"Funding and suitable treatment not available for dysautonomia"

About: Aberdeen Royal Infirmary / Neurology (Brain, Spinal and Nerves) Dr Gray's Hospital National Hospital for Neurology & Neurosurgery, Queen Square NHS Grampian

(as the patient),

I live in the far north of Scotland and suffer from dysautonomia. My blood pressure plummets and I faint a lot. I was diagnosed 6 years ago in Elgin. I needed a different specialist and was referred to Aberdeen.

The national expert on dysautonomia is Professor Mathias who is based at the National Hospital for Neurology and Neurosurgery in London. They do tests in London that they don't/won't do in North Scotland. NHS Grampian would not fund my referral to Professor Mathias so I ended up spending £7,000 of my own money to make it happen.

Professor Mathias completed his tests, confirmed dysautonomia diagnosis and said he could help me with further treatment. I was referred back to Aberdeen last month and saw the same doctor I saw originally there. I was kept in bed and they did no tilt table tests. They tried to provoke a faint by marching me on the floor by a metal bed which I didn't think was very safe. The doctor is sure my problem is psychological and won't accept Professor Mathias' diagnosis. I've now been sent down to Glasgow for further tests.

Thankfully there is a charity called Stars that helps people who can't get funding for treatment to be done in Scotland. I believe they do take calls from people trying to access treatment. I am desperate to get treatment as I can't work, I can't drive and I have no quality of life.

It must be costing NHS Scotland a fortune sending me to Aberdeen and then Glasgow. Wouldn't it just be better to pay for me to be treated in the best place?

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Response from Linda Oldroyd, Nurse Consultant, Person Centred Care, NHS Grampian

Thank you for taking the time to post your comments. It sounds like you are having a very difficult time. If you would like us to look into your case further, please contact loldroyd@nhs.net

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful

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