Last week Shelley attended a Cross Party Group meeting at the Scottish Parliament with our Scottish Advocacy Officer, John Miller. They were joined at the meeting by Mark Chapman from DMD Pathfinders (pictured).
The meeting was Chaired by Jackie Baillie MSP and included an update from Alison Strath (from the Scottish Government’s Pharmacy & Medicines Division) who talked about the Ultra Orphan Pathway in Scotland.
An ultra orphan condition is very rare – defined as affecting less than 1 in 50,000 people, or approximately 100 people in Scotland. The Ultra Orphan Pathway gives patients affected by these conditions access to approved medicines for three years, while information is collected on the benefit of the drug. This data is then used to determine whether NHS Scotland should routinely use the drug. The pathway is currently being used to make Translarna available to those in Scotland living with Duchenne caused by a nonsense mutation and is similar to the Managed Access Agreement that is being used by NICE in England and Wales.
Important discussions also took place around the lack of psychological support for patients and their families when they receive a diagnosis of a neuromuscular condition, and how few wheelchair accessible homes there are in Scotland.
Stoke by Nayland charity golf day
