21 May 2023
Meeting report by Mike Cain
John circulated an invite to all members in Scotland. Some said they would come and some sent apologies. In the end we had an interesting discussion about how the fund that is supposed to exist for Scots to travel to centres in England can be accessed. It seems one exits to allow those on the islands to travel within Scotland for treatment.
It seems common that knowledge of HSP is low, and that different Health Boards have different approaches. There is also a shortage of clinical neurologists.
The English Govt have published their strategy and a couple of trials in SE England and Merseyside are being done for neurology, and presumably the Scottish Govt are waiting to see the result as to locating their centres or using those in England.
We decided that a regular Zoom will be held for all people in Scotland and we will decide if / where physical locations will be as interest demands.
For your interest
In Scotland, there are 4 main regional Clinical Genetics Departments:
- Edinburgh (South East) Clinical Genetics Department.
- Glasgow (West) Clinical Genetics Department.
- Aberdeen (North) Clinical Genetics Department.
- Dundee (East) Clinical Genetics Department.