"Lack of contact from neurophysiology dept"

About: National Hospital for Neurology & Neurosurgery, Queen Square

On Thurs 11th September I was asked to attend an initial consultation at the surgery of the Professor. My twin brother had been referred two weeks previously by his GP - after displaying a dragging gait and hand tremor. We spent three hours undergoing various tests - administered by one of Prof's assistants. The Professor had spoken to both of us to explain that my brother may have a neurophysiological condition - a Parkinson type syndrome was mentioned. As a twin brother - I was asked to assist in research into a diagnosis. I had a blood test and took part in videoed movement trials. My brother was the chief focus as tests - he was taped upto a EMG machine for over an hour. The assistant explained that the purpose of the tests was to collect data on which to make a provisional diagnosis, and explained that the dept would be asking my brother to come in for a dopmine transport scan 'soon'. I asked him for a timescale for these processes - and was told to expected to call us back before Christmas. We left RHNND at 3pm - happy with our 'first step.' Eight weeks later we have had no word from the Prof, or the team. My brother has phoned the Prof's 'secretary' twice - first time - four weeks ago and the secretary said the Prof was 'on holiday' , two weeks ago we were told 'we have sent you a letter.' I am very concerned about the lack of follow up. I have spoken to my brother on the phone. He sounds depressed. He thinks he may have just 'imagined' these symptoms - maybe he has. But the lack of contact has not helped him. I I am extremely disappointed with the level of care provided. John Devane

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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 brother's recent experience of delays to his treatment at the National Hospital for Neurology & Neurosurgery. 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 so that we can look into this.