So I whipped in and went straight upstairs and instantly introduced myself, and I was amazed actually, because it was a big open hall and, but terribly quiet and organised with loads and loads of people around, and enough people instantly to be able to greet you, so there was no waiting at all. They made, they were really nice people all the way through this whole experience, the people were lovely, and they said, they explained what you needed to do.

They explained that it would be, you would have to fill some forms in, and then you go and sit down, and then you have to, they show you on a mock-up one, that you’ve got a button that you press, and that you’ve got an interactive screen in front of you. And then at one particular point there’s some headphones you take off and put on, and they said that lots and lots of people would be doing this and indeed, you can see them all the way down the thing, all sitting in a row. And so then they said, Are you ready to get started And they give you some practice ones. And so then I got going.

I think it’s very important, because you get to know the staff, and I suppose in some way they’re a bit like, they’ve become like friends, you know [laughs]. You get to know them, and you know, I quite often think, Oh, that’s quite nice, actually Because I’m going up to see them and you chat and you catch up, and because you can be there for half a day or a whole day, and it can be quite nice because sometimes you’re just lying on a bed, you know, once they’ve got everything into you, you know, I’ve sat and read magazines and they put the radio on. And there are other times with the research, you know, you’ve got to concentrate more on different things, but quite often you’re just, you know, it can be quite a nice day [laughs]. Quite relaxing, you know.

[laughs] And at, are the research nurses who are there now, have they been there quite a long time?

Well, the ones that I know, yes. Yeah, they have. I think I’ve known them from virtually at the beginning.

Yeah, and what is it about their manner that you, you know, if you were trying to encapsulate what it is that they do so well.

Well, they’re very friendly.

Uh-huh.

And nothing’s ever too much trouble, you know. Sometimes you can be all wired up with all sorts of different stuff and, you know, you think, I really need to go to the toilet And, you know, you think, Oh God, what a shame, they’re going to have to disentangle me from all this stuff it’s never a problem, you know, and they’re always, you know, they’ll ask you, you know. They always look after you and make you feel very comfortable.

Yeah.

So I’ve got no complaints whatsoever. You know, they have looked after me very well.

I’ve actually got very, quite friendly with the actual nurses, you know, the research nurses. In fact the last time I went I was chatting to one about her daughter’s marriage and so on and so forth, and you actually, they’re almost like friends now, because I’ve done it so often. I usually go in with the attitude of, you know – my friends at work say, You must be ma because the only thing, you have to take time off work for it, you know, they don’t give me annual leave at work. They do, they will give me special unpaid leave, but they won’t give you anything, you know, either its annual leave or you make up the time. And I actually was saying to one of the nurses last time I was there, you know, They think I’m mad at wor, and she said, We think you’re mad too [laughter] Because some of the, the last couple of studies have been quite invasive, but it was my choice. I don’t have to say yes. You know, they send me lots of papers. There is a lot of the information they send you up front about what they’re going to do.

And towards the end of my pregnancy I did actually end up in hospital feeling very unwell with a pre-eclampsia scare, and they thought I was at the start of developing pre-eclampsia, and so the research midwives actually came up to see me on the ward and say hello and enquire after my health. And luckily I was well enough to go home for another six weeks. I didn’t develop pre-eclampsia but I did end up in hospital again, right at the end of the pregnancy, when the due date had already passed, with high blood pressure. Again, the research midwives came to see me again, and we had a joke that they were getting plenty of useful data from me.

Is there anything you want to say about sort of that relationship and their manner, and how that’s contributed, helped you feel confident in the research?

Right. The research midwives were obviously very experienced, very reassuring. They were a bit apologetic about me having to have extra blood tests and the inconvenience that might cause. And I knew them by first names, they knew me, they came to visit me when I was admitted, they came to visit me after I had the baby, so it was a very pleasant relationship, and they’re nice people.

People often talk about the trust or otherwise that they have with the research team. Did you feel that you were able to trust them?

I think it’s more difficult to talk about trust when you’re taking part in a very large generalised study like UK Biobank. But at the, at the sharp end, being a participant was a very efficient, pleasant process, the people you dealt with were very nice. Where there’s been a more intimate relationship, like with the research midwives, they were very nice, they were very supportive, they were very caring of me in a high risk pregnancy, and shared our joy when our healthy baby was born.

But it was just the whole reassurance that There’s a team here. We want to work with you, and as time goes by, there’s going to be lots of questions, there’s going to be lots of things that we’ll ask you, you’ll want to ask us. Maybe your family want to get involved with us about it. We’re here to help, and nothing will be too much for us And I had to say they’ve been good to their word. I mean, everything over the period of time, two and a half years now, anything that we’ve had a question about they, if they couldn’t answer it, they’ve come back to us. Otherwise they’d have been at the end of the phone to work with us.

And again, they were faces we knew. It wasn’t a brown envelope coming in the post with lots of paper, Could you please fill this in It was, Please come and join us and we’ll take it from there

That’s interesting, so that level of personal sort of affiliation to the team was actually quite important.

I think it was very important.

Because I like to see a face at the end, that I’m dealing with, you know. Someone can ring you up and they can sound nice on the phone, and they can turn out to maybe be not so nice. So when you get to know someone and you feel that you’ve got their trust, then I think it’s much easier to be open and willing to answer questions and to do things. And some, a lot of the questions I’ve been asked and a lot of the things I’ve got involved in have been very personal. But I haven’t, I don’t mind sharing those issues if I trust the person that I’m discussing it with.

I’d forgotten about this one, but I was asked to provide an extra blood sample. This was during the same period of time, so during the course of my breast cancer surgery. And it was providing a sample for what I presume was a local study for blood marker assays. I don’t know what they are [laughs]. And I just got a leaflet and was asked if I would give a little extra blood, during a normal blood test a little extra blood which would then be used for doing research around cancer. And as I say I can’t remember what assays mean, because I’ve only just found this leaflet again. I’d forgotten all about the fact that I had done that.

And in fact the nurse who took the blood didn’t know anything about it. So I did ask her at the time and she didn’t really know any more about it than that, than the information I’d got. So, yes, it – yes, it’s not, it’s not hugely helpful, this leaflet. [laughs] Well, it’s two sides of A4, which really doesn’t say a great deal. I mean the purpose of the study is that small two paragraphs there, very, very small.

I think it would have been helpful for her to have known something about it. She, she just sort of, Oh, yes, I think I know what you’re talking abou sort of thing. But, yes, I think so. And had it been at a different time I would probably have asked for more information on this one.

Because I think you talked last time about problems with recruitment often stemming from a lack of involvement of –

Yes, yes.

— those staff at the front line.

I think that’s true. I mean, it doesn’t inspire confidence if the staff involved don’t know what it is they’re taking the sample for, and can’t tell you a little bit more about it. I mean it doesn’t, it isn’t a lot of information that they would have to carry, I think, but at least to know what the basics are about this. And then, you know, if there are more detailed things you want to know, to be able to point you in the right direction for somebody to help I think is really important. Because it, you know, gives you confidence that somebody knows what they’re doing and it’s going to the right place.

And with the tissue bank, was the person taking consent informed about the study?

Yes, yes, she was much more involved. I think she probably did this as her full-time career, [laughs] full-time job. She was actually sitting and talking to patients. As part of your clinical appointment there was a sort of ten minutes with her to, if you wanted to do that, to talk through the donation of surplus tissue. So that seemed much more structured, and well set up, and I assume that’s been going for some years.

I’m not selfish. But other people who don’t go won’t know they can get help. They want to hide it. Why hide it? It isn’t going to go away. You’ve still got it.

No, but it could help them if they went.

Yeah. They don’t see that, you see.

No?

it’s, well, I have to say they’re selfish because it’s like in their mind they say, Oh, I’ve got it. What about me? What about me No, it’s not about you. What about other people And they never do it. And that’s what really annoys me. Because research, to me, if you don’t do research, how does people know what’s going on in this world? How do they conquer the black plague? How do they conquer cancer? How can these psychologists or psychiatrists come, combat mental health problems? They can give medication out, and the only way they know the medication is by researching people. See, that’s what annoys me with a lot of people.

It sounds as though overall you’ve been very happy with the care you’ve had and the way that the staff have been.

Yes, I can, there’s no way can I disrespect or knock the treatment I’ve had. The NHS and the hospital I go to and the treatment I’ve had, I highly regard, well, I respect. And if they ever ask me to do another research for this, I’m your man. Some people might say, Oh, I’m a lab rat But in my eyes without the lab rats you’ve got no research. And that’s, that’s my motto anyway.

So it’s not so much cynicism. it’s more a quid pro quo, isn’t it? I mean, you scratch my back, I’ll scratch yours. And one of the things I’m very conscious of is that I’m getting better care than if I hadn’t have joined the trials, because I’m being supervised much more closely. For example, I’m pretty sure that I wouldn’t have got any scans at all until I was pretty ill, had I not consented to join the trials. And it certainly wouldn’t have become apparent that I’d had, that the tumours were spreading. That only came to light because of the fact that they wanted me to join the first trial. So, and I noticed the same when my father was very ill, and this would have been 10, 15 years ago, that his care was much, much better than perhaps we could have expected had he not consented to join the various trials.

I think you feel – one of the things I think you feel when you’re diagnosed with cancer is your lack of control, your loss of control. You – I’m in a job were I control an awful lot of things, I control a lot of things that go on, I control a lot of people, a lot of processes, a lot of systems. And suddenly something is happening to you that you can’t control, and I think that is a horrible, horrible feeling. And I think that you have to build up a team around you that are sort of like Team Karen that are fighting for me to survive. And that’s your friends, it’s your GP, it’s the people at the hospice, the day hospice that I went to, it’s the people at the hospital.

And I think if you can build that up and feel as if all those people are rooting for you, I think that it makes you feel as if you’ve got a little bit of the control back. So I think that’s just a way of looking at it. I’ve probably not looked at it that way before, but it’s a good way of looking at it, that you’ve got a team around you helping you.

And I think you also need a mentor at the hospital. I think you need to build up relationships, and not just be a number, and I think that by being on a trial you end up being a bit more of a person and a bit less of a number, and I think that’s really important. And if I can do anything to help, like this interview, in order to help me get better treatment I will. If it helps other people, great, but I’m selfish and it’s me.

And the kind of information that you’ve been given about these different research projects, what are your feelings about the way that the information is presented?

it’s fine. I mean, some of it is obviously, it does go into quite a lot of detail and it’s beyond, you know, I think most people’s sort of knowledge. You know, it’s quite hard to take in. But I mean the nurses and doctors that I’ve encountered are always more than willing to go through and talk through it with you. And they also do say in the letter that if you want to discuss it with them you can phone them at any time or you can discuss it with your own GP. So you’ve got plenty of opportunities to sort of find out more about it if you want to.

Is there anything you think they could do to improve the information?

I suppose it’s difficult, because I mean I – obviously you like to know what’s happening to you, and there have been times where I can remember one time reading something and I’m thinking, Oh God, I don’t really understand that. That sounds quite invasive But I talked it through with a nurse that I know, and when she explained it to me I thought, Actually, it’s not that bad So I suppose that it could be off-putting to people when you get, you know, a big wad of paper and it’s all medical terms. But the fact that if you do, if you are unsure, do talk it through with somebody because you’ll get a better idea.

Would you have liked better written information? I mean, was it just that it was so dry and difficult to read that probably the information was there but it wasn’t understandable, or was it not even there until you asked questions?

No, it was there. It was there, but it was just in clinical terms, really. Yeah, I mean it was, and it was more like a contract than – it was saying what would happen, for example, if the trial went wrong and I needed treatment outside of it, you know, who would be responsible and what, if you like, laying out what their responsibilities would be, and would not be, you know? In other words I suppose it was a bit of a liability, a waiver to some extent on their liabilities. So it was, it’s a little bit daunting when you see it, because it was all steeped in technical jargon, trying to explain from a medical viewpoint what they were trying to do, but on the other hand not giving much away because they don’t want it to get in the public domain, and at the same time a contract with me so that I understood that I could say no at any time, but that I would be expected to do certain things if I stayed on the trial, and at the same time telling me what the different liabilities would be from their viewpoint.

Whereas when you talked to them, what happened when you talked to them?

Oh, much less of that. I mean, it was more personal when I spoke to them, but I had to ask the questions. You know, I had to say, Well what are they doing with this? What is it they’re really interested in you know. Well it’s the protein Oh the proteins, oh interestin, you know, Oh yes, they’re on the surface of the tumour, and that’s what we need to know, because what we need to know is that the treatment is actually going to stop those proteins from working. It gets in, and it affects this gene, and it stops it dead And I found out all things like that, the real detail, the stuff which I found fascinating, yeah? Maybe other people wouldn’t be interested.

And how have you found the interaction with the research staff, in terms of sort of the way they communicate with you and the information they give?

Well, I have to say I – this isn’t going to be a good view for everybody in some ways. Because the two that immediately come to mind, one of the women who was doing the lead on it, I knew her, and so she and I just used to, it used to be, Oh, how are you? I haven’t seen you for a while. How’s your dad Yes, he’s great it’s through her father, our fathers knew each other, and so we knew them because she was the same age as I was. So that was a curious re-meeting of people you hadn’t seen for years. So that, I obviously got looked after very well, [laughs] and I had no waiting on the appointments and so on and so forth. So, and actually the attitude that – I don’t know if it’s right for everybody, for everybody the way I would look at it. The informality without crossing professional boundaries is a real trick to pull off, and it works for me.

And was it just that one person that you knew?

Well, no, that was one in particular and, but that’s when I was of an age possibly where I would have been -and that was my second clinical trial, the ribavirin and interferon mix. The latest one, which is the one I did the biobanking for, she was, she’s either, she’d either done her, she’s either finished her F2 and doing her research – that’s right, she’d finished her training, so she’d passed F2. She was doing her research because she’d decided that general practice wasn’t what she wanted and so she’d gone, she wanted to drop more of the medicine and become more of a researcher. So she was doing this as her doctoral work. So, and she was equally. She was likely communicative because – I think – because she was doing research she wasn’t under quite so much time pressure to get so many patients through, but also she knew that I had information that was useful to her. And, yes, she was the one that took something like about ten phials off me.

The staff were great. There was clearly a research – I hate to use the word – but I think it was a student, or research assistant, the researcher, the key researcher. And he was, I was slightly worried about how clinically he, how well he’d be clinically in terms of sticking needles in me, because I wouldn’t know, didn’t know how much practice he got. It was quite interesting talking to them because that, so I did say, Well, how do you get practice sticking needles in? Because you’re actually quite good at it And I’ve, you know, after fifty blood donations I’ve had some good needles stuck in me and some bad needles stuck into me by people who should be quite competent. That’s why I was slightly worried about the researcher doing it. And he said, well, he admitted they practised on each other with their consent. So the team practised doing it on each other. And I don’t know whether I should say this, but you can strike it if necessary, but he did admit to doing a biopsy I think on his prof, and he stuck the biopsy needle in where he hadn’t put the lidocaine in. So he put it in where the, where it wasn’t numbed. And I think you only do that once, and if you do it with your prof, that’s probably a good education [laughs]. You’re never going to do it wrong again. So I thought, Well, it’s obviously a different circle, practising sticking needles in each other But, so that, you know, they were quite open about how they got their experience, and
So the researcher was, you know, as well as clearly being good at the research side, he did have a reasonable amount of clinical and sort of bedside manner. And then there was a couple of the nurses and assistants there who were obviously quite experienced on that and they were, you know, very reassuring. They knew how all the equipment worked. They knew how to turn the ultrasound on and off, and how to turn the, I think it was the heart rate monitor, switch it and get it to read the right things. So they knew how all the equipment worked and they knew how to keep you warm and just give you a bit of privacy when you needed it. So that was all, that was all fine. And yeah, they, you know, sat with me and, you know, I said I was fine being left on my own for a bit if they wanted to get on with other stuff. But they were quite, they’d come in pretty regularly and check up on me, make sure I was warm enough, get me drinks, stuff like that.

You can stop at any point in any of the studies that they’re doing, but I do have an attitude of if I’m going to do it, it might be a bit, you know, uncomfortable but you may as well see the whole thing right the way through. The last study that I did, after I’d been in this scanning machine, one of the things while I was in there I had to blow, and I think it was blowing out and holding your breath for 30 seconds. That’s a long time – because it’s easy to hold it in, but blowing out is quite hard, but it was so they could stop everything within my body and take photographs of the actual organs, still, within your own body and that’s the most interesting one that I’ve done so far.

Did that one also involve samples?

Yes. Yeah, they took biopsies, and it was a three day study, actually, so what I had to do was on day one I had to just go up to the hospital and saw the study nurse, and they just went through in great detail exactly what would be done. You also, quite often, I think I’ve met, you know, I suppose they’re consultants – well, the people who are doing the actual studies – you meet those up front as well. They all talk to you. they’re never condescending, even though I’m a layman and I don’t really know half the time what they’re talking about, but they make it sound as though you do understand. And they go through it in great detail, again, telling you that you can pull out at any time. And that’s the thing I think that comes across more than anything is you – and they make you feel comfortable that you can pull out, not that, If you pull out you’re letting us down it’s a case of, Thank you for what you’ve done so far, we’re really gratefu, but obviously they’re even more pleased if you go back and finish it off.

It was just, it was very matter of fact. It was, Oh, yes, right OK, no proble.

When I said I wanted to do this. Hm, that was my midwife’s reaction. And certainly when I brought it up before when the, I sorted of prompted and said I’ve signed up for.. I, actually I do remember when I was being induced I said, before the consent forms came round and everything I just said, I have signed up to donating my stem cell and they went, Oh yes, right, yes, I’ve got that in your note. But it, that was it, that was the whole reaction that you got from the professionals. There was no, Oh good for yo or anything like that, there wasn’t anything. No.

Would you have liked
No.

ore?

No.

No?

It didn’t bother me. It wasn’t the main focus. You know, I was too worried about [laughs] about delivering and having a baby that, to actually really worry about that so it wasn’t, no, it wasn’t a big issue.

I mean, maybe if you were doing something that, you know, my primary concern at that time was, was having my baby so that was really my main focus. I did happen to remember that I’d said, you know, I have signed up to this and, you know, this is going to be done, isn’t it And I think I did that because everything was going so badly with my planned birth plan and everything like that that, you know, nothing went according to plan and, you know, being in hospital, delivering early having an emergency caesarean, nothing went according to schedule. So I think, I probably remembered more about it and brought it up as a point because everything else was going so badly [laughs] and I had a bit more control over this. But I think, you know, if it was a donation and other circumstances where birth wasn’t the main focus I probably would have want, maybe wanted a bit more interaction from, from health professionals. Hm, yeah, possibly.