"blackouts left untreated"

My daughter began a prolonged period of vertigo, collapses and head pain in January this year. Many of the blackouts occur without warning and this has been life changing, taking away much of her independence. She had a strongly migrainous history and had been diagnosed by Yorkhill with a precursor of migraine at age 5. After cardiological causes for collapse were eliminated she was finally seen by neurology in April this year. Her paediatric notes and test results from Yorkhill had been discarded in the transfer to electronic systems, and the last neurologist to see her at adult neurology here put the wrong diagnosis down in her notes. The consultant initially had a working diagnosis of the latter for my daughter due to the length and frequency of the collapses. At this point she had been seen for a total of 25 minutes by neurology with no collapses caught on EEG.

The waiting list for video EEG is a very long one. In September - 6 months on - she finally got to speak at some length with her named consultant who changed the working diagnosis to basilar migraine. A prescription of a medication which is still unlicensed in the UK, but appears to be the most effective medication for vertigo and associated collapses was written out by the consultant. As it is unlicenced, neurology's own pharmacy has to dispense this. Over one month later we are still waiting for it. The pharmacy role is being shared by colleagues and the system for dispensing such drugs seems to have become a nightmare for neurologists and patients alike. The consultant, who has had to fill in a mountain of paperwork to get this prescribed is currently away and my daughter is still collapsing with no idea of when this potentially life changing medication might be available. We have no-one to contact to speak to about this prescription apart from a rude, obstructive and unhelpful member of staff who sees no problem with my daughter waiting until the consultant comes back and who will not try to pass this on to anyone else for help. In our experience, neurology is in crisis through shortage of doctors. It is entirely unacceptable that neurologists themselves should be the only point of contact over matters like dispensing.