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Update from the Scottish Cross Party Group on Rare Diseases

The Scottish Cross Party Group on Rare Diseases met on June 10 2015 at the Scottish Parliament. Chaired by Bob Doris MSP, the meeting focused on two key topics in Scotland – Access to Medicines and Specialist Nursing.

Kathryn Fergusson, Head of Medicines at the Scottish Government, provided a detailed update on the recent announcement of a doubling of funds available for new medicines through the New Medicines Fund. The £80million New Medicines Fund is a reinvestment of money from the Pharmaceutical Price Regulation Scheme and is used to fund medicines for orphan, ultra orphan and end of life medicines and represents the commitment of the Scottish Government to ensure that medicines are available to rare disease patients.

Yvonne Hughes, representing the Cystic Fibrosis Trust, provided an update on the new Scottish Medicines Consortium Patient Involvement Network, which has been developed for a greater patient voice in the development of Scottish Medicines Consortium (SMC) processes. Yvonne was nominated by Genetic Alliance UK to represent the voice of the rare disease community and we will be using our newsletter to keep you informed of progress and opportunities to get involved in the work of the SMC.

The issue of Specialist Nursing for rare diseases was raised in light of the recent announcement by the First Minister of £2.5million of extra funding for specialist nursing. A review of specialist nursing by the Scottish Government had been anticipated and it had been hoped that the third sector would have an opportunity to influence the Scottish Government in how these valuable funds should be spent. However, the Scottish Government have advised that funds have been allocated to Scotland’s fourteen territorial Health Boards and that each Board will make a decision as to how this money should be allocated.

Patient groups in attendance found this to be a disappointing decision, there was consensus that decisions of this nature should be looked at on a national level to prevent a postcode lottery of service provision. There were also concerns raised over the difficulties for patient groups to engage with fourteen different health boards, whether patient groups would have to bid against each other and whether patient groups with the ‘greatest numbers’ and ‘loudest voice’ would be more likely to receive funding. It was agreed that the Cross Party Group would take action on this matter and letters to the Cabinet Secretary for Health and Wellbeing, the Chief Nursing Officer and Scotland’s fourteen territorial Health boards will be sent on behalf of the Group. We are grateful to representatives of The Sickle Cell and Thallassemia Support Group and to Marie McGill from the Single Gene Complex Needs Service for their presentations and insight into the value of specialist nursing for rare disease patients.

At the meeting we also heard from Dan Farthing-Sykes, representing Haemophillia Scotland, who gave an excellent presentation on the Penrose Inquiry, the Scottish Public Inquiry into Hepatitis C/HIV acquired infection from NHS treatment in Scotland with blood and blood products.

Finally, the Cross Party Group also had its Annual General Meeting at this meeting. Bob Doris and Malcolm Chisholm were returned as co-conveners and Natalie Frankish, Development Officer at Genetic Alliance UK, was returned as both Secretariat and Treasurer.


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