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Thread: Refused permission for referral to Dr Gray by NHS in uk.

  1. #1
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    Default Refused permission for referral to Dr Gray by NHS in uk.

    I have been refused permission by the 'exceptional treatments committee' to be referred under the National Health Service to see Dr Gray. I am distraight. No one in the UK will do anything, they dont want to know, and now this. I have no where left to turn and I do not know what I am going to do. I cant believe this, although I should I guess. 4 years now of living this hell. I cant carry on living like this.

  2. #2
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    Sarah --
    I hear your frustration, and sympathize.
    Just a thought --- have you sent your records and films to Dr. Gray for review?
    Perhaps if you did, and she is agreeable, you could request a referral from her to someone in the UK or Spain. Since these physicians are so specialized, maybe she has come across a doctor who would take your case in your vicinity.
    Her e-mail address is : www.leith001@mc.duke.edu.

    Don't give up - you are a strong and intelligent person. Otherwise you would not have found this site, right? Think positive.
    If she doesn't respond, put the pressure on your committee to determine where you can turn - maybe they have an appeals division so you appeal this decision.
    I'll be praying for you.
    Marianne

  3. #3
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    Hi Marianne
    As soon as I received the email from Dr Weatherby I immediately emailed Linda, she has been so helpful and instrumental in even getting to the referral board! She has been in constant touch with me via email and I have spoken to her on the telephone too.

    Do you know what she said...Oh My GOSH!!!!!! I am so sorry!!!! What could we do to build a stronger case????? Talk to your physician there and see what we could do….don’t give up !!!!! What would it take for me to come there and do it and bring supplies and a couple of people to help?????

    How amazing is this woman! Anyway its not going to be possible because she would have a hospital and facilities matching hers to be able to do the diagnostic testing she needs.

    In the mean time I immediately wrote back to the neuro and asked him to refer me to Professor Pickard at Addenbrookes Hospital, Cambridge, UK. I was surprised that when he emailed me he just said i had been refused and that he would send me a copy of the letter. NOTHING about what he thought we could do next!!

    I then got onto the exceptional treatments board and asked if there is an appeal I can make. They gave me the information saying I need to get my GP to write a letter asking for an appeal. The appeal date is 14th November. I can attend and I can take a representative from the Patients liason team with me. Now I have to wait til tomorrow for GP to ring me and Im sure he will agree to write the letter as he is great. They have said though that there is not a lot of chance.

    I am devastated and cant stop crying, but Im still fighting although for how much longer I dont know.

    One thing I do know is that if I ever get to the states, either under my own steam or via a referral this wont be the last the british system hear of me. If I were an animal there is no way they would allow me to suffer like this. Why on earth do they think I should just take what they say and shut up and go away???

    Thank you for your support Marianne
    Sarah

  4. #4
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    That sounds like Dr. Gray!
    Don't give up hope. Chin up, you'll get thru this.
    Best wishes - Marianne

  5. #5
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    Oh my gosh, Sarah that is such bad news...I really hoped you had a chance to finally get this thing sorted.

    I am so sorry that they did not allow it through. Please push and go to appeal - where would you get a rep from?? Can your doctor go (long shot)?

    Let us know how it goes for you and I hope things work out just fine. Lou x

  6. #6
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    I have spoken to my GP today who is so amazing and has already written, signed and sent the appeal letter! he is going to ask if he can attend with me but doubts he will be allowed.
    In the mean time he has decided to make a new referral to Tauntons hospital. they are small and will not have any expertise but will have neurologists that will be able to refer me throughout the country. It is clear that Dr Weatherby is not prepared to do anything further for me and therefore to get a referral to say Addenbrookes, or anywhere else I would need a neurologists referral.
    I also discussed with him about rocking up to the A and E department of Addenbrookes. My son lives in Cambridge and I could go and stay with him before and after. I feel so ill at the moment and have done for a few weeks that I cant eat, cant use the bathroom, and am so very exhausted with pain that I truly feel I need to be an in patient, if nothing else but to rest. but if they were to do tests whilst I was there then that could be rather detramental to the results because I would obviously be laying down a lot so the results would not be 'true' so to speak, so its a chicken and an egg situation.
    Anyway, in the mean time I really appreciate everyones support and anyone that has any suggestions to specialists in the UK that I can research, discuss my case with and attempt to get a referral, I would be really grateful.
    Thank you
    Sarah

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