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The UKFibromyalgia Forums • View topic - Refused to be seen



Refused to be seen

Anything to do with the NHS or Private Healthcare.

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Refused to be seen

Postby IsaFieryPhoenix » Mon Oct 14, 2013 1:13 pm

I am so terribly frustrated right now. Back in August I went to see my GP because I was having problems with falling asleep (whenever I fall asleep a shock goes through my body and wakes me up, this happens ALL the time right at the moment that I finally doze off). I went to see my GP because I was (and still am) very exhausted. I did not get the rest that I needed at any time, and it was draining me terribly.

My GP told me in August that she was going to refer me to my Rheumatologist, and that he should clear up as to why things like this were happening to me, and if there was anything we could do about this. 2 weeks later, no reply from the hospital. Even a month later no word from the hospital. So I contacted my GP again, told her that I had heard nothing from the Rheumatologist and if the referral was sent. She confirmed that the referral was sent on the 15th of August, and that I should have had it. But she was going to resend it. This was 2 weeks ago now. Today I finally got a letter from the hospital, so I was thrilled, because finally I would hopefully get some help.

But that was not true. In the letter he said that he had seen me twice already, and that I should know by now what I have and what my body is going through. That I have been having insomnia ever since I got diagnosed and before, and that there is nothing he can do. And that he will not see me, nor that he will keep following me, that I should know by now that the symptoms are and what I can do about it. EXCUSE ME?! He told me the last time I saw him, that I was always welcome to come see him if things had gotten worse, and the GP would refer me to him, in case the GP could not do anything for me, he even wrote this in his "report" that he sent me a week later. And now I am being told that I should KNOW what my symptoms are?

Things did not get any better, I am doing exercises as good as I can do them, and whenever I can do them, I even do not sleep even when I am totally exhausted and drained because I am afraid I will not sleep during the night then. But the matter of fact is, that it does not matter if I sleep or not, because I'll be awake most of the night anyway. I am not able to get medication due to my oversensitivity to anti-depressants and sleeping medication. And my usual medication (tramadol , dyclofenac, paracetamol) do not even work at all. And my morphine just takes a small part of the worst off, so that I am just able to cope with it. Since August however, I have been having these shocks that go through my body that keep me awake. Unless I am really that tired that nothing can keep me awake. But he is just telling me it is a "package deal" and that he will not see me. In the mean time , the problem that I have, has not gone away, and I am still having those shocks. But no one is telling me what I could do to help this to get better. So that for once, I can actually sleep without getting these shocks...

So I am hoping that anyone else, who might have these problems too, can help me and give me some advice on this..... Please?

Kind regards,

A very drained and exhausted girl , who is very frustrated with her doctor right now.
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Re: Refused to be seen

Postby SchroedingersCat » Mon Oct 14, 2013 1:20 pm

Make a complaint through your local Patient Liaison Service (PALS), details should be on the website for the hospital where this Rheumatologist is based. That should make him pay some attention to you.
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Re: Refused to be seen

Postby denys » Mon Oct 14, 2013 11:51 pm

That sounds terrible, surely if your doc has re-referred you then you should be seen even if it is by one of his junior colleagues and not the 'big boss' I agree with complaining to PALS and also go back to your GP and ask what she is going to do for you, the least you should get is a referral to a sleep clinic to see why you are waking up with a shock all the time :evil: :evil: :evil: :evil: :evil:
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Re: Refused to be seen

Postby whoami » Tue Oct 15, 2013 11:30 am

I agree with Denys...a trip to a sleep clinic might be in order.
I sleep better now ( at least 2-3 hours straight) that I have been diagnosed with sleep apnea and have a CPAP.

Also ask your Dr if he has considered the meds as a cause of your sleep issue. Mainly what causes you to wake up. Meds can produce some very strange side effects and not always the same with everyone.
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Re: Refused to be seen

Postby helen.whittaker.125 » Tue Oct 15, 2013 8:10 pm

Sorry I'm confused, what were you diagnosed with? I've had insomnia since I was a kid, but it's only in the last 4 months or so I've had shocks through my muscles, there is a thread on it I think here somewhere, it drives me up the wall, I don't so much get them when I'm asleep anymore but evening times when I relax it starts, do you have a wined down period before bed? Mine used to be an hour but now, like everything else it takes me nearer 4 hours to reach the same level of relaxed. It seems I'm one who finds EVERYTHING takes longer than they did a year or 2 ago, even relaxing.
I hope you can get to see someone else, remember you are always entitled to a second opinion even at the level of seeing a different GP. But also I would complain about how you've been treated


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