Yeah, you get this envelope and you open it and you start reading, you think, Oh, this going to be interesting. Then you think, Oh, they’re not telling me very much.

Okay.

And I get that, and I wonder what they’re getting, like, I just sort of said, I wonder what they’re getting out of it because they’re not telling us very much.

I would encourage them to, you know, if they’re at all interested in how people live and how society operates, I think, to be part of something that feeds into that is extremely important.

Okay and why do you think it’s important?

Because we need to know how society operates, how it works and we can only do that by studying it; by studying people; studying patterns of behaviour; studying opportunities; choice and so I think if you get the opportunity to participate in something like this, then it would be very worthwhile.

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?

Yeah, I just want to say this is, this is a fantastic thing, you know. I mean, people like me who, I’m a mum and I think that is the best title I love to wear; a mother because I’m bringing up my kids which will be the future generation, right? And I would-, would love to have, I would love them to have a safe and secure and developed place to live. I don’t want them to feel that we are living in a, you know, deprived’ is a very sad word. Deprived is a very harsh word to say, I think. Why we are deprived?’ because we live in England, you know and, and people say deprived area. It hurts me when people say, You’re from [city], it’s a deprived are. You’re from [city], it’s a backward are. It is not. I want everybody to know that it is a beautiful place to live. People and community around me is amazing and there’s some fantastic research going on.

It must have been understandable in some way and I think because there was a, the follow-up was quite soon and I was able to talk to that same doctor again and ask the questions and it was almost as we’re doing here. The interviewer asking, Do you understand this Well, I don’t. Tell me more So that was really important, the follow up with, it wasn’t a long time, so the first follow up might have been two weeks after I’d had the event.

What’s been good is, recently, instead of a Christmas card that they sent us, they’ve actually sent out a sort of a newsletter which has had more information on it, so it’s making you feel more up to date. it’s also got a local Facebook page that I signed up to as well. There’s not many posts on it but, you know, people have been putting up photographs and things like that, yeah.

Do you have any comments about the way it is written, the information given?

Ay, I thought it was, I thought it was good. I could see it was pitched possibly at an older age range which we are now sort of thing, so. But it had details about access to websites and things like that, so that’s really good. So, I certainly read it thoroughly. Although I couldn’t repeat what was in the last one because it was quite a while ago, but I certainly followed up and looked at everything that was discussed on it and so on. So, again, I felt valued that they had sent that out to me.

And I think it’s harking back to how things used to be in a way and that it’s almost quite old fashioned. it’s almost, like a curtesy that it’s just keeping in touch, so that it’s, you know, just letting you know what’s happening. So, it is feedback, but it’s got that kind of old fashioned traditional kind of context to it that we were somehow, that’s how you were brought up, so you let people know every so often or it’s, so, you know
Okay.

o, I think that’s really appreciated probably by others as well as myself.

I think it can be overdone, I really do, I think look at a way of streamlining it because it’s, it can be really irritating. I just think it ought to be, you know, a process where the question is asked once and not the dozen or so times it feels like and I suppose that’s partly to do with respecting people’s time.

And, you know, it clearly needs to be made in such a way that it’s understood. But it’s a little bit along the lines of every single thing you do now like you’re asked to give a feedback and it becomes a sort of manacle in the end [laughter].

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 i. 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.