Given up

Hi everyone, all you kind people that have supported me. Been away from the computer, had an awful virus for about three weeks.

The situation with my NHS treatment for suspected GCA is this:

The rheumy wrote very grudgingly (after much persuasion by myself) to the vascular surgeon explaining to him that she does not believe that I have GCA, but please do a biopsy anyway, as I am concerned that I may have. And I had an appt issued for 2nd June. All geared up for that and pre-med went ok, (even with my virus). On Friday, my faith in the NHS went out of the window, as a letter from the vascular surgeon himself arrived at my home. This letter stated that I should attend the biopsy on Sunday the 7th June, and it will be his assistant (student?) actually doing the operation. No mention of the 2nd, and no mention of a cancellation.

I felt so cross, I phoned the admin and told them to cancel the lot! I said it is more dangerous going to hospital than dealing with things myself. I know this was wrong, but I do feel very worried about the conduct of the NHS with regard to myself.

Now the virus is dying, and the pains in the temple are still there, but not excessive, worst in the early hours of course, sometimes causing me to awake.

My vision seems fine, and other than the head pains, I seem fine.

Please do not worry about me.

As you can see I am no further forward, and will now not attend on the 2nd, and feel concerned about Bedford Hospital and their communications issues. I have witnessed a friend dying of myeloma, who struggled with handling their mix up with his appts, and it was very upsetting for him. I know they are very understaffed and overloaded.

My current thinking is, to go to A&E in a different town if symptoms take a bad turn, and I am montoring my eyes constantly to give me time.

Surprisingly, the GP and the rheumy both disagree with you all. I am told to stop researching (I have only used your websites) and to stop worrying. They have not mentioned any other reasons for the pains though, so I believe they think that the aging cervical spine and the spondylosis is the cause.

You are have all been very supportive, and I will certainly let you know how it ends up.

Dave B (Old Bedforian)

6 Replies

  • Dave, frustrating as it all is, I would certainly not have cancelled the appointment for 7th June - it is only five days later after all.

  • The assistant will be a registrar - on his way to being a consultant. Not a student.

    As Celtic says - I would have gone on the 7th, 5 days at this stage wouldn't have made much difference.

  • hi Dave

    i a newbee so can be of no real help but you sound as if you are really fed up and low

    i agree why not go back and see if you can get the appointment back

    but good luck

  • Maybe if you explained how concerned and frustrated you were feeling they will understand you cancelled in error. Sometimes saying sorry I've made a mistake goes a long way. You don't want to be travelling to A&E somewhere else.

  • Dave,

    You are clearly worried about yourself and that can't help with any condition you have. It would seem sensible therefore to try to have the biopsy and then, if the result is positive, to have treatment. If the result were to turn out negative then you could relax and stop worrying. Perhaps you could write to the vascular surgeon explaining - (e.g. saying that you weren't well at the time you cancelled?) - and ask whether he/she would still be prepared to do the test. I shouldn't worry about the expertise of the Registrar. Consultants do few, if any, minor operations and the Registrar probably has much more recent experience of carrying out the procedure. I hope everything works out ok for you.

  • "I have witnessed a friend dying of myeloma, who struggled with handling their mix up with his appts, and it was very upsetting for him. I know they are very understaffed and overloaded."

    Thanks for updating, Bedfordian. I was wondering if you were ill or were getting sorted out. I know where you are coming. I was messed around by a hospital in London (charing cross) and they blamed me not contacting to cancel etc. A complete BS. So I know where you are coming from. To me, this is a non starter altogether. Rheumatologist is clearly ignorant and he thinks the only way to shut you up is to give you a biopsy. I think it's good to be positive as a patient but the way your hospital is handling your concern is not good at all. I had a similar story in cardiology in my area (after knowing other cardiology dep else where which was better). you said that you might be thinking of moving in one of your previous posts. Might not be such a bad idea. C**p Rheumatology is not good for anybody. Take care.

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