National Care Framework formally launched at Holyrood reception
An event in the Scottish Parliament marking the formal launch of the National Care Framework for Huntington’s Disease has welcomed a £60,000 boost that enables the project to continue into its next phase of local implementation.
The framework – the first of its kind in the world – has been widely welcomed as having the ability to transform care for people with Huntington’s disease. It was developed by a multi-disciplinary expert group led by Scottish Huntington’s Association, with funding and support provided by the Scottish Government.
Cabinet Secretary for Health and Sport, Shona Robison MSP, said: “In 2015 the Scottish Government provided Scottish Huntington’s Association with funding and support to develop a National Care Framework for Huntington’s Disease and begin the process of rolling it out across the country. The national and international feedback on the work undertaken so far has been extremely positive, and I am therefore delighted to announce an additional £60,000 allowing the work to move forward.
“From the outset we were hopeful that the framework could have the potential to be used as a template for other neurological and long term conditions. Widespread feedback from stakeholders representing such conditions appears to have borne this out. We look forward to seeing how this exciting prospect develops and are pleased to continue working with the Scottish Huntington’s Association and others to make this a reality.”
John Eden, Chief Executive of Scottish Huntington’s Association, said: “Our aspiration was to undertake a transformational piece of work that would set out a flexible and accessible model of health and social care for families affected by Huntington’s. Given the extremely complex nature of the disease this was a sizeable challenge. However what has and will continue to sustain us is the energetic engagement of hundreds of Huntington’s family members and professional staff from every imaginable discipline throughout Scotland and beyond.
“Scottish Huntington’s Association owes an enormous debt of gratitude to everyone who participated in the development of the framework. Today’s funding boost is a huge vote of confidence in their work. Together we have created a momentum that will carry this project into its most important phase: improving the way services are delivered to families affected by this appalling condition. We are determined to do exactly that.”
The National Care Framework for Huntington’s Disease has been supported by the Scottish Government, all opposition parties, the National Advisory Committee for Neurological Conditions, NHS Boards, HSCPs, health and social care staff, professional bodies, family members, academics, and national and international third sector partners.
The event in the Scottish Parliament was hosted by Scottish Conservative & Unionist MSP for South of Scotland, Brian Whittle.