"not able to access care"
Posted by Trelissa (as ),
My daughter has a rare and complex syndrome. Part of its presentation in her is chronic migraines, blanking out for long periods at a time, 2 brain cysts, Kiari malformation, low lying brain etc. - she also has other neurological conditions.
Despite all these problems she sees only a general neurologist. I have asked that she sees a specialist in the field, due to the complexity of her problems. I have been told that she cannot as he is outside of the commissioning area of my GPs surgery. I am sure that NHS England had made some form of provision for rare and complex disorders so I started phoning around my area.. I spoke to CCG - basically everyone I could get a number for I phoned. No one in my area knew what to do. I have just been sent around in circles - no one knew what to do in this situation. Meanwhile she does not recieve adequate care as her neurologist has little understanding of the syndrome. It gets worse, I am a patient expert on FACS, I am so used to respect that I was left shocked. My areas of concern were not written in the letter he sent to my GP.
I have been left feeling that the NHS doesn't know what it is doing.