This is Robert and here he discusses his experience with diagnostics and wanting to know the type of EDS he has.
Transcript (auto-generated)
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What part of the diagnosis process do you think could change? I've been left to my own accord. I've been asking the Rheumatology Department on the last two occasions I would like to know what type of EDS I have. Oh, why do you want to know that? You don't need to know about that now. I said, well I'm suffering with it. I've never been told what I have. I was told by a junior doctor, I would imagine you've got either type 3 or type 4, but nobody's ever done a genetic testing to see what I've got. As I said, it's like you tell them what you've got and that's it, forgotten about it. And especially at my age, they think, oh well he's old, he's had his life, there's nothing to worry about, you know what I mean? Same way when I go for operations, as I said earlier on, you tell them what you've got and yeah alright then. And then the discharge went after operation, too, too, too early because they need the beds. So then you go home and you're in more pain indoors than you would be in the hospital. I'll give you an example after my operation on my prostate. I was in and out of Croydon Hospital within two weeks because of complications and I went in about three Fridays ago for a CT scan of my heart and from there the GP told me to go to the A&E because I had problems underneath and I had two types of infections and the partner, they'd mutated, the two infections had mutated. So I went to A&E and after four or five hours, the doctor said, right, I'm going to admit you. You've got a terrible, terrible infection. We have to put the drugs intravenously. so that we can get a grab of the disease, but we'll have to keep the in three, about three days. They said, I don't care, do what you have to. They said, we're going to contact the oncologist consultant and see if there's anything else we can do. They contacted the consultant and he said, send them home, send them strong antibiotics and give him enough for two weeks and if it doesn't clear up, tell him to go to his GP. That's not patient care. I know that they're worried about the Covid coming back, I know that they're understaffed and overworked, but the patients are suffering all the time.
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