My first reaction was I’d had a stroke. The word TIA I’d never even heard of before, and mini stroke, I just thought strokes – a stroke’s a stroke, you know. Because I’d lost my voice I thought this is the start of the – like the advert, that FAST advert, you know, part of that is the speech. But it come back, that was the thing. It come back very quickly, and it’s been explained to me it’s just like a little blood clot going to that part of the brain, then it passes through. But while it’s there you lose that, whatever part of your speech or your sight, whatever it is, for the time it’s there, you know. For some people it stays there and that’s it, they’re disabled.

And when did you first hear that term, TIA? Was it the first time you went to the doctor he said that?

Yes, yes.

And how did he explain it, or how would you explain sort of what TIA is?

He explained it to me as a mini stroke, a very mini stroke, he said, and lots of people have them and don’t realise they’re having them [phone beeps], or ignore them, which is the worst thing you can do, because it leads to another one. And if you ignore them all, eventually you will have a major stroke.

Enid’ They told, well they told me, because I asked the nurse in the evening and they said it’s what they call a TIA.

TIA.

Geoff’ TIA.

Enid’ TI, TIA

Geoff’ TIA. Transient
Enid’ TIA.

Geoff’ Yeah.

And did you already know those, that term or was it new to you?

Enid’ No, it was new.

Right.

Geoff’ No, I didn’t know the TIA, I just thought a stroke was a stroke and
Enid’ Hm. Yeah.

And so was it, it, did they explain to you what the difference was? What it, what it was that you had had? It, you know, as opposed to a stroke?

Geoff’ They haven’t explained the difference.

No, no I didn’t. I didn’t realise the difference betweenI wasn’t aware of different reactions that they could give. I understand a TIA is a short circuit in the brain. And I think it’s a more, a heavier stroke or whatever that is more of a devastating thing.

And actually did you know about TIA as a different thing from stroke?

No, I didn’t. No, I didn’t.

So did she explain that to you in the surgery or?

No.

Who told you about TIA?

[laughs] It was the doctor who came to see me who explained the difference between a stroke and a TIA.

In the hospital?

Yes, yes.

Right, right. So you’d never come across that term before?

No. I mean, all I’d heard about was the dreaded word stroke.

I had heard of a TIA, because my Mum had had lots of little, lots of TIAs. Some she got over and some she didn’t. He explained to me, that because of the name being transischemic [transient ischaemic] that it was there, then it disappears. I knew what a stroke was.

I’ve always called it TIA.

Right.

Which as I understand it is the, it’s temporary, it’s passing.

it’s a matter of minutes or hours maybe but not, not long, it’s not a permanent thing. And thank God for that.

Was it called a stroke or a mini-stroke or TIA? How was it

It was a TIA. But the thing is that I was left with brain damage so that was where it was sort of like, because I did recover very well
But I was left with a small patch of brain damage to which I was extremely, I took very, very badly. You know.

And what’s the outcome of that then in terms of the future for, is that something that’s going to improve or that’s permanent?

I feel that, I mean, it’s permanent damage because it’s brain damage but I feel that other parts of my brain have compensated because how I was then to how I am nowI said to friends on the weekend that I was doing this interview with yourself and the fact that, you know, I felt that I, the way I was before I had come back if you like.

And do you remember how, what, what the doctors or whoever it was that gave you the diagnosis, I mean, how did they distinguish between a TIA and a full blown stroke?

Because they, because it had happened within a certain amount of time.

And because it had happened within 24, I’d recovered within 24 hours they put it down to a transient ischaemic attack.

And they explained what I’d had was a transient ischaemic attack, a sort of mini stroke, when a blood clot breaks away from some part of one of your veins and travels into your – it must be an artery – it breaks away from one of your arteries and travels into your brain and causes a blockage. This causes some damage to the brain cells, but the blockage gets re-dissolved and then everything recovered. And in my case the recovery was essentially complete.

think the nurses did sort of say did give some information but even to this day, I mean, I know, I know what a, a mini-stroke is obviously now [laughs] but even to this day I haven’t got, I wasn’t given that much information. I don’t think anybody actually sat down and said, This is what happens and these are is, these are the results and this is what is likely to happen and this is how you are likely to end up In fact, when I came out of hospital, or am I jumping the gun
No.

Too much. When I came out of hospital [wife] and I sat here and we just didn’t know what to do. We were completely lost and alone. Absolutely on our own.

So, I mean, one of the questions I have here is, you know, were you happy with the way you were told? I mean, it doesn’t sound to me

No, not really. I like, when, when something’s the matter with me I want every nut and bold explained. I want to be told what, why, when, how and I, it wasn’t. It wasn’t until I actually went on the computer some days later and looked for strokes and found the Stroke Club, website and sent off a message that literally said, Please help me. I don’t know what to do. I’ve had a TIA, I think Can you help me And they were brilliant. Once I had made contact with them I thought that everything was great. They sent a volunteer out who came and spoke to me.

If something happens to our brains or even if we’re just upset and end up in A&E surely we’re not going to process communication clearly so possibly things need to be said very simply and possibly in writing or on a card as well. And I think, I just think that would have been really helpful, for me to have something in my hands to take away. I know people who’ve had TIAs who’ve been given numbers of Stroke Association or Different Strokes or something like that and nothing, nothing, nothing, absolutely nothing, not even a leaflet saying we think you may have had a TIA, please come back if you have a headache. Nothing.

They gave me a stroke folder
Right.

which was kind of full of, you know, what to do and how, when to seek medical help and things like that. Which I’ve read cover to cover more than once.

And do you find it useful?

It is useful, yes.

What about information about the actual condition, TIA? Do you feel you’ve been given enough to understand what happened to you?

No, I think is the answer to that. Not really. I just take life as it comes, I’m afraid. [laughs]

I mean some people are happy not to have more information. Does that apply to you, or would you have liked more?

No, I don’t think so.

No. So you, you’re happy just to…?

Soldier on, yes.

Know the limited sort of amount that they’ve given you and that’s enough?

Yes.

Do you feel you’ve got enough to help you decide whether you need to get help quickly in the future – to be able to tell if it’s the same thing happening?

[mm] Yes, I think common sense would, would tell me that.

We’re both lucky to be research scientists, my wife and I, so that we’re able to access all of the professional research literature. This is done through my old college, which is in the States, and so I can just get on to the library system and I can read all the Lancet articles and look at all the research and journal publications. And this is a great help in finding out what’s happening. And it’s a bit scary in finding out what’s happening.

There’s a problem, there’s a real issue here about education. Because what happened to me was that, yeah – and, you know, maybe it’s arrogant of me to say this – but my wife and I, you know, we’re researchers, we’re incredibly curious, we want to know. We’re never happy to have things just happen. And that being the case, we really looked into this.

And we had to work very hard. it’s very hard to find this kind of stuff. And I don’t know how you’d find out.

I’ve started to look into it on the computer but it was, it was going into too much depth and thing, things like that and then I thought, No, no get your mind off, off it. it’s happened, it’s happened Sort, sort of thing.

Right, so not to dwell on it too much?

Yeah.

So, I mean, do you think it can be quite difficult to find the kind of the right kind of information…

Yes.

…on the internet?

Very, very difficult.

Now you come to say it, one of the thing, one of the things I remember being, I forget who told me now, one of the things I remember was [hammering] someone saying that TIAs a warning. If you recover from that, you’ll be OK. But you could have another stroke. I remember that particular point.

And yeah, TIA, yeah. it’s a warning.

One of the scary things, I was in this ward and at least three of the other patients were, so far as I could work out, had had the same transient ischaemic attack and were effectively having the same surgery. And yet what was frightening was that none of them seemed to know this. They were just, I think the answer – I think they were just sort of denying anything had gone wrong. Yes, they were going to have surgery. Yes, they’d had this problem watching television and they couldn’t see the television. And this had happened three or four times, and this needed some surgery. And so they were going to have some surgery. And that was probably the knowledge base of the most informed of the three people who were having, as far as I can gather, an endarterectomy.

I think they will have to get out of the way of thinking, Well, he was 84 you know, You must expect these sorts of things I don’t think you should treat it that way. You should wonder exactly what caused it. I don’t know what caused it. But I don’t think it was my age.

They didn’t explain why it was happening. And for me that made it much worse because if they had explained to me I could have understood.

Did it feel difficult to ask questions? Would it have felt difficult, do you think?

It did, yeah. Because they’re much, much used for it for older people so they just kind of do, did what they would normally do,, for me, for them, which wasn’t acceptable.

Do you think that they were inexperienced in dealing with a younger person that had a stroke?

For younger people, yeah.

Right. And so in the ward that you were in, were you, were there anybody else your age or was it mostly older people? Do you remember?

I would say the youngest person there was about 70.

I think because we are a lot younger doesn’t necessarily mean we don’t want to know what’s going on. Instead of going to parents or partners they need to focus more on the, on the patient and tell them what’s going on rather than everybody else because if we don’t’ understand that makes it so much worse for us.

I feel extraordinarily fortunate that I live where I do, close to a major research group, who’ve been tremendous. They’ve communicated throughout this whole experience from day one what had happened, why it had happened, what was likely to happen, and what they were going to do about it. I was asked, Would I like to take part in a research programme Very happy to do that. And throughout that research programme it’s been them that have told me what was required, explained it, made it happen, facilitated everything. So all I’ve had to do is go along with what they’ve – and that’s been nothing difficult, nothing disturbing, nothing unpleasant at all. And you actually feel you’re doing some good. What’s really reassuring is to know that you’re in the hands of people who not only care about you as a human, but they’re caring about this particular ailment. So that they are at the – as far as I can make out – they are right at the front end of probing what is, what’s happening, what the causes are and how to mitigate. it’s fabulous, delighted to have, that this happened here. What it would be like to be, to have a TIA in a country which doesn’t have our service, I don’t know. Or perhaps to, to have a TIA in the UK but to be a long way from a major hospital. I don’t know. I’m just very glad that it happened where it happened.

I think with everything like that, the more you know the better. But then there are people that don’t want to know, because they’re scared of what can happen. But as far as I’m concerned, I like to know what’s going on, for myself and for family.

And how have you found the members of the research team that you’ve seen?

They’ve been great. You know, it’s like a friendly atmosphere. You don’t feel as if you’re in a clinical environment. They make it so friendly, chatting away, not only about the research and everything, but on a personal level as well, that you know, every day-to-day things that go on. So that they make you feel at ease, you know, not as if you’re in a clinical environment at all.

Husband’ They talk with you rather than to you.

Yes, I would say that when you’re talking with them , they’re talking with you, not to you, not you know, sometimes you can feel that someone is sort of towering above you and you’re the little one down on the floor, but this is not. it’s just as if you’re sat in normal conversation.

I sort of feel I’ve been so well treated, but perhaps the sort of ignorance about TIAs should be, [pause] – well, people should know more about what it stands for, what it is, what may happen. And I imagine different people’s experiences can be totally different, can they? So there’s such a wide spectrum of feelings and it must be quite a difficult thing to tackle. But certainly I feel there’s been tremendous support all along the line, and that if there are any mistakes it’s because I haven’t – I mean mistakes about communications – it’s because as a patient I haven’t asked the questions, not feeling that I needed to. So perhaps it’s, the ball may be in the patient’s court, but a little prodding in the right direction [laughter] might be good.

I was brought up that, and when I trained, consultants were gods, and you didn’t question a consultant. And even though I was good at questioning consultants on my husband’s behalf I wasn’t very good at it myself.