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Gilly - Interview 29

Age at interview: 51
Age at diagnosis: 51
Brief Outline: Gilly collapsed at work and was taken to hospital by her colleague. Although TIA was mentioned as a possible diagnosis, Gilly was told to see her GP the next day, however some months later Gilly still does not have a definitive diagnosis and is still waiting for an appointment with the neurologist.
Background: Gilly is married and has five children who are mostly now grown up and living independently. Ethnic background; White British.

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 Gilly was at work one day when she collapsed and found herself coming- to on the floor. She felt disorientated and wasn’t able to communicate properly. Her manager accompanied her to the hospital A & E department where a doctor initially suspected she may have had a TIA and wanted to admit her to hospital, however in the event she was given a series of tests, and sent home after several hours and was advised to see her GP the next day. By the evening, Gilly felt confident that her symptoms had subsided and she felt back to normal. She visited the GP the next day and was told that she would be referred to a triage clinic that dealt with unexpected events. However, inexplicably, the referral did not come through until 2 further months later, and only after she and her GP had put pressure via phone calls and letters to get her case attended to. At the triage clinic she was told that she would be referred to see a neurologist, but was still waiting for an appointment some months after the episode took place. 

 
During the months that she has been waiting to be seen by a specialist Gilly has been on sick leave because her employer will not allow her to return to work until she has been given the all clear by a doctor.
 
Gilly has found it immensely frustrating that her referral to see a specialist has taken so long and is still not resolved [at the time of interview.] Months have gone by during which she has not been perscribed any medication or been given any help or advice about what happened to her. Whist she appreciates that sometimes things don’t run smoothly, she feels that she has not been listened to by health professionals and has not been afforded the best possible treatment, particularly as she now knows that suspected TIA and stroke patients require an urgent referral and scan within a short timeframe. Although she was told that she would be seen ‘very soon’ this has not in fact happened and she feels very let down. The fact that she has not been seen by the consultant specialist to this day leaves her feeling that her case is not being taken seriously. As a result of her experiences Gilly feels it is very important that any doctor who suspects a patient may have had a TIA should act quickly and ensure that immediate assessment and treatment are offered as a matter of course. 
 
 

Gilly collapsed at work and was taken to hospital where she found it difficult to understand what...

Gilly collapsed at work and was taken to hospital where she found it difficult to understand what...

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The first time I realised anything was wrong was when I woke up and I had my head in the door jam at work. And all I could think of was, “What on earth has happened? Why is my face on the floor? And why does my shoulder hurt?” Closely followed by, “What’s happened with what I was doing at the time?” And I really didn’t know what was happening. I was very shocked. Didn’t know what to do. Didn’t know whether I should stay there or get up or anything. And I couldn’t seem to work out what was going on. I don’t really remember anything else about that at all. I remember going through my place of work, I can remember getting into a car. I can remember my manager being fairly directive and saying, “Do this. Do that. Get your bags. Walk here. Walk there.” And I don’t really remember anything then till we got to the hospital.
 
She took the decision to take me because we were working near the hospital so it was easier and quicker just to go. I found, once we got to the hospital, I couldn’t really understand what they were saying at clerk in. Their voices seemed very strange, the words seemed very peculiar. I couldn’t really work out what they were saying and when I could work out what they were saying I couldn’t work out how to get a reply out back to them. And so what, I couldn’t really think about what they were saying to me because all I could think about was why I couldn’t talk properly. And that was really, really frightening. It was, it was very frightening. I was very glad I had my boss with me. And she sort of held my hand and did all the, the talking and the, you know, that sort of thing. And then we just waited, until we were seen and she did most of the talking.

 

 

Gilly was seen at A&E and discharged with a referral to a ‘triage clinic’, however some months...

Gilly was seen at A&E and discharged with a referral to a ‘triage clinic’, however some months...

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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 …” She was very supportive, really brilliant, fantastic. And said, “Well we’ll just have to wait for the diagnosis now” 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.

 

 

Gilly was sent home without a clear diagnosis or referral and 10 weeks later she is still waiting...

Gilly was sent home without a clear diagnosis or referral and 10 weeks later she is still waiting...

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I thought I knew what the next steps were for when people had TIAs because although I’ve never worked in a stroke ward, I have worked as an NA in hospitals and I do kind of know a little bit which is probably dangerous. And my understanding was if you had a TIA, you had a scan and you seen by a stroke specialist within a week. Certainly in a city. And I think everywhere else as well.
 
So when that didn’t happen and when he said, “Well what we do here is, we put you through this other clinic, so you’ll be seen and you’ll be seen quite soon.” And I presumed that ‘you’ll be seen quite soon’ meant you’ll be seen quite soon. It never crossed my mind it would be two months. And that was with a lot of pushing.
 
And when the triage nurse mentioned the neurologist then it was at that point that you kind of, was it at that point that you felt, ah, at last I’m going to get some help?
 
I really felt that we had now reached something that was going to be trying to explain what had happened. I knew that something had happened although I couldn’t talk a bit and now I was fine I knew that all the things that had happened from the following day on had happened suddenly overnight. Very quick fast change. And, and when things happen with our bodies suddenly then there’s a very swift, big change overnight I know I only know a bit but I know that’s dangerous. And I know it has to be followed up. So I was just, I am, I remain very pleased that they’ve done that and that they have referred me.
 
And have you been to see the neurologist yet?
 
No. Two weeks after being to the clinic we still don’t, my referral letter was still on the doctor’s desk yesterday, so it had been sat on his desk, for administrative reasons, that’s out of their control a bit. But it’s, still that my referral letter is sat on the doctor’s desk two weeks later, so I’m in the process of chasing that up. So I’m phoning them twice a day. And I will continue phoning them twice a day until that letter …
 
And, I mean, how is it, how is it making you feel having to instigate all this action yourself to try and get seen?
 
At the beginning I just couldn’t, I presumed I would be seen first, early, at the beginning. And to be honest I was too tired. I’m very, our house is silent and I sleep a lot and I’m very tired. When there’s nobody in the house it’s, it’s very quiet, I don’t talk. It’s, …
 
So you’ve been off work for a couple of months now?
 
I’ve been off work ever since, since then, so I’ve been off work since mid-April.
 
And we’re now at the beginning of July. When I wasn’t so tired, when I became not quite so tired and a bit more, you know, with it, I realised that something was wrong. And I realised that sitting and waiting wasn’t going to bring anything so I had to, I had to hassle. I feel ungracious doing that but I feel I feel a bit of a nuisance and I feel a bit, well I feel very bolshie. But I’ve learnt that if I don’t do that in this set of circumstances nothing would have happened.

 

 

Gilly said that afterwards her sense of smell and taste changed dramatically which was upsetting

Gilly said that afterwards her sense of smell and taste changed dramatically which was upsetting

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I was discharged quite late at night and I came home. And everything seemed fine. I could talk, I could reason. Had a little chat with my husband about we’d done the night before and the day before and what he’d been up to in the evening. And then we went to bed. And then it was when I woke up in the morning that I realised that although I could talk perfectly fine now and although I could hear everybody, everything was now very, very different for me. He offered me real coffee and I was nearly sick, just smelling it and I certainly wouldn’t have drunk it. And I still sort of, two and half months on, can’t stand real coffee.
 
But you could before?
 
Loved it.
 
Yeah.
 
Loved it. He gave me some breakfast and I, I looked at him and thought, “Well is having a joke?” I think I made a flippant comment about it and realised quite quickly that he wasn’t having a joke and this was real food. And I was just appalled.
 
It just tasted very, very, very, very strange, very odd. It was, it was like clay or plasticine without the smell.
 
So the taste was different?
 
Taste had, had gone, so I could, I could smell it and I could kind of feel it in my mouth but it didn’t have any taste. I was really shocked, and I was really upset. And I didn’t at the beginning put the two together, I didn’t realise, “Oh I was in hospital yesterday for half of the day and now I can’t taste.” I didn’t really, it took me quite, quite a while to realise that this was real. And then I thought it would go away, and it didn’t.

 

 

Gilly thinks health professionals should realise that people who may have suffered a TIA can find...

Gilly thinks health professionals should realise that people who may have suffered a TIA can find...

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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.

 

 

Gilly found the internet very helpful and used it to contact groups and organisations for help...

Gilly found the internet very helpful and used it to contact groups and organisations for help...

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Internet. I found the Internet enormously helpful. Very helpful. There’s, there’s a whole heap of information out there, it’s knowing how to get hold of it. And lots of sites are linked so one site might be recommended to me, it might not have quite what I want but on the computer web, website there’s usually a box saying Links, that’s the one to go into and then go and find something. So although I haven’t got a diagnosis, I have got one doctor said he thought it might be and that was good enough for me. So I’ve, I got in touch with other people shamelessly hunted down associations and societies and groups and asked for help.
 
And is that something that you would tend to normally do? Ask for help? Or is that something that you find difficult?
 
In some parts of my job I’ve signposted other people so I tend to take the view that you have to take your own medicine. And I know that’s what I had to do. Because I didn’t know if I was doing something that was going to put me at risk of this, this happening again.

 

 

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

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

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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, and…” She was very supportive, really brilliant, fantastic. And said, “Well we’ll just have to wait for the diagnosis now” 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.