks well and she’s full of life and she’s all.”
Because they’re still really taking from the visual. I think sometimes if only they had time they would - they don’t really know you, do they? And you can’t expect them to know you. But I think if they just - I used to always be able to put myself in somebody’s place, so I think that if they could only stand there and think, “She might look like this, but there’s a reason for this”, and always know that the person, no matter what facial things they’re giving away, the person is not really feeling that way and try and dig a little bit into it. You know.
However, it was recognised that not everyone will want the same degree of information. Some people wanted to have a lot of detail, while others wanted things summarised.
Sabiha thinks long information leaflets can be off-putting. It would be good for people to have a...
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There was quite a lot to read, and I think sometimes that can be off-putting because, you know, sometimes you haven’t got the time to go through all the pages. And you put it away and you think you’ll read it, you’ll read it, to the point when sometimes it becomes quite urgent, when you’re about to go or take part. So it would be nice to have it in a like condensed way, with like the summary, which I think would be better, instead of pages and pages of information which sometimes people don’t have the time to go through.
Sometimes a lot of writing and a lot of paperwork can be off-putting. If it was to the point, summarised, condensed, and pinpointed the exact points that are more important would be beneficial and it wouldn’t put people off taking part in these researches.
Its very hard for doctors to judge the right level of information to give each person, and for...
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It’s very difficult, obviously, for the doctor or whoever it may be that’s talking to you to gauge what level of understanding you already have, so they don’t want to talk baby talk to you, but equally they don’t want to talk above your head. I don’t mind particularly if people talk baby talk to me because I can indicate that I want to know a bit more in detail. I do get irritated with people who talk baby talk and seem unable to go beyond that. So then I take a very dim view. I think, “This guy or this woman doesn’t really understand what they’re doing. They’re just like the repair man that comes to tighten up the screws on the fridge without really understanding what’s going on inside.” And so I feel dissatisfied if the doctor I talk to doesn’t understand, or doesn’t show that they understand what’s going on.
Have there been some instances where you’ve felt they didn’t really understand the trial or the, the mechanisms involved?
Yes, not I should say at the research-oriented hospital that I’ve been to, though even there, there were one or two cases where people I thought seemed a bit dim [laughs]. But anyway, that’s inevitable and one shouldn’t complain too much. People talking above your head I don’t mind, because I’ve got in the habit when I don’t understand something of saying that I don’t understand. It’s quite a difficult habit to cultivate, especially if you’re supposed to understand and know about things. But I would urge patients always to stop and say, “Stop”, and, “Explain that to me. I don’t know what this is or that is.”
So where have you been more conscious of this people not really understanding? Is that at the GP’s surgery or?
My GP has been fine. He doesn’t lay claim to knowing all the ins and outs of the molecular biology. He says that’s not his concern. He refers me for that, but he’s very good on all the things that he undertakes to do. The specialist hospital has been fine, by and large. But the intermediate place where I was first diagnosed was more uneven, so there are some very good people and some not so good.
Another message for staff recruiting people to trials was that it was important to be flexible about offering appointments to fit in with people’s working commitments. (See also ‘Time commitment, money and other practical issues’).
Rosamund does not think people should be paid to be in trials, but staff need to recognise that...
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I’ve said a bit about how I think the recruitment process could have been improved. You know, it was unnecessarily wearing, and I could have easily have dropped out at that point because, you know, there was a difficulty. It wasn’t actually possible to have a conversation with someone and fix a time that I could easily do. That wasn’t possible. It was a matter of returning letters, being sent another appointment which was, of course, always during the day. I mean this went on, it went on for several months and I can’t believe that there weren’t other people in my situation that, you know, there also probably were people who had to take time off work, even unpaid time off work, in order to be recruited into this trial. I don’t think people should be paid to take part in research, I’m not saying that at all, but I think there should be an awareness of the fact that you have to put yourself out to go through this process even if you’re in the control group. You know?
A similar range of messages came up in relation to people’s care during and after a trial. Wendy felt she was not given enough explanation about who would be caring for her during the trial, while Joanna wanted more feedback about trial results. Both pointed out that staff often seemed too busy to give enough time for discussion and questions.
Wendy would like to have been told in advance that she wouldnt see the professor every time....
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Yes, yes. I didn’t see the same oncologist. I don’t think I saw the same one, I must have seen about six different oncologists over the, the time. And obviously they’re just writing in the notes, in your notes, so I don’t suppose it matters. But continuity of care, I just sort of felt, well, I told them that last time. “If, you’re not the same person, so you don’t remember all that.” So I did sort of feel a bit like a cattle market.
Foolishly, in my ignorance, I thought I was under him [the professor] for the duration. And I wasn’t. And I saw a variety of different professionals. And sometimes, because what happened towards the end was that it was every other three weeks I would see a doctor. And then in between that I wouldn’t see a doctor, I’d just see a nurse and have the treatment. But if I had any issues, then that nurse would feed back to a doctor and I’d get to see them. But sometimes it was so busy, I would actually be sitting on the bed waiting for the drip and the doctor would come to my bed. It wasn’t even in a room on our own in, you know, in confidence. There were other people eavesdropping on that conversation, which wasn’t ideal.
I did sort of feel that once they’d got my decision, they’d sold it to me and that was it, no more input.
What could they do better?
I think they could have warned me and said, “Well, you won’t see me all the time. I’m the main chap, I’ve got a team working under me. Bear with us, you might not see the same team.” Then I would have been prepared for that. But I did sort of feel almost like a second-class citizen because I wasn’t seeing the same chap. Because if you go, if you’re referred, say, let’s say you’re referred for something to do with your ears, you’d see the ENT chap. You usually see them or their understudy, don’t you? And they usually explain, “You’re seeing me because he’s busy or doing operations or whatever.” None of that was ever mentioned. It seemed to be taken as read that I would just get any of them. And rightly or wrongly, I don’t know, but it looked like some of them were quite junior doctors.
It should be easier for people to get the results of trials, and researchers should make sure...
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And have they said to you if they’re going to let you know what the results of the trial are?
Well, not really. And that’s something that I also find very depressing, actually. Because again in the case where my husband was on a trial, they’d been trialling a particular drug for quite a long time on a European basis, and then they’d moved into just trialling it in one London hospital, but the European trial had pretty much closed, come to an end, and was being reported on. And I actually asked for the results of that, and I was told at the trial hospital that, well, they didn’t quite know when they’d be coming out but, yes, of course, possibly something could happen one day. I actually asked my husband’s consultant personally in a different hospital, and by return of email he sent me the results. They were there, they were possible, they were available, and they were not given automatically. And even when asked they were not exactly withheld, but it wasn’t made easy.
And that I do feel - I mean I don’t think my husband could have cared a pin what the results were - but I wanted to know. And in the ovarian one I certainly would like to know, because there are, there’s obviously, I mean, you know, plenty of opportunity for me at some later stage to be told I must be checked. And whether or not the blood test or the scan are a better way to do it, I would be very interested to know.
As far as the professionals are concerned, I think they do need to think very carefully about the problem that, yes, a lot of medical advance comes, has come through military sources and originally the soldiers needing one form of cure or another. But we aren’t numbers. We are individuals, who need to be taught to be intelligent about what we are doing, so that we can collectively be politically more sensible about our whole medical world. And I think that means they have to be much more careful about consent forms, and information about trials, and giving results back and discussing, and making sure that the trial builds in the funds for that - because it’s not a big amount of money that’s needed, but trials are always short of money. And I could never talk to the research nurse on [husband’s] trial because he was always too busy. He was sweet and very nice, but he was run off his feet, because there wasn’t enough money. And it isn’t a big amount of money needed to talk to people. So, you know, build that in to your funding.
Again, people liked it if staff adapted the way they communicated depending on each person’s needs and preferences, but some felt staff were not always as flexible and responsive as they could be. (See also ‘Feedback of trial results’).
Kate liked the fact that the research nurse tailored the information he gave to each individual...
The thing I particularly liked about the hay fever trial is that the, the research nurse that was running the study, he kind of tailored how much information depending on how interested you were. So my husband wasn’t as interested in, in the whole trial design and all the rest of it. So he got as much information as he needed. Whereas I was quite interested in how it was all designed and how it was all fed back, and decision-making and ethics and all that sort of thing. And so he was quite prepared to go into the detail with me. And I think, you know, if people are interested you should be flexible and give them the time. Helps maintain motivation.
When Danny's blood pressure was monitored during the trial, one doctor would never tell her the...
So it’s a blood pressure trial, one of the things was your blood pressure got taken. And it got taken lying down three times in a machine that people who have their blood pressure taken probably know, their doctors have got one. It prints out - like Tesco’s - it prints out the blood pressure and they take three. There’s a little gap between. I don’t know why, if it’s because it’s high and they wait. I don’t know why. But you lie there and you have your blood pressure taken, and they take it three times, and they take your pulse which this machine reads as well. Then they ask you to stand up and they do the same again, and the blood pressure is different. Now when the doctor was doing it I’d say to him, “What is it?” And he’d say, “It’s all right.” Well, that’s not the answer to that question, “What is it?” “It’s all right.” And I’d ask him again, “What is it?” “It’s all right.”
Now, it’s my blood pressure [laughs]. I didn’t say that to him, but it’s my blood pressure. Why does he see fit to not answer my question and to tell me it’s all right? Because if I’m monitoring my own health, I need to be aware of what he considers all right is, and I know my historic blood pressure much better than him. And it’s not all right for me to not know, because I’m not up there because I’ve got nothing else to do.
Anyway, so that sort of irritated me a bit, and said rather a lot to me about [sighs] the difference between a bedside manner that he needs to have when I might be being looked after, and they might have decided not to tell me things that might worry me or not, and me being there in my own time giving them my body to write notes about and not tell me. I mean, I just used to sit and read the file as they went out of the room to get something or came back or something like that. I would just sit and read the file, knowing full well that I could, and they’d left it, and I could read it anyway. But, you know, I don’t want to think, “I’m having my blood pressure taken - as soon as he gets out of the room I’m going to look at it”, you know? But what’s the big deal? Anyway, that was strange, and I found it irritating, because every time I went back I thought, “Well, he’s not going to tell me, you know. Why not?”
There’s a different way of dealing with people when, as far as I’m concerned, I’ve been asked to come and give something. I’m coming to give it knowing what I’m going to get out of it, which is a little bit of health monitoring, a little bit of - well, there’s all kinds of things. But there’s some kind of mismatch between me, the research. I don’t know. I don’t want to say guinea pig because I didn’t feel like a guinea pig, but basically I’ve subjected myself. I am not being cared for by the doctor. I am being used, and I don’t mean that in a pejorative way at all. I’m being used, and I believe with hindsight there’s a different way of dealing with people like me. I’m not a patient. I’m entitled to know the results of everything that is written down about me without taking issue and saying, “But I’m right. I’m entitled to see my file.” I suppose I was a subject of the trial, but I became an object of the trial. That’s what, and as a subject I would have felt there was a two-way thing, and as object I was just getting done to by them. That’s what, and it was sad, really. It was sad.
Danny also pointed out that sometimes the language used about trials by professionals can mean something rather different to patients. In particular she disliked the word ‘excluded’, as someone who had previously worked with disruptive school pupils. “Where I come from, in my language exclusion’s bad, you know. You get excluded from school for doing bad things.” The term ‘failing’ eligibility screening could similarly give people an unintended negative message. (See ‘Why people may not be eligible to take part in a trial’).
At a more general level, Sarah put in a plea for straightforward language, and putting things “in layman’s terms, because we don’t all understand what x’s and y’ and equals means. Should do from algebra lessons, but it doesn’t mean a lot.” But she also had a message about the need for better communication between trial staff and the person’s GP.
The trial staff said theyd make sure Sarahs GP was told that she had osteoporosis. Later she...
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I had to give it up, so I had another DEXA scan which showed I obviously still had got osteoporosis. It’s not something that’s going to go away. And I was told by the lady doing the trial that if they found I had osteoporosis in the first place, they’d contact my GP so that I could be put on something to help me. But I went to my GP after an accident, and had heard nothing - this was a few years later. I hadn’t had any medication in those years, and I think perhaps I could have been on something to help me and I wouldn’t have broken two of my vertebrae.
Okay, what, did you ever think about going to your GP and saying, “Do you know, and should I be taking something?”
No, I didn’t realise. What’s really so stupid, I didn’t think that my GP would let me, just let me go without anything. I thought they’d call me, because he does with everything else. And so when I did ask, he said, “No we haven’t heard a thing about this, nothing.”
So you’d just assumed there was nothing they could do for you?
Yes [laughs] I must be living in the last century.
And what about health professionals running trials? What would you say to them from your experiences, ways they could make it better or easier or ?
It would help if we do get a run-down afterwards to tell us, just so that we know that we’ve been of some use and importance, and it’s helped you, in layman’s terms, because we don’t all understand what x’s and y’s and equals means. Should do from algebra lessons, but it doesn’t mean a lot. And if you do find that our GP should know, please inform the GP, make sure they know, because it could take a few years to pick this up, like it did with me. And I feel I’ve missed out on years of treatment, whereas I could have been on something to strengthen my bones for all those years, six years. Yes. But you’re doing a good job though [laughs].
So better communication with your normal--
Definitely better communication.
Yes. I don’t think my GP lost the letters. I really don’t. I just do not think they went there in the first place [laughs].
Finally, there were messages about the need for greater professional awareness of and support for clinical trials. Fenella felt strongly that more clinicians should get actively involved in research to improve care for their patients. “If you’re not involved in research, why aren’t you? Go out and get some training or go to some lectures and get out of the rut. There’s something very exciting about research, and I think that it’s about doing the very best you can.”
Since being in a Phase 2 trial himself 15 years ago, Tom has become a consumer representative in Scotland advising on research. He believes it is important people are given the right information and are able to challenge what they are told.
Tom believes a public website listing available trials and eligibility criteria would be a good...
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But I’m involved with CACTUS, which is the cancer clinical trials unit for Scotland. I’m the patient representative on the executive committee for that, and I was talking to one of the guys there, and I was talking to someone else, maybe it was the lung clinical studies group, about a website for clinical trials. And they said, “Oh, well, it’s very difficult” and all that, because we spoke about it before as part of the West of Scotland cancer network, the lung cancer part, and we said then the professionals weren’t too keen about putting available trials on a website or anything like that. He says, “No, we don’t want people phoning up and demanding to be put into trials.” I said, “Well”, I said, “It’s not quite that.” I said, “It’s a case of putting up what is available, but also having on it that these trials are not available, are not suitable for every patient, and every patient’s not suitable for these trials. It’s up to being acceptable and the many different aspects.” But it would be interesting for people to be able to say to their consultant, “Well, what about this trial, what about that trial? Explain it to me, is it feasible for me?” I says, “Whereas just now people just don’t know, and it’s up to the physician, the oncologist, whoever it is, to tell the person about a trial.
Now, that medical professional might not be too interested in that particular clinical trial, therefore he won’t, or he or she won’t offer it. There’s also the fact that, with all due respect, there are medical professionals who don’t like losing their patients to somebody else, so if they’re not doing that trial but somebody else is, they don’t want to lose their patient to that other professional. So I said, “There are various aspects of it. I think people need to be aware that there is a possibility of trials without it always having to come from their clinician, like I say, who might not be into clinical trials.” “Well, that’s too much work for me, I’m doing enough.” Because there is a bit of work involved in them, because they’ve got their own NHS, probably all their own private work as well, some of them - no disrespect meant. So there is a workload aspect probably too, but I think people should be allowed to question, “Well, can I go into this clinical trial? No? Why not?” and if they’re not suitable then that’s fine, you know. But yeah, there should be something where people can challenge the chance or the opportunity of clinical trials.
Last reviewed September 2018