TIA and Minor Stroke

Messages for health professionals

We asked the people who were interviewed what messages they would like to convey to health professionals based on their experiences.

Many people were grateful for the care they received and felt well supported at the time they had their TIA or minor stroke, and afterwards. Keith said that he couldn’t fault the way in which he had been treated by both hospital staff and his GP, and likewise Angus was impressed with the speed and efficiency with which he was dealt with. Dennis said “I can only pay the highest of compliments, really. I’ve been very professionally dealt with. What more can one ask?

Brian felt that everyone he had come into contact with during his treatment had done a wonderful job

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Age at interview: 77

Sex: Male

Age at diagnosis: 77

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In all honesty, the medical staff that I have come across and been involved with I think have done a wonderful job. Hence I’m still here talking to you [laughs]. I told my GP, after I’d been in and had my heart bypass, I could not fault the service from the consultant down to the cleaner. And I still stand by that. In this area particularly I think we’ve got wonderful hospitals and staff. And I don’t think you’d better it anywhere. Certain aspects, I think, are better than most. But I’m very proud of the medical staff we have in this area and I think I always will be.

With the benefit of hindsight some of the people we interviewed said that they felt it was really important that health professionals were trained to recognise the signs of TIA and minor stroke, because early detection and referral is vital to ensure that treatment is offered as quickly as possible. Roger (below) had phoned his GP surgery when he was experiencing symptoms that he himself didn’t recognise or understand, and the receptionist had told him he couldn’t see a doctor until the next day. Mike saw a locum who was covering ‘out of hours’, and was told to see his GP the next day, but by that time it was too late and he had had a stroke. Mike felt that if he had been sent straight to hospital the stroke may have been prevented and felt that the locum should have been more vigilant “don’t just say go and see your GP – that’s a cop out”.

When Roger phoned the surgery asking to see the GP the receptionist didn't offer him a same day appointment and he was left trying to deal with things himself

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Age at interview: 67

Sex: Male

Age at diagnosis: 64

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I think, try and recognise if someone contacts you what you can do to help and if you’re a receptionist perhaps you can definitely refer to a GP or a boss or whatever, a supervis… superior. But I feel there needs to be more, stroke particularly needs to be taken more seriously probably by the professionals in this, and obviously it would be good if you could have a GP service which was more round the clock, as it used to be, and I understand they may be bringing that back at some stage.

So it sounds as though the hours of the surgery is kind of quite …prohibitive of being able to...

You are very cut off aren’t you. There’s something about yes, nine to elevenish and then four till seven, four to six sorry. And then no weekends. They’ve started bringing two evenings but I think it would help more towards the old idea. And of course in the old days the GP would come round after hours to see you and see what was up. And straight away they’d know because they dealt with you all the time. Whereas, I think the NHS Direct is very good and they recommended me going to A & E.

But it was through NHS Direct that you got told to get medical attention rather than through your GP...

Yes, it was NHS. Yes, absolutely, so. And it’s a yes, yes GP and no …

And I presume now you’re aware now of that kind of delay.

Yes, yes.

That’s quite an important aspect.

yes.

The quicker you’re seen the better the outcome I think

Yes, yes. I did actually complain to the PCT in London.

Did you?

Yes. And to the head of the practice. But they tried, what they said was that we don’t deal with, you’d rather see people who’ve got ongoing problems surely at home rather than… And I just felt well it would be nice if you could deal with somebody who’s presenting an unusual problem, presented straight away in front of you more or less….

Sorry they’d rather see people who …?

Who are ongoing problems.

Who’ve got ongoing problems?

Yes, you know the one. And with yourself it said, because if you presented to the surgery, we couldn’t do anything for you anyway, you’d have to go to hospital?

Is that what they said to you?

Hm.

That’s… how did you feel about that?

That I meant nothing much to them at all really. Like a small, like I wasn’t....they were talking about a small, well insect on the floor, I think they’d feel more about an insect then the way they said that. So very, very lowering to me.

And they must recognise - sure they’ve got a very responsible job, but they must make it even more worthwhile, by recognising these signs straight away. I’m sure that had my normal GP had seen me, they would have ...although it’s a great, and also if you see the GP generally it should be a feeling of, it’s comforting. You get that comfort. And that must be part of the getting well. They could have helped tremendously with that probably. Whereas I felt on my own, I talked on the phone to somebody and they helped me along as best they could. But going along you felt suddenly as though you were very vulnerable like.

And you also had to initiate those things yourself?

You’ve got to initiate everything. You’ve got to go and see the triage nurse, haven’t you, and say well I’ve got, they say it’s a stroke, and of course they’re very good and they go through the process. But you feel all the time, you’re very much of a number and…

It sounds as though you didn’t feel, you felt a bit abandoned really by your GP practice?

That’s right, yes, certainly, yes, yes, yes abandoned by them.

So I mean going back to, we’re talking about messages to different people, the messages to the health professional would be … to take things seriously it sounds like?

[laughs] yes, yes, get it together. Or get, go for it or something. But get on the job, and yes, take it a bit more. I also think receptionists in particular, are very much, they seem to be there to put people off and to act as a sort of defence, which they sort of are really. But they don’t encourage people to go in. And all the time you’re thinking I want to do this job, I want to go to the GP or the dentist but I’ve got to go through this, these receptionists, and you don’t like… that’s another thing which I don’t want really.

Which makes it more difficult?

Yes, yes, it’s awful yes, yes.

So really as you’re saying when you’re feeling vulnerable and ill…

Yes, and ill.

You really want things to be made easier for you rather than to be?

That’s right. Yes. Because stroke causes, is also cause by stress you don’t want that stress initially to come in because something hasn’t gone well, when you’re not happy with the situation.

Some people suggested that it would be helpful if GPs did more preventative checks when they saw people for routine appointments, something like an MOT where you would have your blood pressure and cholesterol levels checked regularly.

Rich wonders why GP's don't give their patients a regular health check or 'MOT' so that risk factors can be picked up and monitored

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Age at interview: 66

Sex: Male

Age at diagnosis: 62

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There doesn’t seem, as a run of the mill, they say, go, you’d go and see your doctor or something, there doesn’t appear, and I’m surprised because there’s such a focus on strokes now, you know, in the media, you know, you’ve got this, this new thing FAST that they put out. The, if you go to the doctor and you’ve not been there for a while, I’m surprised the doctor isn’t kind of prompted, “Oh, when did you last have your blood pressure? Have you had your cholesterol checked?” Because I believe those are two of the, the factors for strokes.

I’m surprised they don’t do it, because there are, you know, you can have a statin to help your cholesterol. And I know two or three, not the two I mentioned but one other guy he was quite poorly [hammering] and they didn’t know what was wrong with him. Eventually, after about 12 months they found his cholesterol was twice mine and he, he was being, being put on medication and hasn’t looked back. Different bloke.

So your, one of your messages would be for GPs to do a kind of a bit of an MOT…?

I, I, …

No and again.

Yeah, MOT.

Yeah, because basically I go and have a yearly MOT because I’m on the list, I’ve had a TIA.

I think yeah. I’m surprised there isn’t, you know, there’s a, there’s enough checks these guys do as doctors and I’m surprised because stroke is such a debilitating thing

The message that I’d give to a health professional and I would, I would definitely say, you ought, I think they ought to, if they’ve not seen a patient and they, you know, like me I was a, in good health, maybe they ought to look through their patient list and say, “Oh we haven’t seen these people in the last 12 months” and get into a process. Maybe they ought to have their cholesterol checked and their blood pressure, I don’t know, as a matter of course. Maybe, why don’t people have a yearly MOT on their health, for instance.

Frank (below) felt it was important that health professionals made time to discuss treatment and answer any questions, but that sometimes they were so busy that this wasn’t possible.

Frank was interested to know all the 'in's and out's about his treatment and care but staff didn't always have enough time to be able to answer all his questions

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Frank was interested to know all the 'in's and out's about his treatment and care but staff didn't always have enough time to be able to answer all his questions

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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.

A number of people felt that at times things had become more difficult for them because the health professionals treating them had not communicated clearly enough, particularly because as Gilly (below) points out, when people are feeling vulnerable and possibly disorientated or confused by what is happening at the time they are not always able to process the information they are given easily. Yvonne (below) had been told by her GP that she was being referred to the TIA clinic, but didn’t think to explain to her what that meant, so when she arrived at the clinic she remarked to her husband “Gosh, there seem to be an awful lot of people here who appear to have what I would say were stroke symptoms”, but it wasn’t until she saw the specialist that she realised why she had been referred there. When she went in to see the consultant he showed her an area of brain damage on a computer screen, which shocked her as it was the first time she realised that she had had a TIA and stroke. Clare had a similar experience, and says that the way you are told these things has a big effect on you.

Gilly feels it's important that health professionals are clear about things, and that they treat patients with respect and kindness

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Age at interview: 51

Sex: Female

Age at diagnosis: 51

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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.

And not an explanation of what a TIA is, or did you have, did you get given that?

I suppose he said, “Do you know what a TIA is?” And I said yes because I do.

The GP said that?

No, the doctor in hospital.

The doctor, right.

I, my manager had said, “Look, you, I’ve brought you to hospital,” she said it again and again, “because I think you’ve had a TIA and I’m not happy with your responses.”

Two things I think really to health professionals. One is, clear communication, precise communication. I know how long is a piece of string, you can’t really say what’s going to be the outcome but try to avoid using words like quick or rapid or soon because that really doesn’t have any definite outcome. And I think be kind. I think lots of health professionals, having worked in healthcare myself, we can be efficient and forget how to be kind. And kindness goes a very long way. Even if you can’t provide and answer, and they couldn’t provide an answer for lots of things for me, lots of health professionals haven’t been able to in the last two months, but what stands out are the people who’ve been kind and they’re the ones that I remember. And I can forget about the other ones.

But the other ones sting. Because they may have been clinically brutally correct but they hadn’t been kind or it hasn’t come across as kindness. It’s come across as backing their corner or, but communication, clear communication …

When we don’t know what’s going on we feel very powerless and I think all of us that, work in health care we have to be reminded again and again and again that having our health taking away form us disempowers a patient and we feel disempowered enough, you know, often we’re there in a gown split up the back or whatever. We don’t have our personality, we don’t have our identity. And to be dismissed and for our cause, for our concerns, genuine concerns to be dismissed, disempowers us anymore. So in the end we become very passive.

Yvonne was told she had a small area of brain damage 'as if it were a very minor thing'

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Age at interview: 54

Sex: Female

Age at diagnosis: 54

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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

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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 said before, 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, 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 patients, both young and old, felt that their treatment and diagnosis were affected by the health professional’s perception of their age.

Jennifer found it upsetting when she was admitted to a geriatric ward after her TIA and her message to health professionals is to think what you'd want if it was your own family

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Age at interview: 55

Sex: Female

Age at diagnosis: 53

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The health professionals should think would they like their mother, their father, their sister, their brother treated in this manner.

I don’t think so. You know. People at that time are very vulnerable. Very vulnerable. Would they like to be put into a ward they’re all geriatrics in their 80s and 90s? And are so ill they cannot even speak. When you’ve had a TIA? I don’t think so.

So you message is about thinking about how they would like to be treated themselves or their …

Yeah.

.. close family?

Yeah.

And then apply that to everybody.

Hmhm. Def, definitely.

Brian says health professionals shouldn't assume that a stroke or TIA is an inevitable part of ageing

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Age at interview: 85

Sex: Male

Age at diagnosis: 84

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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.

Michelle was only in her 20’s and had several TIA’s before having a full stroke five months later, but doctors put her symptoms down to anxiety because they didn’t expect someone of her age to have a TIA or stroke.

Michelle says health professionals need to look at the symptoms, not the person's age

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Age at interview: 28

Sex: Female

Age at diagnosis: 26

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I think if they’d had, if they’d had realised what was happening earlier they could have possibly stopped the big stroke from being as severe as it was and then my symptoms wouldn’t be as bad as they are. And it wouldn’t have impacted on me as bad.

So do you feel quite, a bit bitter about that? That they didn’t act on that, or understand what was going on in the first place to, to prevent that from happening?

Yeah.

Yeah?

Hm.

So, in terms of your message for the health professionals in that case, what would that be?

Just because of the age doesn’t rule out anything. Young babies, children can have TIAs, stroke and people that are presenting with them kind of symptoms should be checked and not just disregarded.

(See also ‘Communication with health professionals’.)

Last reviewed June 2017.