"I think this is most unfair"

About: Ayr Hospital / Neurology Ninewells Hospital / Neurology

(as the patient),

I have Parkinson's and have a great support team who have helped me through out,

I have side effects from the medicine, such as nightmares, I have had some horrific dreams part of the side effect is acting out my dreams, one night I could be playing football and as I was once a goal keeper my bed side lamp goes flying across the room with me trying to save a goal, the dreams vary to the extreme my wife woke up with my hands round her throat, I have also had many nights when I have been fighting, I can never remember who I fought with but I have hurt my knuckles hitting the wall.

My doctor referred me to The Neurology Department in Ninewells Dundee where I had to keep a diary of my activity during the night.

My doctor recommended that I have a trial drug which has shown remarkable results but that my doctor had to apply to Ayrshire and Arran health board for funding as the drug would cost £8000 a year, this took place in August 2015 and I was told this week that I had been refused funding.

After all the work done by both Ayr and Ninewells hospitals I am very disappointed at this decision and don't know where to turn for the safety of my wife and myself.

I have worked all my life and paid my dues and think this is most unfair.

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Responses

Response from NHS Ayrshire and Arran

I am sorry you’ve been disappointed by our decision. Responding on this forum may compromise your privacy due to the specialist nature of your condition. If you would like to talk to me about this please contact Eunice, our patient feedback manager, on 01563 826222 or by email at eunice.goodwin@aapct.scot.nhs.uk. It would help if we knew your personal details, so we can look into it for you. You may have been provided with the details of an appeals process, which we can also help you with, if necessary.

Best wishes,

Mark S. MacGregor

Associate Medical Director | Consultant Physician & Nephrologist

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Response from Alison Moss, Feedback Manager, NHS Tayside

Dear “worried irvine”

I am sorry to hear of the side effects you have been experiencing as a result of the medicine you are taking for your Parkinson’s and that funding for a trial drug has been refused.

To enable me to look into this matter more fully, I would require to obtain some further information from you. If you would like me to do so, I would be grateful if you could contact me either by telephone on 0800 027 5507 (freephone) or via email to feedback.tayside@nhs.net.

Kind regards.

Alison Moss

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