"not able to access care"

About: NHS England NHS Herts Valleys CCG Watford General Hospital

(as the patient),

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.

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Response from Watford General Hospital

We are sorry to learn that your experience of our hospital was not as expected.

If you would like us to investigate this matter further on your behalf, please contact our colleagues in the Complaints Department on 01923 217866.

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Update posted by Trelissa (the patient)

I probably will contact complaints - thank you. However this does not address the problem. Someone needs to review the 'Strategy for Rare Diseases NHS statement of intent'. There clearly needs to be some training in this area as clearly no one is prepared. In Watford there is a rare disease organisation soon to launch in that area: Tel: 020 8386 9271 they might be able to give you some thoughts!!!!