"Wrong Tests"

About: National Hospital for Neurology & Neurosurgery, Queen Square

I was referred to the Autonomic Unit because I have autonomic dysfunction caused by MS. But the Consultant was unwilling to discuss this with me, having jumped to the conclusion that I must have a "hypermobility disorder", which I had never heard of before. I checked on the internet when I got home, and was quite sure I don't have this condition. So I emailed PALS for advice, but didn't receive any answer. Two months later I was notified of a four-day admission to the Day Care Unit for tests. All the tests involved wearing a blood pressure cuff, so I naturally assumed they were trying to check my low blood pressure. But I did wonder why they were only testing that and not doing any tests for my other autonomic symptoms (for example, chronic bowel/bladder dysfunction). So I was very surprised when I later received a medical report stating that I do not suffer from cardiovascular failure or postural tachycardia syndrome (POTS), as I had not been complaining of any heart problems and didn't even know I was being tested for these conditions. Indeed, I had never heard of POTS before receiving the letter. The trouble is they are now planning to discharge me from their Clinic, on the basis of my not having these conditions which I never thought I had in the first place. This means I have had no investigation at all for my actual symptoms and am left totally without help.

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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 referral to the Autonomic Unit at the National Hospital for Neurology and Neurosurgery, UCLH. We are very sorry to hear that you did not recieve a reply from our Patient Advice and Liaison Service (PALS) when you initally made contact, and we would be grateful if you could send further information to PALS via pals@uclh.nhs.uk or by calling 020 3448 3237 so that we can look into this.