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Gill - Interview 10

Age at interview: 54
Brief Outline: Gill discovered she had breast cancer in 2007. She would have liked to take part in a trial to help other women with breast cancer in future, but none was available.
Background: Gill is a primary health care organisations coordinator. She is married with 2 children, aged 20 and 17. Ethnic background/nationality' White British.

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Gill has worked for several years in research management in the NHS, and has a strong commitment to high quality research. When she discovered she had breast cancer just over a year ago in 2007, she was hopeful that there would be a clinical trial she could enter. She was surprised and disappointed that no trials were available, especially as she was being treated at a top specialist breast care unit in a teaching hospital which she expected would be running trials all the time. The only trial available at the time was for post-menopausal women with breast cancer, but this did not apply to Gill.
 
She would have been willing to take part in any kind of trial comparing standard drug, chemotherapy and radiotherapy regimes with newer treatments, and would have had no difficulty with the idea of being randomised to either the standard or the new treatment. For example, Gill was offered the use of a ‘cold cap’ during chemotherapy, a cap filled with ice which cools the head with the aim of preventing hair loss. Although some trials have been conducted on cold caps, there is still uncertainty about which type of patients will benefit from it and under what circumstances, so this would be a good area for further research. She would also have been interested in trials of interventions to manage the very distressing menopausal symptoms which she has been having since her treatment.
 
Gill chose to have a lumpectomy with radiotherapy, rather than a mastectomy. She would not have wanted to be in a trial comparing lumpectomy and mastectomy, but that is because she feels there is already enough evidence that both operations have a good outcome, and the main decision therefore is around personal preference. However, she was offered a choice between a simple lumpectomy or a lumpectomy plus reconstruction, and felt this was an area where she would have been willing to be in a trial. She chose lumpectomy with reconstruction.
 
Gill’s main reason for wanting to be involved in a trial was not about any possible benefit to herself, but rather about advancing medical knowledge and helping future generations. She sees this a community responsibility. She would like to see more done to promote the public benefit of medical research, similar to advertisements encouraging people to donate blood to help others. It is government policy that patients should have the opportunity to take part in research, but more needs to be done to make that into a reality for many patients. Gill has done some research into how people are recruited into trials and thinks sometimes doctors are afraid to ask patients.
 
She has taken part in other types of research, including giving her breast tissue to a tissue bank and taking part in a questionnaire survey about appetite during radiotherapy for a dietician’s PhD. She has recently been invited to join a study of family history and cancer.
 

Doctors may want to protect their patients after breaking bad news, but they should not be afraid...

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 a, 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, 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, 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, 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, and do some advertising. There should perhaps be some, something, some money put into advertising.
 

Researchers need to think carefully about how they recruit patients, and consult at an early...

Researchers need to think carefully about how they recruit patients, and consult at an early...

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And I mean there is no kind of manual, as far as I can see, that says, ‘This is how you should do it.’ Every research project is different, so you’ve got to weigh up all sorts of issues around your recruitment. But that, but maybe it’s not - maybe the way in which research is funded and bid for, you have relatively little time, really, to respond [laughs] to bids. And I would have thought that probably the bit that might get missed out is paying a lot of attention to that first part, really - getting that methodology of the recruitment and the approaches and how you’re going to do that right. And talking to the right people, if you’re recruiting patients making sure that you’ve, you know the clinical setting in which you’re going to recruit and that, that you’re not going to be doing something that just won’t work.
 
I mean, I know from years of ago being involved in health visitor studies, I mean I was on the management side, managing the research within a, this was in a hosted organisation. But, you know, researchers would come and talk to the health visitors having got their protocol all sorted out and probably got their funding, and were then talking to the health visitors to say, ‘We want to recruit mums and babies in this area and do this and do that.’ And the health visitors would say, ‘Well, I can tell you now that that won’t work because they won’t turn up to this or they won’t do that or.’ And so the whole – and I’m amazed, I would hope that less of that happens now but certainly ten years ago that was common. You just think,’ This is such a waste.’
 

Gill knows that it is NHS policy to offer everyone the opportunity to be involved in research,...

Gill knows that it is NHS policy to offer everyone the opportunity to be involved in research,...

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I was struck, really, I think with the R&D [Research and Development] strategy that in there is something about - I don’t know the exact words - but something about people should be, it’s something that you should expect, both as a clinician and also as a patient, potential patient, the opportunity to be involved in research, that it should be an expectation. Well, if it’s going to be an expectation I think there’s going have to be an awful lot more done towards making that into a reality. Because if it is an expectation that I as a patient should feel that I should be offered research, then [laughs] I’ve been let down somewhere along the line. But I mean these are just words aren’t they? And I think it’s going to take a lot more to get to the point where that is that is the case. 
 

She assumed her local hospital would have plenty of research going on she could join, but when...

She assumed her local hospital would have plenty of research going on she could join, but when...

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So when I got my results, at that point I must say I didn’t think about anything much except the, the difficulties of just coping with this diagnosis. But I was seen at one of the, what I understand to be one of the best cancer units, breast units in the country, in [city]. It’s got a very good reputation, I know that. So I thought, firstly I thought, ‘Well, I’m in good hands here.’ And secondly, it was a little while later but I did think, ‘Oh, well, perhaps there will be an opportunity for me to be involved in some research.’ It was rather strange being on the other side of things. It’s difficult when you look at it dispassionately to know how you will feel when you’re going through treatments, but I think all the way along the line I did feel that I would like to make some contribution.
 
I raised it originally with the breast care nurse at my appointment - yes, my appointment where I went for my results and found that I’d got cancer. In the discussions afterwards, after I’d seen the surgeon and - or the - yeah, the consultant and she’d given me my diagnosis I then, as I say, went and had a chat with the breast care nurse. And it was, actually it was during the course of that discussion, because she’d talked to me a bit about what I did, and so I did ask at that point and she went, she did go and sort of make some enquiries but she said there wasn’t anything. The only thing that was happening at the moment was a trial for post-menopausal women, which wasn’t suitable for me at that point. So no, and I don’t know whether - I think that the focus within that particular hospital is very much on the surgical side. I think that’s their sort of strength and their research strength but whether - I don’t know. And I think in fact the operation I had with the reconstruction was, is probably quite new, or at least I got the impression that it might be quite new and presumably there’d been research around that. But there didn’t seem to be any trials going on at the moment for surgical techniques. And nothing - in the chemotherapy, I don’t, in fact I’m not sure that I even enquired at that particular time about the chemotherapy one, but it certainly wasn’t offered to me.
 
But as I say, I did bring it up originally with the breast care nurse and she said no, there wasn’t anything suitable.
 

Gill would want to know a lot about the interventions being tested. She’d take part if there was...

Gill would want to know a lot about the interventions being tested. She’d take part if there was...

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I mean you’d need to be very clear about what each one entailed and what sort of effects it would have. I mean, I’m thinking again of the chemotherapy one, you know, if you’re in a trial for looking at different types of drugs and you’d want to know what sort of effects each was having, so that you - you would need to know that whichever option you were offered you could feel comfortable with. So you’d need to know about all of those. I mean it’s quite a lot of learning and input, I think, from a research team to give you that sort of information, but it is important I think. Yeah, it would be important to me.
 
What about placebo-controlled trials? What would you feel about being offered that?
 
[Sighs] I don’t think, I don’t think it would bother me particularly. I’d be quite happy to be involved in something like that because, because I understand the reason why placebo trials are offered, that, you know - and actually even, I mean placebos are there in order to make sure that any - this is my understanding - that it’s blinded then. If you’ve, if you don’t, if you have a placebo you’re taking something, so there is an equity in terms between two groups, between - in terms of you’re actually taking something. You don’t know whether it’s the actual drug or it’s not the drug, and therefore you’re not going to be influenced by -your two groups are perhaps more equal, so that you don’t know as a patient whether you’re getting the right, the trial drug or not but you’re getting something.
 

Would it depend on what kind of aspect of the condition it was for? I mean I was thinking say with menopausal symptoms that that might be quite a reasonable area--

Yeah, yeah.
 
--to accept a placebo. If it were chemotherapy maybe you might feel less happy about it. I don’t know.
 
Well, again I think it’s probably back to the idea that, that I wouldn’t want to be offered something that I didn’t think was at least standard practice [laughs]. So if it’s not standard practice to give you nothing, then I don’t think you should have nothing. So it’s about, you know, the genuine uncertainty, again, between two different types of treatment. So in chemotherapy or yeah - I mean if there was in menopause it may be a genuine uncertainty that we don’t know actually whether nothing is as good as something. But actually in most, in chemotherapy it’s about two somethings, isn’t it, rather than something and nothing [laughs]. So I don’t think I’d want nothing if I was told that actually standard practice is to have something, we just don’t know which something. 
 

Gill thinks people should not go into a trial expecting it will solve their immediate problems....

Gill thinks people should not go into a trial expecting it will solve their immediate problems....

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Well, I mean I think it’s a bonus if you benefit yourself, but I think realistically most research is about future. And it may be future a year ahead or it may be, you know, much longer term. You may be only contributing to one small element of what’s sort of actually a much bigger picture. But I think that you shouldn’t go into research necessarily thinking, ‘I’m going to get some great benefits out of this.’ I mean, there may be other, there may be benefits. There may be things like extra monitoring, or more appointments, or you might, you might get some sort of better feel about treatment because of those aspects. But I don’t think I would go in thinking, ‘If I go into this research it’s going to cure my menopause symptoms’ [laughs]. Because that’s probably not, not going to happen overnight, but hey, you never know [laughs]. 
 

Doctors may want to protect their patients after breaking bad news, but they should not be afraid...

Doctors may want to protect their patients after breaking bad news, but they should not be afraid...

SHOW TEXT VERSION
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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. 
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