The other thing I felt as well, I was really, really lucky – nobody told me to do this, it was only because my mother had had cancer and passed away in a hospice – I contacted the local hospice. And a friend of mine, whose husband had passed away of another type of cancer a few years ago, said, Get onto the Macmillan nurses And I said, Why I thought, That’s, they’re just for terminally ill patients they’re not. That was the misinformation that I’d got in my head. And they were really, really supportive, really, really helpful. The only thing I thought, it was sad that they don’t have a lot of information about the treatments and how they impact on patients. Therefore if they had that information, knowledge is power and that information could have helped them to help me, in retrospect.

Ah, that’s interesting. So, like about the side effects of a specific drug more for Macmillan nurses –?

Yes. So when I couldn’t get hold of anyone at the hospital, I was being offered, I was, they were really, really incredibly good, a lovely team of people at the hospice, and a colleague of mine actually works there as a volunteer doing massages for, for the patients, both the ones that are actually in the hospice and the ones that are day patients, and they were very, very helpful. But it would have been nice if, when I couldn’t get anyone straight away at the hospital, that the, say, the Macmillan nurses would have been able to have access to some of the information or privy to some of that information to have helped me if I’d phoned them second.

Are there any other things that you’d want to say to professionals about how they run these kind of trials and co-ordination of care with other members of your healthcare team? Or anything that you’d want to get across to professionals?

I don’t know how much information they feed back to your own GP. My own, the GP that I went to when I got diagnosed was very, very helpful, and he liaised with the Macmillan team nurses, so that when they came to see me one, at one particular point, she noticed I was very down in the dumps and depressed, and she must have contacted him. And he phoned me up and said, Would you like to come in and see me? I, you know, maybe we can give you something to help you sleep or whatever And he was very supportive in that way, in a general way. But I don’t think he had much information or knowledge about the side effects and what I was going through, what the nitty-gritty of the treatment was. And I, in looking back I feel that that could have been better. But I understand they’re very pushed for time. Whether he’d have been able to read all that, I don’t know. But it would have helped him, had I gone to him with any issues, that, Yes, I know As it was, I was just told, don’t go to your GP. Come to us But it’s a long trek to go and see them for every little, every little worry. I didn’t have many, but . . .

Well, I don’t know how much the professionals are involved in these trials. I presume that they must liaise, they must be told about them.

As in your GP?

Yeah, exactly, your GP. I think it would be a good idea if they, if GPs, doctors got together with people doing these trials and compared notes. There may be things that, you know, your doctors, GP could be doing better, you know, as a result of these findings. It must be, you know, it’s obviously difficult for GPs, because they just haven’t got the time, you know, if you’ve got sort of six doctors and, I don’t know, five thousand patients or whatever, they obviously can’t give you individual treatment for very long. But I think it would be a good idea to try and liaise closely with some of these trial, trials that are going on and take note of things, of findings, and maybe change one or two things, you know. I mean I’ve got no, no complaints with the GP. I’ve, my surgery is pretty good, you know, the doctors are all good and quite sympathetic. But I think there’s a few things maybe that could be changed in conjunction with the, you know, these trials that are carried out.

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].

I must say on the matter of letters to GPs what I notice is that even though I’m going to, I think, what I think is one of the best places and the doctors I see I’m sure are excellent, there are almost always minor or very often minor errors in these letters that go to the GP. They’re usually completely trivial errors which really don’t matter, but little factual things that are wrong. Occasionally, they’re more serious, like a case where I had talked about – there’s a drug I take to deal with this side effect that I get of gut discomfort, and I was going to drop the dose from 30 milligrams a day to 15 milligrams a day. But the doctor I spoke to, or the secretary who transcribed his report, misheard, and so on the letter that went to my GP it said I was going to change the dose to 50 milligrams per day [laughs]. It didn’t matter because I was paying attention, and anyway the prescription was something I’d sorted out with my GP, but you could imagine that in other circumstances it cause could cause a problem. But the striking thing was that, with the best will in the world and best staff and very good staff, there were very frequently these little errors.

So I thought there’s a lesson in that, and I feel that the lesson is that patients should be involved and should see these messages that go to and fro, see their own progress charts, their drug charts and so on, because they’re the people with the most intense interest in what’s going on, and often they’re the best, most detailed knowledge of the facts.

And most likely to pick up the mistakes.

Yeah, yeah.

I’m actually a doctor and I work in public health, and I was working in [county] and I was in charge, I’d just been put in charge of the diabetes strategy there, and so it made me interested in the fact that nearby they were running a diabetes intervention trial, and it was for people who were well but who might be at high risk of diabetes, so people with a family history. So I decided to just go along because I thought Well, it would be interesting and I’d be interested in participating, I’m interested in research. And what happened in that trial is they, screening well members of the public, are looking for people who had high blood sugars but not, not diabetic levels, to see whether certain medications would prevent diabetes actually coming on, so people who were at high risk of developing diabetes. And what really surprised me was I actually turned out to have the high fasting blood sugar, so I – which made me eligible to go into the full trial itself. And I, I hadn’t anticipated that at all when I went into it. I was just sort of seeing what they did and you go along and you have your blood taken. And then they called me back and I had the high fasting blood sugar, which meant I was eligible for the trial. At that point they said Where there any questions? and so I started asking the research nurse whether there are other interventions like exercise and diet which could help, and she more or less said no, and she was very vague, wasn’t very sure, but she didn’t think there was otherwise they wouldn’t be doing this trial.

So I was rather upset at the lack of information that was forthcoming, having had a high fasting blood sugar, and so I decided to go off and look it up myself, and so I went on and found out that, you know, diet and exercise actually do – you know, there are other things you can do as well as taking medications. And so I was a little concerned that the level of staffing at the trial, that their staff were so poorly informed about this – which was fine, I was still going to go into the trial. And then a routine visit to my GP, you know, just to get a renewed prescription and he had in front of him a piece of paper telling him I had a high fasting blood sugar, and I was really annoyed because I had not been consented for my GP to be informed anything about this, and at that point I decided I would not go into the trial, because I just didn’t think it was ethical that they had breached my confidentiality in this way, so I just withdrew from the trial and didn’t do it.

Footnote’ The UK Clinical Research Collaboration points out that current ethical guidance is that if you agree to take part in a clinical trial, all your trial records and any information that is collected about you will be kept confidential, in the same way as your medical records. The researchers cannot tell anyone that you are in the trial without asking you first.

I hope they will tell us the results because I would be really interested to know. They have been in touch with my GP since to find out how I’m going on, so they’re following my progress, and presumably they know the illnesses I’ve now got to cope with. And it’ll be interesting to see, you know, if anyone else is in a similar situation.

Are you actually going for follow-up appointments with them where they ask you what your health is like now?

No, no. I just had a letter from the GP saying she’d had a query from the people doing the trial, and was it all right for her to give them information and I just said, Yes So that’s, that was it.

Okay. So they’re not contacting you directly.

They haven’t done, no, no.

When did the trial actually happen? Which year was that?

When I entered it was, it was the very beginning of 2003. It might have been the end of 2002, because I had – it must have been the end of 2002, because I actually started the course on the first, first of January or the second of January 2003. It was the month of January I went.

Do you know how long the trial is going to be running?

No I don’t.

So you don’t know when you might expect to hear results?

No, no, but now that I’ve thought about it I might ring up and try and find out.

Did they say anything to you in the information they gave you at the start about whether you would get feed-back on the results?

I can’t remember now, and I can’t find the stuff. I don’t know whether I kept it or what. I can’t find the original information I had.

And what would you say to health professionals about why it’s important for people to have results of trials?

Well, I think if they’ve been good enough to take part in it, then I think that, you know, if they want to know the results they should be able to get them. A lot of people, of course, don’t, don’t want to. they’re not interested. But I would certainly like to know what’s happening. Yeah.

I went to visit my local doctor and he said, You’ve made up your mind? And he read exactly the same details that I gave him and he shook his head and pointed out the same things. And he said, the only thing he advised me to do was, Do nothing until you’ve seen your consultant. Don’t answer the letter, don’t do anything. But he said that, he said, All I can say to you is have you made up your mind? And I said, Yes. Nobody’s going to change my mind. And he said, Well, put it this way, if any drug company tried to put pressure on you I want to know. And then I said, They can put the pressure all they like but it wouldn’t work because my answer is no and my no is no.

I went to my consultant and I gave him the details and I said, I’m not going on it. And he looked at me and he said, Why? I said, Read it. And he said, Oh. He said, I said, It’s caused so much argument in the family. My son is annoyed with me for even considering it. I said, He doesn’t understand that I didn’t know all the details. I said, And it’s caused a bit of friction in the family, I said, And they’re all arguing with me I shouldn’t do it but I’d already made up my mind not to do it anyway. And he said, The most important thing is I wonder how long these trials have gone on? I said, I don’t care. I’m not doing it. And he said, No, I’m not suggesting you do but I’m curious how long have they been going on? I said, I don’t know and I don’t care. I’m not doing it. He said, Okay. I agree with you. You don’t have to contact them, I will do it myself. And while I was there he got on the dictaphone and he gave them a message that I would not be doing it, that I would be having my FluCy. So no pressure was put on me at all. I was totally allowed to make up my own mind, and in all fairness the drug company have not, well, the drug doctors have not been on to me. They’ve not bothered me at all.