News & Events

October Meeting of the Cross Party Group on Rare Diseases

Last Reviewed 30/10/2015

By Natalie Frankish

On Tuesday 27 October 2015 the Cross Party Group on Rare Diseases met in the Scottish Parliament. 24 patients and patient group representatives attended the event.

Kathryn Fergusson, Head of Medicines at the Scottish Government, provided an update on access to medicines for rare diseases in Scotland. Kathryn shared the draft scope of the Scottish Medicines Consortium Review which is due to be announced imminently. Kathryn also explained that the New Medicines Fund had been increased to £90million for this year and that the transition from the Individual Patient Treatment Request System to the Peer Approved Clinical System is currently being piloted in Greater Glasgow and Clyde.

There was also discussion on the issue of specialist nursing in rare diseases. At a previous meeting, it was noted that there was significant variation across Scotland, and across condition areas. It was decided that the CPG on Rare Diseases would produce a report that will identify gaps in provision.

The Scottish Government's Named Person Policy was briefly discussed at the meeting. Whilst most in attendance were largely supportive of this policy, it was agreed that rare disease patient groups would benefit from a better understanding of what the policy means in practice and we hope to invite a representative of the Scottish Government to attend the next meeting to provide further information.

Many thanks to all who attended and participated!

The next meeting is expected to take place in late December/early January and the date will be announced in due course.

Please contact Natalie if you have any questions.

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