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.

More about me...

 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 was being said by the hospital staff.

 

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...

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...

 

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

 

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 it difficult to process spoken information

 

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 with things she was finding difficult

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 referral to specialist services.

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.

Gilly was told initially in A&E that her symptoms looked like a TIA, but she is still waiting for a correct referral and so has not yet had a definite diagnosis

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’re 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 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.

Gilly has not been prescribed any medication even though the initial assessment at A&E said that...

 

I saw no specialist or 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.

 

Were you given any medications at all to take?

 

I was given no medication at all.

 

You weren’t told to take aspirin or anything like that?

 

No, I wasn’t told to take aspirin,

 

And not by your GP either?

 

No. Not by my GP.

 

Did you know about those ….

 

I thought ….

 

... medications…?

 

… that you were supposed to have aspirin but I’d heard recently in the spring of this year, in 2010 that some things , I didn’t know if it was, I didn’t really know what I could remember and what I thought. I thought if you had a TIA then everything swung into action and you ended up with a scan. Or, well the last 24 hours had shown that didn’t happen. So I’d, I was obviously wrong. So I was quite prepared to believe that I could have been wrong over half an aspirin.

 

And so I didn’t argue, I just went home, did as I was told.

 

Gilly had to wait a very long time for a referral and when she tried to find out why was told that the registrar she had first seen at A&E hadn't mentioned a suspected TIA in her notes

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.

Gilly is still waiting for a proper diagnosis after several months but in the meantime has been unable to go back to work

I’m walking and I’m talking so I’m fine. Well I’m not fine, I can’t go back to work so I’m haemorrhagingmoney. Thousands have gone. Which doesn’t make me unique, it happens to everybody. But thousands have gone and I haven’t got a diagnosis.

 

I, sometimes obviously think, well nobody, obviously they don’t think that what’s happened to me is a TIA otherwise surely to goodness something would have happened. I’m sure it’s just logistics and I, I’ve just ended up pulling the short straw in that hospital, there’s nothing we can do about it. But unless I’m careful I can end up thinking, “Well, didn’t really happen.”

 

Because it hasn’t …

 

I should be back at work.

 

.. do you feel that because it hasn’t almost been legitimised by …

 

Yeah.

 

... having a diagnosis.

 

Yeah. I’m just dossing. Why aren’t you back at work? My sister said, amusingly at the time, I think, I thought, but I don’t anymore, after a week she said, “Go back to A&E, tell them you’ve got a cracking headache and you’re seeing lights, they’ll admit you in a flash.”

 

Now at the time I said, “You can’t do that, because I haven’t and I’m not.” She said, “Well you’re going to be sit, sitting around waiting for ages.” Now I now, I actually wouldn’t have done it but I can see this …

 

Is it tempting?

 

Well I can see why people do it.

Gilly felt very insecure for some time afterwards and didn't want to go out

 

It’s made me feel very, very less confident, my husband would say I am less confident now I don’t even for a very long time I didn’t even want to go out. Because if you, if you’re doing something normal at your place of work and everything’s normal then you can end up on the floor and then you can be off work, well where’s safe? Which is, I know it’s very pathetic in one way and very sort of melodramatic but that is actually how I felt.

 

Well I suppose it’s …

 

I felt very unsafe.

 

..a protective mechanism, isn’t it?

 

Very unsafe. I felt safe in my own home where I could control my environment. So for about a month I was OCD almost. Every day the floors were hoovered, polished, you know with, completely over the top.

 

A kind of control thing?

 

Absolutely ,totally. Completely, obsessively so. Now that eased off after about six weeks.

 

Gilly felt like a completely different person afterwards and has had trouble coming to terms with...

 

I was really shocked. So I didn’t seem to appreciate food. I didn’t seem, to appreciate music, I didn’t seem to appreciate even my favourite books.

 

It sounds like you didn’t feel like you were you anymore?

 

I’ve found it very, very, very difficult. It was who I was as a person and my identity, the sort of, you go for meetings or groups or training or learning and you have the icebreaker, you know, say four words that express who you are. Well they’ve all gone. Or they’d all, I felt like I wanted some, to say to somebody, “Who I am has gone and I’d like me back please. And whoever’s put, whatever has, is, is here isn’t me. And I don’t understand me anymore.”

 

Gilly stressed the importance of keeping in touch with your friends even if sometimes you don't think they'll understand what you're going through

Keep friends. Keep friends. Keep the channels of communication open with friends and family. If we can’t do it the way that we normally do it do it another way. I found talking on the phone very difficult. And I still do. Email. There’s Facebook. There’s Twitter. However old we are. There’s postcards. There’s letters. Meet up with people for a coffee. I’ve had to learn that I need to do that otherwise I become very isolated.

 

I’ve got to take a risk with people. I’ve got to take a risk they won’t understand and they’ll get offended. Or I’ll cry. Well I might cry, in fact it’s probably very likely I might cry, but that doesn’t matter, they’re my friends, they’re my family, they’ll understand.

 

And if they don’t, there’s nothing I can do about it. That’s their problem then and it’s not mine and I, yeah.

Gilly said you need to be proactive and keep communication open with friends and family even if it feels a bit risky to open up

Keep friends. Keep friends. Keep the channels of communication open with friends and family. If we can’t do it the way that we normally do it do it another way. I found talking on the phone very difficult. And I still do. Email. There’s Facebook. There’s Twitter. However old we are. There’s postcards. There’s letters. Meet up with people for a coffee. I’ve had to learn that I need to do that otherwise I become very isolated.

 

I’ve got to take a risk with people. I’ve got to take a risk they won’t understand and they’ll get offended. Or I’ll cry. Well I might cry, in fact it’s probably very likely I might cry, but that doesn’t matter, they’re my friends, they’re my family, they’ll understand.

 

And if they don’t, there’s nothing I can do about it. That’s their problem then and it’s not mine and I, yeah.

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

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.