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Sarah - Interview 38

Age at interview: 61
Brief Outline: Sarah volunteered for a placebo-controlled trial of a drug intended to help women at risk of osteoporosis. It involved daily injections and eventually she dropped out of the trial. (You can see Sarah talking more about her experiences on the healthtalkonline site osteoporosis, Interview 27).
Background: Sarah is a retired hospital ward clerk. She is married, with 2 grown-up children. Ethnic background/nationality' White Welsh/English.

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Sarah worked in a hospital and saw a notice asking for volunteers for a trial of a drug for osteoporosis in 2002. Volunteers needed to be women over 50 who were taking hormone replacement therapy and who thought they might be at risk of osteoporosis. As Sarah had broken several bones she thought this might apply to her so she volunteered. She had a body scan and was told she did indeed have osteoporosis and so was suitable for the trial.
 
Women involved in the trial were asked to inject themselves in the stomach but they would not know whether they were injecting the drug or a placebo. At first they had to do two injections a day but this was later reduced to one. Sarah stayed in the trial for several months despite it being quite unpleasant. However, she had a distressing period when a close relative had to spend time in hospital. She started to associate the smell of the hospital with the smell of the substance she had to inject, and felt she could not continue. The trial staff did not put her under any pressure to stay in the trial and understood her feelings. Sarah’s impression is that recruitment to the trial was not very good and other people had also dropped out, perhaps because it was a big thing to ask people to inject themselves daily.
 
Sarah assumed that her GP would be told that she had been diagnosed with osteoporosis. However, in 2008 (a few months before being interviewed) she broke two bones in her spine and discovered that her GP had never learnt of her diagnosis. Now she feels angry that she could have been taking medication all that time to try to stop the osteoporosis from getting worse if only her GP had known. She feels there could have been much better communication between the trial and her GP.
 
She has since volunteered for another trial of medication to control lipids as she has familial mixed hyperlipidaemia. After two weeks in the trial she was told she was not eligible after all, because they only wanted to include people who were already taking statins as part of their treatment. Despite these mixed experiences, Sarah would still volunteer again, because she believes research is the only way to improve medical treatments and find out what works. (You can see Sarah talking more about her experiences on the osteoporisis healthtalkonline site, Interview 27).
 

Sarah found it quite inconvenient continuing the injections even when she was on honeymoon –...

Sarah found it quite inconvenient continuing the injections even when she was on honeymoon –...

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And when did they tell you what the actual treatment involved, having to take these injections?
 
At the – now, I’m just trying to think - after the scan, after the results of the first DEXA scan when I went back to her. And it’s a few years ago now so I’m just desperately trying to remember the sequence of events, and so much has happened in those years.
 
This was ’02.
 
Was there ever a point when she said that to you that you thought “Ooh, maybe not, actually”?
 
[Laughs] No, I get myself so far into things, I don’t like to back out [laughs]. I didn’t want to disappoint her, because she was saying “Oh, it’s wonderful you’ve come forward, so few people have” [laughs], so you feel a bit obligated, don’t you? I do.
 
So you, you really felt kind of that you had a duty to them to --
 
Yes.
 
--to carry on? I mean it’s interesting that so few people took part. Do you think maybe that was because what they were asking was actually quite a big ask?
 
Oh, I’m sure it was, yes.
 
And if I was a bit braver perhaps I’d have said no as well [laughs]. It was just such a nuisance. I even had to go on holiday, abroad - in fact it was my honeymoon -and I had to take the injections with me and have a letter to show at customs, in case they thought I was a drug addict.

 

[Laughs] So, just tell me a bit more about the actual process of doing it. What was it like having to take these injections?
 
I really had to steel myself. Every day I had to steel myself to do it. I’ve got a bit of a big tummy anyway, but I could still feel everything, taking a lump of stomach and [gestures] - like that. Oh, swab it, of course. And oh, I don’t know, it’s making my mouth go dry. I don’t know if it’s fear or what, but I was doing that, as I say, for months before I realised that I really, really could not cope any longer.  
 
 

She withdrew from the trial when a family member was taken into hospital. The smell of the...

She withdrew from the trial when a family member was taken into hospital. The smell of the...

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I didn’t realise what it was involved in all this, because I had to inject myself, into my stomach, which I found quite a pain, because I had never injected myself before, as a lot of other people haven’t, obviously. There was - yes, so I was having to do that morning and evening to start with, twice a day, then it went on for quite a few months. I was prepared to do it so long as - then something happened in my life, a very close relative was in hospital. The smell of this - I didn’t know if it was a placebo, nobody told me if it was the real thing or a placebo, but I was pretty sure it was the real thing because it just smelt different - I just found I couldn’t do it any longer.
 
And when you went to them and said, “I’m sorry I can’t continue any more”, what was their reaction to that?
 
Oh, they were very good about it. They’re probably used to people giving up on these things.
 
There must be lots of reasons why, but I thought this was a - I know I was not that keen on it in the end, anyway, to say the least. But that was really the deciding factor was having a member of the family very ill and having to smell the hosp- - I know even working in the hospital you get used to it, but it’s just on a different level smelling this. It’s terrible. It’s just making my mouth dry and my stomach wobble.
 

Sarah wouldn’t take part in another trial involving anything invasive. She started a trial of...

Sarah wouldn’t take part in another trial involving anything invasive. She started a trial of...

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There are a few, a few other things that I’d quite like to ask about. I mean one is from your experience of that, how you would feel now about going into another trial, whether you’d volunteer again?
 
Not for an invasive one I wouldn’t. Definitely not injections. Anything else I don’t mind [laughs]. Tablets, yes. I did actually start another one with -because I’ve got very high cholesterol - it was a trial for lipids, because I’ve got familial mixed hyperlipidaemia, and they can’t get my lipids and my cholesterol balancing. But unfortunately, I was on it for a couple of weeks and then I was called back to say that the drug company didn’t want me after all because of the, I wasn’t actually on statins, I was taking some – what was it? cipra?* Anyway the tablets I am taking aren’t statins, and they wanted somebody on statins.
 
How did you feel about that? Were you disappointed about that?
 
Yes, I was, because he said, the doctor had said “Oh, people who use this definitely lose some weight, and it’s under guaranteed that your cholesterol will go down even further” - even further, it’s still quite high, but further [laughs]. And yes, I was very disappointed about that one, because I thought, “Miracle drug, it’s going to help,” [laughs].
 
I mean that is something that presumably they could have found out before you’d got that far down the --
 
Yes, because he was really excited looking at the check list saying “Yes, yes, yes, you qualify for all of this”, and then go back in embarrassment, was not needed after all [laughs].
 
* Ciprofibrate (brand name Modalim)
 

Doing your best to help others is important and– if being in a trial also helps you as an individual...

Doing your best to help others is important and– if being in a trial also helps you as an individual...

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Well, all you can say is you’re doing your best for, to help other people and mankind, and we won’t get anywhere if nobody volunteers for anything. You know you’re in good hands, whoever’s looking after you will make sure that nothing – well, hopefully [laughs] nothing too awful happens to you. And it may give you some benefits. At least you know in your mind you’ve done something to help people. And if there aren’t that many of you with the illness et cetera it’s very important you volunteer. Yeah. 
 

The trial staff said they’d make sure Sarah’s GP was told that she had osteoporosis. Later she...

The trial staff said they’d make sure Sarah’s 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.
 
--GP
 
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].
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