Cohort Studies

And were there any downsides?

I don’t think so, really. It’s, it wasn’t a difficult form to fill in and I was happy to take the time.

Okay and does it ever feel like a burden when you get that through the post? Do you sort of think, ‘Oh I’ve got to do this again and it’s another thing?’

No, I don’t, I feel, ‘Oh this is interesting. I wonder what questions they’ll be asking this year?’ because they’re often different.

I think I’d say, “Go for it”. I mean it’s a, it’s not a difficult thing to do. It takes about, I suppose, half an hour or a bit longer to fill out the questionnaire and, and you just send it back. I mean, you know, it’s not hugely onerous from the point of view of time or effort, so I’d say go for it.

Yeah well, I had to do it over a certain number of years because to get a comparison of how you’re functioning over a period of time. I suppose two years would not be enough; three years would hardly be very much about it. I suppose five years, you’ve got a broader landscape to see how the actual performance of the kidneys is actually bearing up.

Yeah, well, I can’t see any point not participating because I think it’s, you know, if it’s going to help research or other people, just participate. I can’t see any reason not to, unless you are so busy that you can’t afford the time not to, but being a retired old man [laughs] I don’t, I can’t see any reason not to. You know, it’s, I think I would encourage everyone to participate if they could.

Okay.

It needs, probably needs younger people because from what I saw most of the people were my age that were going in or waiting.

Okay, so…

I should think you ought to try and encourage younger people to participate.

I think it’s just the commitment. You need to give your time, like, you know, I’ve got family, I’ve got kids, I’ve got little ones, I work, I volunteer. Even in my work I volunteer. I do provide massages to elderly people whenever I can. It’s just that you need to commit for the time and sometimes I believe people who are participating into some sort of a research, because it’s a sense of responsibility and it is a commitment, it sometimes it gets overwhelmed if you’re everywhere and if you are, if you’re giving more than sometimes it’s more than what is being required. That is it.

I was two years in, I’m two years into it.

Yes.

Not, it’s not a big commitment because I can adjust the dates of it, you know, they’re far ahead so I can adjust the dates. So we can change them but because I’m now retired it’s easy, I can take time off, it doesn’t matter. But when I worked, I was in a senior position, so I said, “Look, I’m doing this and that’s the end of the story,” and everybody said, “Okay”.

Having done this now, you know, if I was invited back to something similar to insulin then I’d probably be more likely to give it a second, you know, give it some serious thought. I mean, the downside to it is that I don’t think - they did ask me if I’d come back and give some more biopsies, but it’s, the problem is it takes half a day out of my annual leave and having already taken one to do that, and lost a day with all the snow at the beginning of the year I’m running low on annual leave. So it’s, you know, one of the things that would limit it is just how much holiday I have in any particular year or whether, or whether they can tie it into when I’m actually on shutdown. So that’s actually a limiting factor at the moment.

Yes. I was tempted to take it as a sort of medical appointment, which I could say without lying [laughs], but I didn’t. That wasn’t right. One thing my company does support is actually working in the community - and I did fly that past them and say, “Oh, you know, it is a community service”. But they weren’t too keen on that either. I didn’t push the medical side of it. I sort of just said, you know, “I’m doing a bit of research. You know, would that count?”

And you said the researchers came to your house last time...

Yes.

…they did the ten-year review. Is that normal or would you have to go to hospital?

Normally, I’d go, I went to the hospital for the previous ones but because my wife is also on the study would you believe, because she had a minor stroke just over a year ago, 18 months ago I think, but she can’t, it’s so difficult, she’s in the wheelchair, getting to them and so they said, “No, no, we’ll come to you”. And from whether they change their modus operandi, I got a letter saying, ‘You’re due for your ten-year follow-up, could we make an appointment to come and see you?’ I didn’t even have to say come and see me.

Are they presented in a kind of easy to fill in kind of surveys?

Yes except the one, they did some telephone interviews from the, on the Alzheimer’s one and basically they were saying, do you have sort of like they say suicidal thoughts and matter and they just say, your choices are, you know, never, occasionally de de de de [illustrates ticking of a list] and by the time you’ve got to the end of the list I’ve forgotten what the list was. So I said, “Hold on a second, let me just write down that list. Okay now ask your question,” and so it was actually quite difficult to do because I couldn’t, I’m much better with visual things. I couldn’t keep them in my head.

So this was a telephone interview?

Yeah telephone interview that was basically her filling in a multiple-choice question, but I couldn’t see what the answers were. It would have been much better if she had sent me, you know, “Now turn to card four,” you know, what I mean. “Here are your answers, now let me ask the question,” do you know what I mean?

Well we go to see them in the GP’s surgery. It’s definitely down to annual now, I can’t remember how frequent it was before, you’d have to ask them that.

Okay so you don’t, you can’t remember.

It might have been every six months, it might have been every three months, it might have been more frequent, but it didn’t matter, it was all very convenient.

It was convenient for you?

Yes because it was here in the village.

Yeah, and they took my name, they took my name from there, so they send me invitation to come, to come in a meeting.

Yeah and they send, they send cab here to take me to there, take me to a meeting.

And you go every Tuesday?

Not every Tuesday, every, every month. They tend to every two months.

Okay.

So, when they come to take me here and they bring me back, they bring me back.

By taxi, they take you by taxi.

Taxi, yeah.