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I would be really grateful if anyone could read this and reply please.
After being told continually I have 'post viral fatigue' and feeling like my symptoms were getting worse with no support whatsoever, I asked my GP back in October to refer me to a specialist. She told me she would look into it and then told me I was being referred to a specialist called Dr Alistair Miller at the Royal Liverpool Hospital who would assess me and do more tests and 'leave no stone unturned'.
Since then there have been numerous clerical errors by both my GP surgery and the ME clinic in Liverpool, so I am yet to receive an appointment date. I have also now been told by clerical staff that being referred does not necessarily mean you will see a specialist doctor and that they may just put you straight through to a 'therapy' service which involves group information sessions and group pacing sessions. Perhaps I am being pessimistic but this doesn't sound very useful and is a million miles away from the promise made by my GP that I would see an experienced specialist who would be very thorough and would offer more tests and specialist support.
I was given the number of the clinic by my GP to chase up the appointment so I have rang today to ask if they had any idea when I would get an appointment and whether I would see a doctor. I spoke to a receptionist named Lisa who was so abrupt, unhelpful and aggressive in her tone that I actually burst into tears the moment the call ended. I had this idea in my mind that everyone at the clinic would be so understanding and empathetic due to the nature of the clinic, and that finally I would feel I had the support I needed to get through this. I now feel completely disheartened due to the way in which I've been spoken to, the time it's taken, the errors that have been made and the fact that I probably won't even see a doctor and will merely attend group sessions which seem to me to be a token act for the NHS to claim they are doing something when in actual fact they are as good as useless.
I have felt lower than I ever thought it was humanly possible to feel and to be honest I have wanted to end it all. My one hope that was keeping me going was that I would see a specialist and they would understand and they would be able to help in some way.
I am really desperate to hear about other people's experience with this clinic, please please reply if you have been referred or attended the clinic. I'd like to know what people thought of the service, was it useful, what did it involve, did they see a specialist doctor before going to the 'therapy', was the doctor helpful, did it provide any comfort? I can't bare to tell another person I have ME and have them treat me like something they've trodden in, after speaking to the receptionist at the clinic I'm worried this is representative of the whole service.
Thanks to anyone who's read this x
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