Advocacy Information Rare Conditions Scottish Parliament

Cabinet Secretary optimistic about diagnosis at SHCA Reception

Alex Neil MSP, Cabinet Secretary for Health and Wellbeing was the main speaker at last night’s Specialised Healthcare Alliance (SHCA) reception at the Scottish Parliament.  Alex Neil was enthusiastic about the development of new technology which, if successful, will make it much easier for GPs and other frontline healthcare professionals to identify if someone might have a rare condition.  I hope that this might offer a real prospect for finding the potentially large numbers of people, especially women, who live with undiagnosed von Willebrand Disease.

Deirdre Evans, Director of National Service Division (NSD) spoke with equal passion about the benefits of partnership working and networks.  She particularly highlighted the importance of National Managed Clinical Networks. When I caught up with her after the speeches she let me know that our stage 2 application for a National Managed Clinical Network for Inherited Bleeding Disorders is scheduled to be discussed at a meeting on Tuesday.  I’m keeping my fingers crossed that we might have some good news not too long after that.

Patricia Osborne, Chief Executive, of the Brittle Bone Society. Gave a fascinating talk about what they had been able to achieve over decades of hard work.  She joined other speakers in looking forward to the work of the oversight group for the Scottish implementation plan for the UK Rare Diseases Strategy which we have reported on before.

John Murray, Director, of the Specialised Healthcare Alliance gave an update on the work of the SHCA and presented the results of a small survey which showed the strengths and weaknesses of the current progress towards achieving the implementation plan.

I also spoke to MND Scotland who are achieving an incredible amount serving a community in Scotland a similar size to the number of people treated for a bleeding disorder each year.  It was very inspiring to hear about all they have achieved and their plans for the future.

The SHCA have produced a more detailed event report.

It was nice to see Liz Carroll, CEO of The Haemophilia Society (UK).
It was nice to see Liz Carroll, CEO of The Haemophilia Society (UK).

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