Delay in getting help for a transient ischaemic attack (TIA)

Getting an early diagnosis and treatment after a TIA is very important, as it reduces the risk of a further TIA or a stroke. There are two main reasons why people may experience a delay in getting treated’ either because they do not realise the significance of the symptoms, or because health professionals do not act quickly enough.

People we talked to often found it difficult to know when or whether to seek medical help during or after the onset of symptoms. In many cases the symptoms only lasted a short while and it could be easy to pass them off as being insignificant. Some of the people we interviewed suggested men were sometimes more likely to dismiss symptoms as trivial and less likely to seek medical attention especially where they seemed fairly short-lived.

Ken had woken on several mornings with blurred eyesight but thought nothing of it to begin with.

Age at interview 68

Gender Male

Age at diagnosis 68

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I was having these, when I got up in the mornings I had a blank, my eyesight wasn’t clear. And that lasted about half an hour. I’ve had nine of these all told and when I went, finally went, I thought, Oh well, we’ll check it out just to be on the safe side.

it’s just always in my eyesight and first thing in the morning, as I say, it lasts about half an hour and then it would go.

And so before you actually went to the doctor, I mean, maybe the first couple of times it happened, what did you think it might be? Did you not really

I didn’t take any notice.

Really?

Just ignored, ignored it, let’s put it that way.

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Roger didnt seek medical help initially as he said he felt Its a man thing.

Age at interview 67

Gender Male

Age at diagnosis 64

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The feeling hadn’t gone away. I mean I did think it was what we call – like a man thing, that okay – first it was just, oh it’s silly, get over this come on. And then the next day it was still there…I don’t like this.

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Often, symptoms such as headaches, general dizziness, or momentary blurred vision could be felt to be something less serious, just one of those things that we all get from time to time, especially in older age.

Ross headache lasted for several days but she put it down to generally feeling unwell and stayed…

Age at interview 69

Gender Female

Age at diagnosis 69

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Just thinking back to when you had the first, the headaches

Yes.

that you’d said you had?

Yes.

What did you do about that? Did you just sort of keep taking painkillers…?

I took paracetamol and I was in bed. Because the, the headache just wouldn’t go, it just wouldn’t go.

So at that point you didn’t seek medical attention?

No. I mean, I just had a headache that went on for three days. And if I didn’t, if I hadn’t needed food I wouldn’t have gone out on that fourth day because I just didn’t feel well.

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Sometimes people didn’t mention their symptoms to their partner or family to avoid worrying them.

Dennis had a short episode where he lost movement in his limbs, but as it passed quickly he didn…

Age at interview 83

Gender Male

Age at diagnosis 82

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I had had a busy Sunday in the garden, and at the end of the afternoon, feeling very self-righteous, I went and poured myself a whisky, and sat down to listen to a very noisy piece of music, quite relaxed, and at one point I wanted to move the CD case, only to find that my arm wouldn’t move. I thought, What’s going on? So I thought the first thing to do would be to turn off the hi-fi, and stood up, or rather tried to stand up, and found that I couldn’t. So I eased myself down onto the floor, crawled across the floor, turned off the radio with my left arm, which was fine, and just lay there for a minute or so, and then all was well.

I stood up, went back, and my wife was in the kitchen at the time, so I thought, Well, I don’t want to trouble her. All’s well again. I feel fine. One of those things.

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Ken cares for his disabled wife and didnt want to worry her.

Age at interview 68

Gender Male

Age at diagnosis 68

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I never said anything to my wife. I’m a very quiet person. I keep things to myself even if I’ve got a problem. I’d, you know, I’d try and getbecause she’s not a well person. So I try and keep things to myself. But this time I thought not knowing was a bit too much to cope and I thought, Well we’ll check it out, perhaps she’ll send me for a sca. And that was it.

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Some people remembered experiencing small or seemingly trivial symptoms before having a TIA, which at the time they had thought nothing of and had not reported their symptoms to anyone. Geoff felt upset that his TIA could not have been predicted, but realised later on that he may have had warning signs that he had ignored.

Geoff remembers a small incident that happened prior to his TIA and thinks now that he should…

Age at interview 68

Gender Male

Age at diagnosis 65

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I used to go out with the, the dog, I mean, the, it was my job to go out, to walk the dog and I was out and I don’t I’d been even, even told Enid this, I was out with the dog one morning and I was over talking to a friend like you meet out with the dog and I did have a, like just like a dip, a small dizziness.

And I think was that a warning sign, now?

How long did that last? Can you remember?

It was just a minute or so. Because I was talking to this friend and we were stood in the what they have for the horses in over there and I had to turn round to the fence and get hold of the fence to make sure I didn’t, you know, fall over.

But it was only a second or so, I feel. So, I often think, was that a warning? And should I have done something then.

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A lot of people we spoke to were unaware of the symptoms of stroke and did not therefore associate their own experiences as being related to that (see ‘Understanding of TIA/minor stroke‘). People were more aware of symptoms such as numbness or paralysis and speech loss, but visual disturbance and feelings of disorientation did not seem so important.

John delayed seeing his GP because his knowledge of strokes was limited.

Age at interview 59

Gender Male

Age at diagnosis 58

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My, my reaction was not immediate. I waited for a couple of hours before I reacted. And that’s about, that’s due to ignorance. I did not know that the symptoms I was experiencing were connected directly to a minor stroke. it’s only subsequently I learnt that. But I knew that there was something very odd, and I suspected that it was a stroke. But there was a big gap, there was a knowledge gap. Now I’m very well aware that anything odd I’m going to, I will dial 999 or get somebody to take me to hospital, because it’s been explained clearly that there’s, that time is of the essence. And whereas we, most of us, I think know that, Sharp pains in chest. [snaps fingers] React no, odd symptoms round brain, no, we’re not, I’m not aware. I was not aware at all of the range of symptoms that one could experience. So that’s been an interesting learning.

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It could also be easy to attribute symptoms to something else entirely, such as medication. Yvonne had been recently prescribed medication for a newly diagnosed heart condition and so thought that her symptoms must be side-effects. Like Yvonne, some people felt that they didn’t want to bother the doctor over something that seemed to pass relatively quickly.

Yvonne didnt seek help because she had started taking new medication for another health problem…

Age at interview 54

Gender Female

Age at diagnosis 54

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I came home and I said to my husband, You know, I, I felt really strange today And told him what had happened. And he said, Are you sure you’re OK And I said, Yeah, I think so, I think it must be the medication

Felt awful the next day. But again went to work. Came back. And I was sitting here in the evening and all of a sudden I got the sensation of pins and needles in my left arm and my left leg. Passed over in a couple of minutes so I thought, Oh, it, it’s definitely the medication and I’m now getting used to it Had a doctor’s appointment on the Monday so I thought I won’t bother the doctor, I’ll just mention it, you know, when I go in on Monday.

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Several people said they felt reluctant to ‘bother’ the GP and so waited to mention their symptoms until they had a routine appointment for another matter. In Yvonne’s case, after mentioning her symptoms to her GP during an appointment for something else, there was a further delay in seeking help as she was referred to a TIA clinic but did not know what it was.

Yvonne was referred to a TIA clinic but did not know what TIA meant and so delayed her…

Age at interview 54

Gender Female

Age at diagnosis 54

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Had a doctor’s appointment on the Monday so I thought I won’t bother the doctor, I’ll just mention it, you know, when I go in on Monday.

Mentioned it to her eventually [laughs] and she said, Ohh, I think I need to refer you to the TIA clinic I said, Yeah, OK fine Not knowing what TIA clinic meant and kind of not asking really. And I came home. It was about half past seven in the evening as it was a late appointment. Came home. Phone rings at nine o’clock the next morning to say, Can you come in tomorrow I got, Sorry? What’s, you know, what’s the rush And eventually I said, No, I’m on annual leave at the moment my first day back at work tomorrow, so can I come in on Thursday And they said, Oh, OK

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Two people talked about experiencing symptoms whilst travelling by plane returning from abroad. Both of these people felt that they just wanted to get home and decided that they would rather make an appointment to see the doctor later. In Ken’s case, this was partly because he thought that if the air cabin crew knew that he was feeling unwell they would stop him from continuing his journey home.

Ken didnt want to be taken to hospital in another country so kept quiet about his symptoms.

Age at interview 78

Gender Male

Age at diagnosis 74

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The circumstances were that I was returning from a holiday in Crete. And it had been a horrendous day because we’d had tropical sands, rainstorms and I’d driven over 100 miles from where I was staying to the airport. And well, I was feeling rather sort of lethargic and whatnot during, before boarding the aircraft. When I boarded the aircraft I started to stow my luggage in the top. I found that after sitting down that I was having difficulty in raising my right hand, right arm. It wouldn’t come up any more higher than this. And also feeling numbness in the leg. And I suddenly realised that I was, I was probably suffering a mild stroke, this was sitting in the aircraft ready for takeoff. So being of the opinion I wasn’t going to stay in Crete with this happening, I
I went to I stayed, and virtually slept all the way back, until we got back to Gatwick airport. And then having sort of, still feeling the effects of this because my speech was slurred. And but I did have movement in my arm and leg. And so having sort of struggled off there, collected luggage, I managed to make it to the public transport, bus from Gatwick that comes to [town]. I managed to successfully negotiate that. And it must be realised that this was the early hours of the morning, i.e. about one o’clock in the morning. I got on the bus, got back to [town name] and I’d previously arranged my son-law to pick me up in [town name] to take me home. And he was quite surprised actually when I phoned him up as he said when I met him in [town name] and hed come in his car, that in actual fact he wondered when I said to him that I suspected I’d had a minor stroke. And he said, well, yeah, what, he actually wondered because he was the conversation he’d had, which I’d had with him over the mobile phone was such that he thought I was drunk there. So, anyway, I sorted that out. So he drove me home. And I said to him, don’t tell [daughter], that’s my, that’s his wife, my daughter. And of course, he did but there we are, I’d be surprised otherwise. So I got home, explained to the wife what had, more or less what had happened. Said I’d go and see the doctor in the morning.

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Often it was a partner or carer who expressed concern and initiated a call to the GP or emergency services, but it could be difficult sometimes for other people to make the decision as to what to do.

Gillians carer waited until the evening to call the GP.

Age at interview 92

Gender Female

Age at diagnosis 90

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I had been clearing up things in the lounge. We’d had, a priest was in that morning to celebrate Mass and things afterwards, things had to be put away. When I was putting things away, the telephone rang and I found I couldn’t get quick, I couldn’t get to it to answer it. And later on that day it does seem that I was sort of, something was slightly wrong, I didn’t really know what, but I wasn’t able to move around as I usually do. I had a carer here and she was concerned but we waited until the evening and then she called the doctor in. And she didn’t know what had happened. And the next day the doctor came again and maybe said I had had a slight stroke and he made an appointment for me to go to the hospital, which I did a week or two later.

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Sometimes people did seek help but for one reason or another did not get seen as quickly as they might have been. This could be because their symptoms occurred out of GP surgery hours, or they may have phoned their surgery for an appointment but were given a routine appointment (not immediate) rather than an urgent appointment. Roger felt that the receptionist at his GP practice should have responded more appropriately to his request for an appointment with his doctor, and eventually he rang NHS direct for advice, and was told to go straight to A&E to be seen urgently. Similarly Mike’s episode (below) occurred in the evening when the surgery was closed, and when he saw a locum doctor from the ‘on call’ service he was told to go and see his GP in the morning rather than being given immediate treatment. With hindsight he feels more urgency might have helped.

Roger felt that the receptionist at the GP surgery should have offered him an urgent appointment.

Age at interview 67

Gender Male

Age at diagnosis 64

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Unfortunately because it was Thursday at one o’clock GP’s close and of course [inaudible] [laugh]. And there was a feeling that a stroke – the GP receptionists and other people should be trained to recognise the sort of signs, which they don’t, patently not at the moment.

Did you feel that the GP’s receptionist wasn’tesponding?

No, I didn’t think they knew and cared particularly. And I did say to him later, I’ve said to my GP several times about this and he raises his eyes and says it’s very bad. And he’s not the leader of the actual clinic, but he obviously feels that it is bad. They should be trained obviously to recognise whatever the signs as much as possible and not to put people off. It seems like this one did. It wasn’t done deliberately, but you get a feeling that you’re being a complete nuisance and you have to pester people and you know, it’s

How does that make you feel?

Well it makes you feel unwanted and unloved I suppose is the main thing.

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Mike saw a locum doctor in the evening who told him to go home and have a large whisky and see…

Age at interview 63

Gender Male

Age at diagnosis 53

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I was just wondering, when, when you saw the GP the first time and he sent you off, he didn’t mention taking aspirin at all or giving you any?

Mike’ No, no.

…thing like that?

Mike’ All he was worried about was to get me out of, out of the room and some,

Debbie’ And he was the one that told you to go home and have a large whiskey.

Mike’ Yeah.

And it, I mean, it sounds like at that didn’t sound very satisfactory. How did it make you feel when that happened?

Debbie’ I, well I felt he knew what he was doing. In hindsight I should have taken him straight to A&E. But

Mike’ Yes, it was

Debbie’ You know.

Mike’ ..should, should never have gone to see him at all.

Debbie’ No.

And what do you think might have happened differently if you had of acted differently?

Mike’ Well I would have been in the care of the hospital immediately rather than on, on my own not knowing what was going on. We did not know what was going on. And I could have had a much worse stroke. But without any medical care around at all. So it would, it would have been more sensible to, if we’d known, if we’d thought about it, or known to go straight to the hospital and be sorted out there and then.

Did you know anything about strokes before all this happened?

Mike’ No I didn’t.

Debbie’ No, I mean, as I say, I went through, Did he have chest pains? Did he have a pain in his arm? Did he have a splitting headache?’ because I knew that might be a sign of a heart attack. But no, no we didn’t So

Can you remember how you were both feeling during that evening when things were a bit up in the air and you didn’t know quite what had happened?

Debbie’ I was very worried. But I took, you know, I suppose as you do, you think if you’ve been to see an expert’, in inverted commas, you take their advice and we went home and I rang the GP first thing the next morning to get an appointment. And they’d asked us to come straight in. So, as I say, they obviously knew

So you felt like you were in good hands?

Mike’ But by then

Debbie’ Yes.

Mike.. by then, yes.

Debbie’ Yes, but

Mike’ Yes.

Debbie.. I could tell that our GP was not happy when we got there. And I did say, and I did mention it to the consultant as well. Now, what happened after that I don’t know. We didn’t take it further. In some ways I regret now we didn’t. But [uh] I would imagine that he was fairly quickly removed from the locum list.

Mike’ Yes.

You felt like, it sounds like you felt quite let down.

Debbie’ Very let down.

Mike’ Yes, yes, yes.

Debbie’ Yeah.

But presumably that’s not an experience you’d had prior to that..?

Mike: No, no

Debbie: No, and our GP was brilliant. But it was in the days when they’d just recently gone onto this new everybody signs up to a locum service in the evening and so many locum GPs cover so many practices and

So do you, I mean, do you feel if you’d have, if it had been your normal GP, your regular GP that ?

Debbie: Oh, we would have been in hospital.

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Some GPs did not immediately recognise symptoms, and put it down to some other cause such as anxiety or an infection.

Michelle had a number of small TIAs prior to having a major stroke but doctors said it was anxiety.

Age at interview 28

Gender Female

Age at diagnosis 26

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Because we live too far away to the hospital, they couldn’t actually get an ambulance up the mountain where we live, so I had to get or my mum did, sorry, the next, next door neighbour from where we live to take us to the hospital. And it was a weekend because it was an out of hours and we got there [sighs] and he did examination, blood pressure and he checked my ears and he said I had viral infection. And just to go to see my normal GP in the week, the next week. So we did. And, and from there I was having, I don’t really, funny sensations. The doctor thought it was neuralgia, anxiety…

What sort of funny sensations?

It was more in my face like, not like pins and needles, it’s not like that or, like something running on your skin. Kind of like that. But it would go numb and then come back and, but it was, it was more on my face than anywhere else on my body. And a lot of the doctors thought it was a severe anxiety problem and they was giving me medication to treat anxiety which in one way prolonged the stroke but didn’t really investigate TIA, the possibility of TIA at all, the lead up to a stroke.

When was that first mentioned then? TIA?

TIA was after I’d had the big stroke.

Oh really?

Which was five months later.

Ok, so you hadn’t realised that you’d had a mini-stroke?

No, nobody said it was a TIA or anything until I had the big stroke and they’d seen in my notes what had happened five months previous and said, Oh, that was a TIA, somebody should have, you know, picked up on it So that’s when we first got told it was, these were mini ones leading up to the big one.

So you went for five months just feeling intermittently

Yeah, having constant like mini TIAs. Some could last minutes, some could last days, hours.

Were the symptoms, once the symptoms had died down then you were fine for a bit, were you

R’ Then I was OK, yeah. But I knew something was wrong because they was going to come back. But it was hard trying to get the doctor to listen that it wasn’t anxiety problems, it was something different going on.

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One woman was taken straight to A&E by her colleague after collapsing at work where an emergency doctor said he thought she’d had a TIA and advised her to see her GP as soon as possible. However, although she followed the advice, her GP subsequently referred her to a general triage clinic that dealt with unexplained symptoms rather than to a TIA clinic. Eventually it was felt that she needed to see a neurologist, and she is now still waiting for an appointment several months later.

Despite seeing an emergency doctor and GP who both suspected she had a TIA Gilly was not given a…

Age at interview 51

Gender Female

Age at diagnosis 51

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I went to my GP the next day on, with not very much breakfast [laughs] and it was just odd. My GP said, Well, yes we think it’s a TIA. You’re going to be referred to this place and, andrdquo; She was very supportive, really brilliant, fantastic. And said, Well we’ll just have to wait for the diagnosis no and talked about what it will mean and that I should rest which I was really glad about. And I thought, I think I presumed that because I’d spent half a day in hospital that everything would then unfold pretty quickly and it didn’t.

I saw no specialist on stroke. Were this ever to happen again I probably wouldn’t leave the hospital, I would probably insist on staying. And I would probably just be a stroppy patient and wait in A&E.

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Sometimes people were referred quickly but still did not quite register how important it was to be seen quickly.

The GP wanted to see Angus immediately but he put off going until the next day as he was busy…

Age at interview 61

Gender Male

Age at diagnosis 60

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I mean, it was really silly, but the doctor actually from the hospital rung me on my mobile and said, Come in, we need you in here no and I said, I can’t, because I’m just finishing off some wor and he wasn’t too pleased, sort of thing, and I went to see him the next day. And that’s when he said to me, How did you get up here I said, Well, I drov and he said, Well, you won’t be driving bac you know. Yes, and he stopped me from driving then.

it’s interesting he didn’t say that to you on the phone?

Yes, I did say this to him and he said he admitted he was a bit taken aback that I didn’t go and see him straight away when he said the first time, [laughs] you know, but I just didn’t associate the second. If he’d have said this after the first one I’d have gone straight away because I associated losing my speech with a mini stroke, with TIA, but no one says about, no one said about eyesight and different things, you know, and hearing, things like this. So I didn’t associate it with it and thought, Oh, it’s just nothing even though the doctor had already told me, Yes, it’s a second on, I still weren’t, I weren’t convinced totally with the second one, you know.

Yeah, it hadn’t quite sunk in?

Not really, no. That’s what it was yes. But I soon, he soon convinced me otherwise [laughs].

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