The National Hospital for Neurology and Neurosurgery 2020-11-09 Person 1 5 0

Very intimidating to be confronted by a panel of 4-5 people when you attend an appointment on your own. No one bothers to introduce anyone or tell you who they are as they sit yawning and looking bored. Openly laughed at me when I said my brain tumour is exactly where I used to hold my mobile phone. Why? The warning in the pack even says phones can cause tumours. Was told 18 months ago my case would be discussed at a management meeting with a view to treatment, this gave me (false) hope– but it never came up again. Consultants would do well to understand the impact of creating false hope. I took the initiative and asked for a low-cost non-invasive treatment and was told no – without a substantive reason. My request and the denial were omitted from my medical record. Consultant claimed I was anxious in his report after I described my first seizure, a pretty terrifying experience. Yet he provided no evidence to support his claim and I have no history of anxiety. He claimed I had not experienced a seizure despite not witnessing it. I have been warned I am at risk of seizures. I’ve been waiting almost a year for them to deal with my complaint and my care has been undermined as a result; I’m supposed to be seen every 6 months but have not been seen for almost a year. Incredibly disappointing experience.