New years Resolution; NO MORE DOCTORS

Filed in the ‘you just couldn’t make this up’ catagory.

I received an appoitment to see a doctor today. I phoned up beforehand to see who he was and why I was seeing him and was told quite clearly that he was a specialist in ME. I was over the moon (stupidly) – could hardly believe there was a doctor who had chosen to specialise in such a disrespected illness.

I had reached the end of the road as far as doctors are concerned but this silly appoitment raised my hopes. (very stupidly)

Turns out the doc is not a specialist in ME. In fact he isn’t even aware of the research developments in ME/CFS/FM. He basically told me the illness was a non-illness and that I just needed aerobic exercsie and CBT. I pointed out I had done the exercsie and now can’t even walk to the end of the road. He said – do it all again and have CBT.

He practically laughed at the notion he was a specialist in ME because who would bother with that? I said I had noticed that no one did. He said that doctors kept referring CFS/ME/FM patients to him and he didnt really know why! Bearing in mind he hasn’t any knowledge of the new research I don’t know why either.

Hoping beyong any hope at this point I tentiviely raised the question of Gaberpentin and whether it would help me with the twitching and jerking. He didn’t know but then he knew so little about the illness that I had to explain that amitripylene is use as pain relief.

I am afraid I cried on the way home. But it has helped in one way. I will not be returning to the doctors. I will not attend any more hospital appoitments and I will simply manage.

Fortunately I am pretty strong willed and I have coped well over the last 10 years – so I will continue to cope. No more doctors. No more let downs.

I am gradually getting more disabled and sicker but I am sure I will find ways to deal with it. After all in the olden days people had to as there was no medicine. As it is clear the NHS makes medieval approaches to medicine look good, I will experiment and see what helps from natural remedies.

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7 responses to “New years Resolution; NO MORE DOCTORS

  1. Steve P in Madison, Wis.

    I suspect there’s something analogous in England, but in the US the agency that accredits health care organizations mandates that they have a “patient advocate” to assist in situations like this. A doctor doesn’t necessarily have to agree to whatever treatment a patient seeks, but he does have to treat a patient with respect. He also needs to acknowledge the limits of his expertise and make a referral elsewhere when dealing with a situation where he’s not competent.

    As I’m sure you know all too well, CFS and its etiology and treatment is controversial, but informed expert opinion no longer simply dismisses it. The US government’s principal public health agency, the Centers for Disease Control, takes it seriously–see http://www.cdc.gov/cfs/general/

  2. I’m with Steve P. Have you tried PALS, the patient advocate and liaison service? My daughter works as an officer in mental health coventry – I can get you details of what PALS could / should be doing for you if you want.
    I know you have a right to be seen at any hospital you request under the NICE guidelines; have you done any internet research that has brought up any specialists in other parts of the country? You could be asked to be referred to them.
    It’s good to know there are internet helps and support available.
    Oh, and have you thought about ebay for wheelchairs?
    love and hugs

  3. So sorry to hear this Shell. I will pray that you can find some natural remedies for treating ME.

  4. Thank you everyone. I am wondering about contacting PALS. I am not that convinced by them. I had to contact them when all my scans and results went missing. It took over two months and plenty of nagging from me and the chiropractic clinic before the stuff was found.
    You need to be pretty robustly healthy to fight the appalling standards of the nhs/

  5. I have been reading your blogs for a very long time and have found them very insperational. There are good dr out there for fybro. My husband and my best friend both have the condition and the dr’s in this neck of the wood are quite supportive. Unfortunately there is no medication that we have found that completely takes away the pain and each day has to be taken at a time. I will pray that will keep your courage. Take care and keep blogging.

  6. It has been suggested I need a diagnosis before I can use PALS! I’m sick of being pushed about and whilst I am quite weak, I am getting by. Like you I’ve had enough, if I’d been living 100 years ago I’d just have had to offer this up, there would have been no fancy diagnosis or treatment. They’ve decided to refer me to an “ME specialist” too, that was 4 months ago and I’ve still not heard anything. The most galling thing is my consultant’s new telephone message which ends with the words “only private patients can leave messages on this service”…..I haven’t got the energy to fight…..

    Every blessing for the New Year, and thanks for the card!
    xxxx

  7. I have “Me” too. And yes , in the US we have agency that accredits health care organizations mandates and they should have a “patient advocate” to assist in situations like this , but the system does not work as designed.

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