Gilly - Interview 29
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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.
Gilly collapsed at work and was taken to hospital where she found it difficult to understand what was being said by the hospital staff.
Gilly collapsed at work and was taken to hospital where she found it difficult to understand what was being said by the hospital staff.
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...
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.
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...
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
Gilly thinks health professionals should realise that people who may have suffered a TIA can find it difficult to process spoken information
Gilly thinks health professionals should realise that people who may have suffered a TIA can find it difficult to process spoken information
Gilly found the internet very helpful and used it to contact groups and organisations for help with things she was finding difficult
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.
Despite seeing an emergency doctor and GP who both suspected she had a TIA Gilly was not given a referral to specialist services.
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.
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
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.
Gilly has not been prescribed any medication even though the initial assessment at A&E said that...
Gilly has not been prescribed any medication even though the initial assessment at A&E said that...
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
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.”
Gilly is still waiting for a proper diagnosis after several months but in the meantime has been unable to go back to work
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.
Gilly felt very insecure for some time afterwards and didn't want to go out
Gilly felt very insecure for some time afterwards and didn't want to go out
Gilly felt like a completely different person afterwards and has had trouble coming to terms with...
Gilly felt like a completely different person afterwards and has had trouble coming to terms with...
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
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.
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
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.
Gilly feels it's important that health professionals are clear about things, and that they treat patients with respect and kindness
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.