Alan Y

Age at interview: 68

Brief Outline:

Alan Y’s participation in a medical cohort study came about when he spent time in hospital with a suspected transient ischemic attack (TIA). His two main motivations to take part were to understand why someone like him with an active and healthy lifestyle was affected with a health condition and, secondly, because he wants to help other people.

Background:

Alan Y is married and has two grown-up children as well as grandchildren. He is retired but keeps active doing Duke of Edinburgh expeditions and as a volunteer minister in his local church. His ethnic background is White English.

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Alan Y’s participation in a medical cohort study came about when he spent time in hospital with a suspected transient ischemic attack (TIA). His main motivations to take part in the medical cohort were to understand why he was ill and to help others: “I thought if I can help other people and find out why I had the TIA because I was fit, I don’t really drink a lot. I don’t smoke. I’m very active and why was I, all of a sudden, on this bed hooked up to all the wires?”

Alan Y’s father had high blood pressure and high cholesterol, but Alan Y and his siblings were unaware of it. Alan Y, in turn, made his daughters aware about these medical conditions running in the family and both have recorded them in their medical records. Alan Y says, “awareness is the biggest thing”.

Over the last ten years, and as part of his participation in the medical cohort, Alan Y has had regular reviews. Initially “there was lots of tests at the time and there was a one month follow up, I think, and then regular, it was probably one month, three months, six months, during the first year, with repetition of the same tests”. Tests have included blood tests, electrocardiograms, monitoring of new medications, memory, writing, and copying pictures tests “to test my brain function to make sure it was still there”.

He feels reassured that the medical cohort has his medical records and the team gave Alan Y a telephone number in case he needs to contact them. Last year, he needed their medical advice following eye surgery to remove a cataract. His vision did not recover as expected and doctors suspected a TIA in the back of the eye. The medical cohort team saw him, conducted tests, and were able to eliminate the TIA as a possible cause.

Alan Y feels well supported by the medical cohort team because “there is someone there at the end of the phone and the GP knows that as well and can refer me straight there if she thinks I need to go”. Moreover, he is also aware of the risk of people becoming over-reliant on the yearly check-ups provided by the medical cohort and developing a passive attitude like, “I’m taking the tablets. They’re seeing me next year. I don’t have to do anything else”.

He says that the information received from the cohort study has been fine, but he found that the most important thing was the opportunity to meet a health professional and to be able to ask questions, receive answers and “being able to actually talk to someone, rather than read it”.

Before experiencing a suspected TIA and his participation in the medical cohort, Alan Y had a healthy lifestyle, but said that through participation in the cohort, he has become more aware of the life, exercise and recreation balance: “So, it’s being able to say, ‘No’ and just slow down and enjoy the grandchildren”.

Interview conducted in 2019.

Alan Y was approached about taking part in a cohort study whilst recovering from a transient ischaemic attack (TIA) in hospital.

The long term study, okay, so I ended up in hospital in [hospital], after something happened, an event happened and I ended up, I was in a bed hooked up to lots of tubes and wires and monitor things and doctor came around, the doctor who was looking after me and asked me, “If I would be interested in being part of the long term study?” and I said, ‘Long term?” and I asked the question, “A long term study of what? And she said, at that time, “We think it’s a TIA.” “What’s a TIA?” So I asked, asked all the questions and I said, “Yes,” to being part of the study because I thought if I can help other people and find out why I had the TIA because I was fit, I’d, I don’t really drink a lot. I don’t smoke. I’m very active and why was I, all of a sudden, on this bed hooked up to all the wires? So, she asked me, it was probably the first day I was in, towards the end of that first day in hospital after the event.

Alan Y doesn’t remember a lot about the information he initially received but recalls that it was helpful to discuss with a member of the research team in person soon afterwards.

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.

When Alan Y had new symptoms that he wondered might be related to a transient ischaemic attack (TIA), it was reassuring to know he could talk to the research team who had access to his medical files and could advise him.

It was, I’ve had regular check-ups with them, so and regular contact with them over the years. But it was last year, I had a cataract removed off of this eye and I didn’t get back the vision that they thought I would get back, so further investigation. ‘Was it a TIA in the back of the eye or was it something else?’ And they were able to eliminate the TIA part of it, so it was something to do with the optic nerve. So that was really interesting to be part, still be part of that.

And how do you feel the fact that you have a number, a contact that if you, kind of that you can call?

Oh, I think it’s reassuring and it’s reassuring because I know they can get on the computer or open the draw and my file is there and they can go, “Oh yes, yes, you had that”.

Okay.

And they will call me back in as they did with this eye thing. “Come in, have the test”.

Okay and they provide advice over the phone?

Yeah, yeah, advice and the advice is normally, “Come in and we’ll see you”. So, it’s always, it’s always there. I know I can go in. It will get seen. They’ll do all the tests. They looked at my eye and did a scan and, and found there wasn’t a TIA there. It was something else.

Alan Y contacted the research team because he has a history of transient ischaemic attack (TIA) and was worried about his eye. The extra tests were reassuring for him, and he thinks the results will be useful to the study too.

And how do you feel the fact that you have a number, a contact that if you, kind of that you can call?

Oh, I think it’s reassuring and it’s reassuring because I know they can get on the computer or open the draw and my file is there and they can go, “Oh yes, yes, you had that”.

Okay.

And they will call me back in as they did with this eye thing. “Come in, have the test”.

Okay and they provide advice over the phone?

Yeah, yeah, advice and the advice is normally, “Come in and we’ll see you”. So, it’s always, it’s always there. I know I can go in. It will get seen. They’ll do all the tests. They looked at my eye and did a scan and-, and found there wasn’t a TIA there. It was something else.

Okay, so it’s more than just getting information or advice over the phone.

You can go in and they will do all the tests that are needed and then it eliminates because I’ve had one TIA, is it another? No, it wasn’t a TIA, so it eliminates that which allowed the optic or the eye hospital to eliminate something from.

And how did you feel having that support?

Yeah, it’s really good. Yeah, it’s again, it’s that reassurance. I know I can go in and get that good advice and they would do all the tests because I assume it’s good for them as well because it’s all part of their research.

Alan Y has had regular contact with the study team over the ten year study.

And to know that I have someone there that if this happens again, knows about me. So, I’m part of that study and they have all my records there and the thing the doctor at the time, she said, “If ever you need us, the number is there as well, so just phone straight back in. We have all your records and it means you’re not telling a doctor all the same things over and over again”.

Even last year when I had the eye problem, the doctor I saw, was the one who had initially seen me, say. “Oh, we’ve met before. I see in the notes,” and we were able to go over everything in the, in the nine years. Now, I’ve done ten years, that is really the end of the study because it was a ten year, but I still have the number and I can phone up at any time.