"Feel very let down by a service which is meant to..."

About: National Hospital for Neurology & Neurosurgery, Queen Square

Anything else?

I was initially referred to the NHNN Autonomic Unit in Easter 2010, it took 4 months to get an initial appointment with one of the registrars which went well and conservative management was started. It was 10 months before I was able to have the tests carried out. I was meant to be having the tests done as an inpatient because I am a wheelchair user however when I arrived at the hospital:

1) They'd booked me to stay in a hotel

2) They'd only booked me into said hotel for 1 night

3) Despite telling me I only had 2 days worth of tests (and me double checking over the phone that this was the case), it turned out I was actually booked in for 4 days

4) I was told by the doctor that it should only be 4-6 weeks before I get the results

7 weeks after the tests were carried out, I contacted the hospital to find out when my follow up would be and got a letter this morning for an appointment 9 months after the tests. I understand that it is a busy hospital but I think this is appalling and an unacceptable length of time to be left without any proper treatment.

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Response from National Hospital for Neurology & Neurosurgery, Queen Square

We are sorry to hear about that. However, the Autonomic Unit at the National Hospital for Neurology and Neurosurgery is a national referral centre for a wide range of autonomic and allied disorders. It is one of only two centres in the country providing this specialist, multi-disciplinary team clinical care and investigation service. Consequently referral rates are high resulting in longer than ideal waiting times for clinic appointments and investigations. Treatment begins at the first clinic appointment and is refined following detailed investigation.

We are also sorry to hear about the inconvenience you suffered with your accommodation while you were at the hospital. Everyone involved in the admission process strives to make this as smooth as possible for each patient seen at the hospital and respond rapidly and positively to issues raised by patients on the run up to their admissions and we value and encourage our patients' active sharing in the planning process for the best outcome.