Local staff and families at forefront of work to help people with complex neurodegenerative condition
One of the world’s first local Care Frameworks for Huntington’s Disease (HD) has been launched in Grampian.
The launch in Aberdeen University’s Suttie Centre saw families affected by HD join health and social care staff to welcome Grampian rolling out its own localised version of the internationally acclaimed Scottish National Care Framework for HD.
The Framework seeks to help families affected by the complex neurodegenerative condition to receive the best possible care, information and support regardless of where they live. Families and staff from Moray, Aberdeenshire & Aberdeen City were present at the launch.
Consultant Clinical Geneticist and Huntington’s Disease Lead Clinician for NHS Grampian, Prof. Zosia Miedzybrodzka of University of Aberdeen, was a key member of the advisory groups that developed the Scottish National and Grampian Frameworks. Speaking at the launch Prof. Miedzybrodzka said:
“It is a great pleasure to be part of the team developing this ground breaking Framework. It is designed to guide health and social care staff and empower families impacted by this uncommon, complex condition. The comprehensive and easy to use framework will help staff and families throughout Moray, Aberdeenshire & Aberdeen City to access available services for all the different aspects of HD care. The North of Scotland has amongst the highest recorded prevalence of HD in the world, and was one of the first places to have specialised clinics and healthcare for HD. We are delighted that this new tool will be available to help all NHS Grampian HD families to get the best available care and to access world-leading research into the condition.”
National Care Framework Lead at the Scottish Huntington’s Association, Alistair Haw, said:
“Scottish Huntington’s Association owes an enormous debt of gratitude to everyone throughout Moray, Aberdeenshire & Aberdeen City who participated in the development of the Grampian Framework. They have added to a momentum that will lead this project to success the length and breadth of Scotland and, hopefully, beyond – not just for HD but for other long term and neurological conditions.”
Lewis Macdonald, MSP for North East Scotland, Convener of the Scottish Parliament’s Health & Sport Committee and a former Minister for Health said:
“It was a pleasure to have been involved in the launch of the NHS Grampian Care Framework for Huntington’s Disease today. The National Framework has secured widespread support throughout Scotland and it’s great to see Grampian being one of the first to develop its own localised version. I look forward to working with the Scottish Huntington’s Association and local HD staff to help raise awareness of this terrible condition and improve support for those impacted by it through the use of this ground breaking Framework. I would strongly encourage families and staff to make use of this Framework to help drive up standards of care and support.”
Cllr Louise Laing, councillor for Speyside Glenlivet and member of the Moray Integration Joint Board, is a member of a Huntington’s disease family. Speaking at the launch she said:
“I’m delighted to see the roll out of the Framework here in Grampian. Huntington’s disease is such a complex disorder, and terrifying for families affected. The National Care Framework is designed to offer much needed support not only to families but to health and social care staff too. I look forward to using it and working with the recently launched Moray Huntington’s Disease Support Group and all interested parties throughout the area to help drive up care and support for families.”
Astri Arnesen, President of the European Huntington Association, has also backed the Framework, saying:
“The Framework stands out to me as an invaluable resource on how to deal with HD. It is exactly what we need: not just information about HD but insight on how life with HD can be and how it can be managed. The Framework manages to cover the immense complexity of the disease in a very structured and straightforward way. A wonderful tool – hereby warmly recommended. I hope it will be widely shared and used!”
Scottish Huntington’s Association has been invited to present the Framework to the European Huntington’s Disease Network conference in Vienna later this year.
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 care.hdscotland.org . The Grampian Framework can be viewed within the “Regional Frameworks” section of the site.