"I don’t know where I am with anything but it’s getting worse"

About: National Hospital for Neurology & Neurosurgery, Queen Square Queen's Medical Centre / Neurology

(as the patient),

Many years ago I hurt my head and cracked my skull which also affected my back. Years after I was at work and felt poorly as though I was getting the flu so I went to my G. P and they referred me to Queens medical hospital, a doctor saw me for five minutes and told me there’s nothing wrong with me, but they hadn’t even seen my scan. We asked to see the scan I had but they couldn’t find it. I then saw another doctor who was great and knew what was wrong with me, they said I was lucky to see them but then they moved abroad so I was referred to another doctor, and then referred to National Hospital for Neurology and Neurosurgery in London. There they did another scan and muscle biopsy and they seemed to keep on changing their mind about my diagnosis. Then I was transferred back to Queen’s medical where the last doctor I saw was a month ago and they said they don’t know what’s wrong with me but that an operation won’t help me. When I first went to this hospital I walked in, but then I had to use a stick and now I’m in a wheel chair. I don’t know where I am with anything but it’s getting worse and worse and I don’t know what to do.

One thing that I found strange was that the doctor that moved abroad was the only one that asked me to take my trousers off so they could see my legs lock when I try to walk, I don’t know why nobody else did.

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Response from Nottingham University Hospitals NHS Trust

I’m sorry to read that your experience was not as we would wish it to be. It sounds like you’ve been through a lot over a number of years. If you’re unhappy with the diagnosis you have received and would like to discuss this further with your consultant, please do get in touch with us. I would need to know a few more details about your visit to know who to refer this to. If you’d like to, you can contact me directly to discuss further on nuhcommunications@nuh.nhs.uk or call 0115 9249924 ext. 66117.

Kind regards,

Sarah Kennedy.

Patient Experience Officer

Response from National Hospital for Neurology & Neurosurgery, Queen Square

Thank you for taking the time to feed back to us. We are very sorry to hear about your recent experience of the National Hospital For Neurology and Neurosurgery UCLH. We would be grateful if you could contact our Patient Advice and Liaison Service (PALS) via pals@uclh.nhs.uk or by calling 020 3448 3237.