A-Z

TIA and Minor Stroke

Communication with health professionals

Many of the people we interviewed felt comfortable and satisfied with the way in which the health professionals they came into contact with had treated them. There were a number of routes that people took in seeking care (see ‘Seeking help – routes to care’ and ‘Delay in seeking help’) including dialling 999, calling NHS direct, visiting the GP, attending A&E. On-going care came through referral to specialist services such as a TIA clinic or a neurology department. Some people had been enrolled in a research study so had also come into contact with a clinical research team (see ‘Taking part in TIA research’).
 
Whilst it could be difficult to know when or whether to seek help (see ‘Delay in seeking help) those people who called 999 for an ambulance said that they felt they were in good hands. Because of the seemingly ‘trivial’ nature of some of the presenting symptoms it could be easy to worry about wasting paramedics’ time, but as Rosemary points out (below), they would rather come out and see someone who is concerned about worrying symptoms because rapid treatment is the most effective way to prevent anything more serious happening. Yvonne admitted that it could be difficult to bring yourself to complain about symptoms when you were not sure how serious they were but she realised from her experience as a policewoman that it was important not to disregard apparently minor complaints.
 

Keith felt he was in safe hands once the paramedics arrived and says he couldn’t fault the care...

Keith felt he was in safe hands once the paramedics arrived and says he couldn’t fault the care...

Age at interview: 58
Sex: Male
Age at diagnosis: 58
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And then the ambulance came and two paramedics came in who were absolutely wonderful. Walked in and, and took control and, I actually walked to the ambulance which was at the front of the house, speaking to the, to the paramedics as I went. Lay down in the ambulance and talked to them all the way through. And then went into the hospital…
 
I really can’t see how it could have been better. I just cannot see, I mean, as I say, the, right from the ambulance being called in the first ten minutes to and that was courteous and friendly and very efficient help to get me onto the, the ambulance and into hospital.
 
Similarly in the hospital I, I can’t recollect being kept waiting about unavoidably and every step of the way was clearly explained. Every test was clearly explained and the reasons for it. Not necessarily the results because the results might take, if it was a blood test it would take a while to analyse, but the reasons for it. And then being kept in hospital for three or four days, again everything was clearly explained and the, the barrage of tests I had was so comprehensive that. Yes, I wouldn’t have the knowledge to, to know …
 
These are like, you were taken,…
 
…if it could be improved.
 
… being taken seriously…
 
Oh yes, yeah and, and, yes it was, it was being taken seriously and that, and I could see from the way other people were being treated that just the same was happening there. I you know, they give you an evaluation sheet to fill in don’t they when you, you leave hospital and I couldn’t be more complimentary really. I was very impressed.

 

 

Rosemary phoned 999 for an ambulance when her husband (a former ambulance man) was taken ill - ...

Rosemary phoned 999 for an ambulance when her husband (a former ambulance man) was taken ill - ...

Age at interview: 73
Sex: Female
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Rosemary' And I would say that in my experience I’ve found that the paramedics were very good, treatment in the hospital was A1, and I couldn’t fault anything that’s gone on at all. Everyone had been most helpful.
 
Was it frightening at the time it was happening, or did you feel fairly calm?
 
Rosemary' No, I wasn’t frightened. I was quite calm over it, which surprises me because I always thought I would panic over anything like that. But no, I remained quite calm, and I think probably this comes about more because we’ve been involved with medical procedures because my husband was in the ambulance service for many years. And probably we, I wouldn’t panic knowing some of the things that go on, but to someone who is not familiar with medical procedures they might panic over it. But my advice is try not to panic, be calm, and it’s a lot easier.
 
That’s interesting. I suppose, yeah, the fact that you had that sort of family history of the ambulance service might mean that you trust the ambulance service more, you know, when you, when you think, “Where do I get help?” they maybe your first port of call, when perhaps they might not be for other people. I don’t know?
 
Rosemary' I don’t know. I’ve always thought, yes, you know, if it was something that I thought was urgent yes, but with past history it’s been that the hospital and our GP have said, “Don’t hesitate, just get onto the nines.”
 
Yeah, it’s a difficult balance, isn’t it, because sometimes you hear people saying there is sort of inappropriate use of ambulances, and then other times people saying, “Oh, no, you should call 999 straight away”. I think people are often left feeling a bit unsure whether something is appropriate or not or?
 
Brian' As a little input there, I think you would probably find that the ambulance service, i.e. paramedics, would prefer to come out on a call where eventually they were not required, than not be called and something serious happen, which could have been prevented.
 
Rosemary' Yes, you do hear of people calling an ambulance when it’s inappropriate, but I would think most people would realise whether it’s something that they ought to call for or something that’s it’s not really necessary. You know with an accident that you need to call them, but with things happening in the home, normal medical things, then, you know, perhaps someone just getting a bad headache, you don’t need to call an ambulance unless it goes on for several hours. That, that’s my advice is that you should know whether it looks like something serious or something that will go away.

 

 

David remembers how difficult it was to communicate with the paramedics at first, but gradually...

David remembers how difficult it was to communicate with the paramedics at first, but gradually...

Age at interview: 67
Sex: Male
Age at diagnosis: 67
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Anyway the next thing that I know is rather noisy paramedic enters the sitting room, and at a volume that seemed 20 times too much asked me what was the matter and I told her. Well I told her, [wife] told her what was the matter. And I tried to tell her what was the matter. And she came to me and said, “Don’t worry, we’ll look after you”, and put an oxygen mask on. Now I have a strange phobia about things over my face because as a child, I was blowing up a balloon and the balloon burst and went onto my face and I couldn’t get it off. So I was sent, ever since then I don’t particularly like balloons that much, nor do I like anything put on my face. But she insisted, rightly so it transpires to put this oxygen mask on my face. And I kept asking her or at least I thought I was asking her to take it off, but of course it was absolute gibberish. She carried on doing various things I suppose, taking my blood pressure and pulse and everything else. And then she put an ECG machine on and started that off. And I suddenly managed to say, “Please”’, because that is one of my favourite words and, “Please could you take this off my face?” I couldn’t get the could you take it off for anything else out but I got the please out. And I quite distinctly remember her turning to [wife] and said, “Oh it’s all right he’s coming back.” And I tried to say, “Oh yeah, you know, it takes more than that to keep me away”. But I just couldn’t again.
 
Two more ambulance men arrive. And they carry on doing their various things. And then, as far as I remember, I start to talk reasonably well. It was very difficult to find the words. It was a bit like having a drawer with all the words you use in alphabetical order or, or in some sort of order that you, you know where they are and you can just use them but some clot had been into this drawer and used all the, my words and put them back in the wrong place. And also when I was looking out to the window it was almost like looking out through dear me, how can I explain it? A window with patterning on. We did have a longer net curtain than is there now but it wasn’t that, it was like a pattern on it. They then loaded me into the ambulance took me to hospital where I was still not really able to, to say that much but I did manage to begin to tell people what I felt and what I wanted but I was still finding that some of these words were still squeezing out from under my fingers. It was like trying to hold a goldfish and it just squeeze away. And I’m not sure how long that lasted for but it lasted to mind my mind for a considerable time.
 
I think from the time, I’m going back now but going back from the time that she put my, put the mask on my face so I couldn’t say anything to actually being able to produce one or two words was probably 10 minutes or thereabouts. I don’t really know.

 

 

Having experienced a TIA Yvonne finds it difficult to decide when she should be mentioning a...

Having experienced a TIA Yvonne finds it difficult to decide when she should be mentioning a...

Age at interview: 54
Sex: Female
Age at diagnosis: 54
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I mean like when I get the numbness when, when I’m sitting in awkward positions, I get up and move around. And if it doesn’t go off, then I would suggest that I would probably think, you know, maybe I need to be calling an ambulance now.
 
But you still, it sounds like you’d fear, you’d find it quite difficult to call an ambulance for a very minor symptom…
 
Hmhm.
 
What you would consider to be a minor symptom?
 
Yes.
 
Is that the root of it really?
 
Yes.
 
Yeah.
 
Yeah.
 
But do you think that, I mean do you, do you, do you think that the ambulance people would be cross with you for calling them out if it wasn’t a…?
 
Not at all [laughs].
 
No, not really?
 
I mean, I’ve worked with them loads, you know. Obviously in my job and…
 
I guess when we’re feeling like that we’re not very rational sometimes are we?
 
No, we’re not. No. And I think my job hasn’t helped me in that respect because I know sometimes when I’ve gone to jobs I’ve thought, “Oh for goodness sake why have you called us, you know, this is just not a police matter.” And then, you know, and I think I know they feel like that sometimes and I think … .
 
Yeah, I suppose it’s a similar sort of service, isn’t it, in that respect? Yeah.
 
Yes, yes. So.

 

some people first sought help from the GP and in most cases the GP recognised or suspected a TIA or minor stroke and made an urgent referral to a TIA clinic or neurology department. Some people made a routine appointment with the GP because they didn’t realise that they ought to be seen urgently, and there were several people who said they found it difficult to get an urgent appointment with the GP. Roger felt let down by the fact that the GP’s receptionist would not give him an appointment on the day he called up for one, and ended up phoning NHS Direct, who told him to go straight to an emergency department to be seen. Later his GP agreed that receptionists should be trained to recognise potentially serious symptoms.
 

Roger found it difficult to get to see the GP because the receptionist wouldn’t give him an...

Roger found it difficult to get to see the GP because the receptionist wouldn’t give him an...

Age at interview: 67
Sex: Male
Age at diagnosis: 64
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The actual TIA came in let me see... two thousand and, January 2007. And I rang the local GP’s, spoke to the receptionist and she said, “Oh come in next week.” And I said, “No, I’m feeling quite ill.” My arm was aching and I had that was the worst part, it was aching. And my sight was alright, my speech… but I was definitely feeling not good, not well. And so, “Come in tomorrow morning. We’ll see if there’s a cancellation.” And I said, “No.” 

So then I put the phone down and rang NHS Direct and they said, “What you must do now is….” they asked me questions, and said, “You must go to... Because it was a very stormy day, stormy weather I walked in to there was loads of traffic around, so the traffic was at a standstill, so to get an ambulance... and I walked into the A & E past all the minors there was triage nurse there who saw to that. 

And it was something which one of our friends, she’s a nurse consultant, a medical one, and she said, “Oh you do realise you were very vulnerable.” And of course, that’s it. It was strange. I walked along sort of as if I was drunk on one side and that was it. 

And basically apparently what I heard, I had had five little they said short circuits or TIAs before. I don’t know if they were TIAs or what they were. But there had been previous instances, when I’d felt not quite with it, as I say for instance.

And the first thing they said in A & E of course, “Why didn’t you come yesterday.” Because they could have actually done other things, but luckily it wasn’t a huge one and I take five various tablets to ….
 
So it was about 24 hours?
 
24 hours, yes, I went into, hmm.
 
And at that point, did you know at that point that it was important to get help…?
 
Yes, because 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. So and at one o’clock, but 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’t…responding?
 
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.

 

People sometimes found it hard to get health professionals to take them seriously. When Mike experienced his TIA he saw a locum GP who was part of the ‘on call service’ but instead of treating him urgently the locum doctor just told him to go and see his GP the next day. Michelle visited the GP several times before she had a major stroke, with symptoms that in retrospect were diagnosed as TIAs, but the GP diagnosed anxiety and neuralgia and she felt she wasn’t being listened to. Sometimes negative experiences like this could make people feel reluctant to consult their GP.
 

Michelle said “it was hard trying to get the doctor to listen that it wasn’t anxiety problems…… I...

Michelle said “it was hard trying to get the doctor to listen that it wasn’t anxiety problems…… I...

Age at interview: 28
Sex: Female
Age at diagnosis: 26
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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…?
 
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.
 
So how did you feel when the doctor was telling you about the anxiety, that they were treating you for that? And you perhaps didn’t really feel that was right?
 
I was really upset and mad and confused because I knew something was wrong and what was happening but because of what was happening it was making me more confused so I couldn’t express what I was trying to say properly.
 
Frustrating.
 
Yeah. I guess it was for both parts really. Because you don’t expect somebody so young to be having these kind of things.
 
I was constantly going back and to the GP with different symptoms and he would diagnose different things such as the neuralgia and [sighs] rheumatism and all different things but like I said, mainly it was in my face and they were just emotional, anxiety problems, that’s what they was putting it down to. So …
 
So, I mean, in terms of your feelings about health professionals that you’ve been in contact with, how do you feel about them and the way that they operate?
 
Very negative. Even now, very, I’ll avoid going to any kind of GP, hospital.

 

 

The locum doctor that Mike saw initially didn’t seem to take his symptoms as seriously as he...

The locum doctor that Mike saw initially didn’t seem to take his symptoms as seriously as he...

Age at interview: 63
Sex: 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' I would have, 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 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.
 
 

Ken would prefer to see the same GP each time he visits the surgery because he thinks it’s...

Ken would prefer to see the same GP each time he visits the surgery because he thinks it’s...

Age at interview: 68
Sex: Male
Age at diagnosis: 68
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It’s a surgery of seven doctors, two nurses and they do a load of private work as well. So, you know, when you phone up you don’t see the same doctor. But I am now find that I can turn round and say, “I want to see X doctor.” And if she’s not there I won’t make the appointment.
 
And that, as I say, manage now to see this one particular doctor and I feel that I’m getting somewhere, you know.
 
So do you feel that if you see that same person each time you’ve got some continuity and she knows what’s happening …?
 
Yeah.
 
… with you…
 
Yeah.
 
...and it’s more, gives you more confidence?
 
Yeah. Definitely. Because if you go and see a doctor, a different doctor every time, all she’s going by is what’s on her screen, she doesn’t know you, so she, you know, you’re a complete stranger to her. If, but if you’ve got someone on a regular basis, they get to know you, your ins and outs, and, all right I know she got other patients but there’s still that patient relationship.

 

The way that people experienced care in hospital and through outpatient clinics varied widely. Many people were very happy with the way they were treated by A&E staff, ward nurses, doctors and consultants (see also Keith above).
 

George was very happy with the treatment he received in hospital and felt that the nursing staff...

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George was very happy with the treatment he received in hospital and felt that the nursing staff...

Age at interview: 77
Sex: Male
Age at diagnosis: 71
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I really cannot fault it. It’s been absolutely marvellous. It really has been absolutely marvellous. No complaints at all.
 
So yes I can’t complain at all. They’ve been very, very, very, very good. The nurses have got a terrific sense of humour as well,. You can have a bit of a leg pull with them and it makes life so much easier. And they’ve been very, very thorough with me. I really can’t complain.

One man who had to have surgery after his TIA was very impressed with the way in which the anaesthetist explained everything and felt reassured by the fact that he was in control and could make choices based on the information he was given. On the other hand some people were less inclined to want to be overloaded with lots of information and were happy to have been given a basic explanation of what had happened and what they needed to do.
 

Phillip felt confident in his decision about whether to have surgery because the anaesthetist...

Phillip felt confident in his decision about whether to have surgery because the anaesthetist...

Age at interview: 72
Sex: Male
Age at diagnosis: 71
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And then of course suddenly I’m in a hospital ward, and this is a new experience completely. Well, you know, I’ve been in other wards before, but it feels like it’s new because I’m in a different ward for different things. And I have to say that there I really found that a very supportive environment. Maybe, I think this is obviously almost ward specific, but this particular ward group were very supportive. They didn’t really wake me up at 4 o’clock in the morning and make me eat breakfast. None of this stuff, you know.
 
But we had some interesting discussions because I kept asking them questions about things and they kept sort of saying, “Yeah, never you mind. We’re going to do this, and just don’t worry about that.” But I think that’s just because they sort of felt I was just being difficult. And they may well have been right.
 
The interaction with the - of course always what you meet here is really not the surgeon. What you meet is the anaesthetist. And so the interaction, the most important interaction, oddly enough, is with the anaesthetist. You do meet the surgeon and, you know, and it’s kind of scary because these are the hands, you know. And, but in general the surgeon is just - I don’t understand this, but it seems to me that it’s very much that he, he’s just doing an operation on a person, and he really doesn’t want to know who the person is. And maybe this is simply because he really can’t afford to have any personal involvement, because it would make everything too tragic. Maybe I’m making all of this up. But the anaesthetist is the person who tells you what the operation is, who tells you what the surgery is. It was the anaesthetist, besides the [Study name], who really explained to me the processes and how this had all happened and the development and all of this. And he was very interested, you know. He, I was very responsive and so he was very happy to spend a fair amount of time talking to me.
 
I had these doubts about having the surgery. And the anaesthetist was really tremendously supportive and even whilst he was prepping me for the operation he was explaining that, “If you really don’t want to go with this, you can still pull out.” And I felt that the fact that the hospital maintained this position that it was my choice till the last minute, if - that was to me a very encouraging sign that these people were really up, right up there.

 

 

Ken emphasises how important it is for health professionals to talk in simple language

Ken emphasises how important it is for health professionals to talk in simple language

Age at interview: 78
Sex: Male
Age at diagnosis: 74
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I found there that the, the you know, they didn’t, quite honestly they didn’t go into it too much. They just said, “You’ve had a minor stroke.” You know, “You’ve got the symptoms, you know what the symptoms are. We, you know, you can expect this or that or anything else and you’ve obviously had these You’ve had a minor stroke.” And that’s what he said, and that’s it.
 
And did, did that feel enough for you? Did that feel …?
 
Yeah.
 
I mean, the only, the only problem I have and I think that most that people have is when they start talking in sort of what you might say is medical-ese in so far as you don’t understand the language that they’re saying, because they come out with so many different initials and acronyms that you, you can’t understand, you have to ask exactly what they’re talking about. Which happens in all forms, all walks of life not just the medical there. You mean, you take it now as at, no matter what profession you go in they’ll start talking in initials and, and you have to ask them to explain what the initials mean.
 
So ideally from your point of view it would be better to get a more down to earth description?
 
R' It would be, it would be far, far better if you got away from this bureaucracy that believes in initials and go back to what word we used to call and what they tried to bring in many years ago called basic English. And then anybody will understand you.

 

A few people felt less well supported than they felt they needed, and some felt quite let down by their experience overall. Some felt that the fact that medical staff were often so busy could sometimes mean that they appeared not to have enough time to give adequate support and information to patients, although this did not necessarily affect the standard of medical care.
 

Frank was interested to know all the 'in's and out's about his treatment and care but staff didn...

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I mean, more information. I mean, more time, of course, is always - even though when I saw people initially at the [second hospital] it was very good at the start, but then later following on the bubble echocardiogram and discussions there, I mean, there wasn’t really time to talk about some of these things, actually. Because I mean you’re now dealing with people who are very busy, a lot of time pressure, and they don’t really have time to sit around and talk to somebody who’s read a few dozen papers on the thing, which might have been nice but , you know. But generally, I mean, the medical side has been extremely good, really.

Some people had more difficult experiences in hospital and afterwards. Sometimes this was due to poor communication which could make people feel frustrated and upset. Vernon believed he had been given permission to leave the hospital but discovered the doctor had not mentioned this to the nursing staff. Michelle (below) had a TIA followed by a stroke, but felt let down by the fact that she was treated by staff who were more accustomed to dealing with people who were much older than her. Gilly found it difficult when she questioned the hospital about the length of time it was taking for her to be seen by a specialist.
 

Michelle was much younger than the other patients in the hospital ward and she felt that the...

Michelle was much younger than the other patients in the hospital ward and she felt that the...

Age at interview: 28
Sex: Female
Age at diagnosis: 26
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They didn’t explain things like [sighs] I don’t know. 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.
 
Right. I mean, in, in the whole scheme of things then how did that make you feel being in the hospital and the health professionals not really communicating very effectively with you?
 
I think that really impacted on my recovery, because I really suffered afterwards.
 
In what way?
 
I kind of like went into a depression but it wasn’t a depression, normal depression it was from the stroke. But it was so bad, even medication didn’t help.

 

 

Gilly had to wait a very long time for a referral and when she tried to find out why was told...

Gilly had to wait a very long time for a referral and when she tried to find out why was told...

Age at interview: 51
Sex: Female
Age at diagnosis: 51
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When I did kick up a fuss at the hospital and say, “Look this has happened, you know a number of weeks ago”, I think it was about eight weeks before, afterwards I contacted them and said, “Look this is eight weeks, I’m still waiting”. And they said, “But there’s nothing on the referral letter about a TIA.” And I was so shocked I had to put the phone down on the table and walk round and just calm down and came back and picked it up and said, “The Registrar very clearly said to me and my manager that he felt it was a TIA.” “Ohh”, who was trying her best to sort this referral out, just said, “Well, it’s not here on the letter and I don’t know where you’ve got that idea from”. [sighs] So you, you have to be, you know, I’m repeating myself, because the Registrar said that, “Well the Registrar hasn’t written it down on here.”
 
So communication, the whole communication …
 
Communication …
 
.. side of things …?
 
The whole thing about communication I think really, I think I know now that if we have something like a TIA we have, I had real difficulty in receiving communication and understanding what people were saying. So it was very handy for me that the manager was there and I’ve had no contact with her since, only this letter and the form. So we haven’t been chatting. She’s very clear of what she heard, and I’m very clear of what I heard.

 

Some people felt unable or unwilling to ask too many questions, either because they felt they didn’t want to be a nuisance, waste the time of busy staff, or sometimes because it could be difficult when there were so many things to think about especially when they were experiencing symptoms such as disorientation, confusion and speech problems. Clare found it helpful to record the consultation she had with the specialist on a small dictaphone because she felt she wouldn’t remember what she had been told otherwise.
 

Ann said at first she just needed to listen to the doctor and wasn’t up to asking too many questions

Ann said at first she just needed to listen to the doctor and wasn’t up to asking too many questions

Age at interview: 79
Sex: Female
Age at diagnosis: 72
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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.
 
So you’re thinking about not actually saying much to the doctor until the end of the appointment, that time you were talking about? Or when you say you didn’t ask the right question, what kind of thing were you thinking of?
 
Oh I see. I think probably the first time it was all so new, it was all such a surprise, so one really just wanted to listen, having reported what had happened. And this curious thing about being able to cope with the practical side of things of, “Well, if I don’t know what time of year we are or whereabouts we are, just go and look at the diary.” So there was a bit of brain that seemed to be functioning rather well, [laughter] but it certainly was a very strange sensation of being lost in time somehow.

 

Whilst many people felt that they had been given their diagnosis in an acceptable and straightforward way, a few people said they felt that the consultant needed to be more sensitive and aware of the impact of what was being said.
 

Yvonne felt the consultant was insensitive when he gave her the diagnosis and showed her an area...

Yvonne felt the consultant was insensitive when he gave her the diagnosis and showed her an area...

Age at interview: 54
Sex: Female
Age at diagnosis: 54
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Can you just say a little bit more about that? You know, about, about how it actually made you feel when he was talking to you?
 
It felt as if he was almost dismissive as if it was a very minor thing and, you know, kind of, “I don’t know why you’re really bothering us with it.” It felt, and I said to my husband afterwards, I said, “That’s actually quite a major thing in my life now, you know, going with everything else that’s happened over the last, you know, 18 months,” I said, “and to tell me as if he telling me as if I had a, a cold…” I mean, obviously he comes across it all the time and he comes across far more serious cases, and I understand that, but I just feel that he could have been a little bit more subtle in the way that he told me.
 
Just to actually point at a picture of my brain and say, “Well, there’s your brain damage and that’s how we know that you’ve had a stroke.” You know, you mention brain damage and people think, “Oh my God, you know, what, what brain damage?” You know, because brain damage to you means somebody who can’t, you know, perform certain functions of things. And, you know, just to actually say, well actually it’s, it will repair itself, there wasn’t any of that, you know.

 

 

Clare says consultants need to show empathy and sensitivity when they give patients a diagnosis

Clare says consultants need to show empathy and sensitivity when they give patients a diagnosis

Age at interview: 50
Sex: Female
Age at diagnosis: 48
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I mean, the biggest shock was having brain damage, because I was told that because it was a TIA that I wouldn’t have brain damage. And I had headaches and I went to my GP and again like I, I said before, they’re, they’re very good my GPs and they referred me to have a scan, a CT scan and that’s when they picked up I had brain damage. And I walked in to see the consultant for the results and bless him, on the computer was a picture of my brain and he said, “There’s your brain damage.” And I thought, “Hmm, let’s have a little bit of sensitivity here, shall we?”
 
You know, “There’s your brain damage. It’s not too bad, it’s only about that much.” I don’t give a shit, it’s still brain damage.
 
Difficult, yeah.
 
Yeah. Don’t point at it and have it on the screen when you come in.
 
So I suppose that’s the kind of thing you mean when you talk about the…
 
Yeah.
 
… bedside manner. Kind of thing?
 
Let, let’s sort out a little bit of empathy. Yeah.
 
It’s important, isn’t it?
 
Yeah, it is because it lasts the rest of your life. Because I can still hear him say it, you know. I don’t think they quite get their head around that when you first have a traumatic experience what is said to you take with you to the rest of your days.

 

Some of the people we interviewed had taken part in a research study about TIA and minor stroke (see ‘Taking part in TIA research’). Most of these people were impressed with the way in which the research nurses and doctors had the time and expertise to talk to them in depth about their experience.
 

John said he was treated as an adult by the research team

John said he was treated as an adult by the research team

Age at interview: 59
Sex: Male
Age at diagnosis: 58
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I was lucky because - I’m lucky in many ways. The fact that the GP was part of a research programme and I live close to a major hospital with an extraordinary research group. I feel fortunate that [laughs] I live in Britain with the NHS, who just do things. You often hear the phrase, yes, you might moan and groan about routine treatment, but when it comes to an emergency, extraordinary. I’m fortunate that I’ve been treated as an adult, a relatively sentient adult, so good conversation, good advice. I feel I know what has happened. Things have been explained to me. I’m very happy to be able to take part in any research work that’s going on.

 

Some people had quite difficult experiences in getting a diagnosis or afterwards. Some felt they didn’t want to make a fuss and complain. A few people did make formal complaints about their treatment but this could be fraught with difficulty, as well as adding to the pressure of an already stressful situation.
 

Susan says the doctors she has seen don’t agree on the diagnosis of TIA and she doesn’t feel she...

Susan says the doctors she has seen don’t agree on the diagnosis of TIA and she doesn’t feel she...

Age at interview: 55
Sex: Female
Age at diagnosis: 52
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I’ve always stood up and I’ve always challenged everything. And I just feel that people are, they just don’t, I’ve never had prop, what I call proper treatment, for now that I’ve read up I’ve never had scans or anything. I’ve asked for scans, I’ve asked for all sorts of tests but I’ve never got a …
 
And why is that? Is that because somebody that you’re dealing with doesn’t feel that, that you’ve actually had a TIA?
 
That’s right. I changed doctors for that reason. Because I felt that I was going for appointments and I wasn’t being ….
 
So although…
 
.. taken seriously.
 
.. you were put on aspirin you were actually not given any further tests or …
 
No. No. No. But I had numbness. I had numbness down the left hand side. I was dropping things. I was shaky, I was confused.
 
And people just think you’re a hypochondriac.
 
And what does that make you feel when you kind of realised that that’s can, can some, sometimes people’s perception?
 
It’s scary. Because I’m now housebound more than I am going out because of it. And I feel if I’d had more, I actually asked for a brain scan and I asked for lots and lots of tests and I challenged the consultant and he just put it down to stress, which made me very, very angry.
 
And what kind of interactions did you have with that person? Was it, was it a difficult conversation?
 
It was because I went there, I waited weeks for a hospital appointment and then I challenged him and because I actually proved that I had my medical notes out and I’d been hospitalised in [place], because I’ve moved from [place] to this area, he was saying one thing and I had it down on paper that it was there written TIAs.
 
Doctors are not gods, nor are consultants. And they don’t like it when you challenge them.
 
And when you say they didn’t, what kind of reactions have you had from those people?
 
They don’t seem to they seem to dismiss you and say that you know, you’re either a hypochondriac, not in my case because I know I’m not and if anybody did say that to me then I’d have, I mean, I do a lot of reporting in to the PALS at the hospital with different things that have happened to me.
 
Oh, the Patient Liaison …
 
Yeah.
 
Yeah.
 
And everybody gets two goes with me. They go, I’m very nice, I’m very polite but if they don’t get their act together then I go to the top.
 
So what would you say to doctors who don’t listen, or don’t seem to acknowledge what you, your point of view?
 
Take more notice. Look at the person that you’re seeing, don’t put your head down and write, trying to write something and get you out the door. And this, this doesn’t, I’ve got a very good GP at the moment who’s listened to me and he’s trying to help me. But previous GPs, they’re just all too quick to pick up their pen, write a prescription and get you out the door.

 



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Last reviewed June 2017.
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