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Groundbreaking care framework for Huntington’s disease launched in Fife

Local staff and families at forefront of work to help people with degenerative neurological condition

One of the world’s first local Care Frameworks for Huntington’s Disease (HD) has been launched in Fife.

The launch at Victoria Hospital saw families affected by HD join health and social care staff to welcome Fife becoming one of the first areas in the country to roll out its own localised version of the internationally acclaimed Scottish National Care Framework for HD.

The Framework seeks to help ensure families affected by the complex neurological condition are given the best possible care, information and support regardless of where they live throughout the country.

Chief Executive of the Scottish Huntington’s Association, John Eden, said:

“Scottish Huntington’s Association owes an enormous debt of gratitude to everyone who participated in the development of the Fife Framework. Today’s launch is a huge vote of confidence in their work. Together they have added to a momentum that will lead this project to success the length and breadth of Scotland and, hopefully, beyond.”

Consultant Psychiatrist and Huntington’s Disease Lead Clinician for NHS Fife, Dr Michael Armanyous, said:

“It has been a great pleasure to work with local health and social care staff and families to develop one of Scotland’s first local Care Frameworks for HD. The Framework is designed to guide health and social care staff and empower families. It is an extremely comprehensive and easy to use tool that I am confident will help to further improve care and support provided to HD families over time.”

Associate Director of Nursing for Fife Health & Social Care Partnership, Nicky Connor, said:

“In Fife we are very fortunate to have a Lead Clinician for HD, dedicated HD Specialists, HD Youth Workers and Specialist Financial Advisers plus a whole team working round about them to deliver the care and support that people with Huntington’s Disease and their families require. In launching the Framework we hope to kick start further improvements to our services and lead the way for providers throughout Scotland to follow. I am delighted to formally launch the HD Care Framework for Fife.”

Shona Robison MSP, Cabinet Secretary for Health & Sport, has said of the Framework:

“I congratulate the Scottish Huntington’s Association for their hard work in developing the National Care Framework. One of the reasons we were keen to fund and support this work was the potential applicability across other conditions. I commend the Scottish Huntington’s Association on the way they have approached this project, collaborating widely across the health and social care landscape. The framework has the potential to transform care for people with Huntington’s disease.”

The HD Care Framework has been supported by the Scottish Government, all parties in the Scottish Parliament, the National Advisory Committee for Neurological Conditions, NHS Boards, Health & Social Care Partnerships, health & social care staff, professional bodies, HD family members, academics and national and international third sector partners. The National Framework can be viewed at . The Fife Framework can be viewed within the “Regional Frameworks” section of the site.

Picture shows:
Back row L-R: Pete Carruthers, Specialist HD Youth Adviser; Nicky Connor, Associate Director of Nursing, Fife Health & Social Care Partnership; Cllr Tim Brett, Chair, Fife HSCP Health & Clinical Care Governance Committee; Dr Michael Armanyous, Consultant Psychiatrist & Lead HD Clinician for NHS Fife; John Eden, CEO, Scottish Huntington’s Association
Front row L-R: Debbie Pitcaithly, Clinical Psychologist; Jillian Foster, Senior HD Specialist; Sue Gray, HD family member; Brian Gray, HD family member; Nicola Johns, HD Specialist; Norma Henderson, HD Resource Worker; Jo Baldock, Senior Financial Wellbeing Officer

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