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 Lanarkshire.
The launch at NHS Lanarkshire’s Kirklands Hospital HQ in Bothwell saw families affected by HD join health and social care staff to welcome Lanarkshire rolling out its own localised version of the Scottish National Care Framework for HD.
The Framework seeks to help families affected by the complex neurological condition to receive the best possible care, information and support regardless of where they live. Families and staff from both north and south Lanarkshire were present at the launch.
Dr Alison Gordon, Consultant Psychiatrist and Lead HD Clinician for NHS Lanarkshire was a key member of the advisory groups that developed the Scottish National and Lanarkshire Frameworks. She said:
“Huntington’s disease is a rare condition with symptoms that can vary widely from person to person. As a result health and social care staff can often be perplexed by the disease, meaning care and support can suffer. The Care Framework is designed to help by guiding health and social care staff and empowering families. It is an extremely comprehensive and easy to use tool that has the ability to transform HD care. It has been a pleasure to be involved in its development and I would encourage anyone with an interest in the condition to make use of it to drive up standards of care and support.”
John Eden, Chief Executive of Scottish Huntington’s Association, said:
“Scottish Huntington’s Association owes an enormous debt of gratitude to everyone involved in developing this Framework, from family members to a full range of health and social care staff from across Lanarkshire. They have added to a momentum that is leading this project to success throughout Scotland and is capturing attention internationally.”
Marianne Hayward, Head of Health at South Lanarkshire Health & Social Care Partnership, said:
“It was a pleasure to have been involved in the launch of the Lanarkshire Care Framework for Huntington’s Disease. It’s great to see Lanarkshire being one of the first to develop its own localised version of the National Framework. 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.”
Cllr Jean Jones, Provost of North Lanarkshire, said:
“This is a great day for the whole of Lanarkshire. I pay tribute to all involved in the development of the Framework and look forward to promoting it to elected members and hearing of its positive impact for Huntington’s disease families in the area.”
Scottish Huntington’s Association recently presented the Framework to the European Huntington’s Disease Network conference in Vienna and has now been invited to present it to the Huntington Study Group Conference in Texas.
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 Lanarkshire Framework can be viewed within the “Regional Frameworks” section of the site.
Back row, L-R: Rhona Vernon Smith (HD Specialist, NHS Lanarkshire), John Eden (Chief Executive, Scottish Huntington’s Association), Marianne Hayward (Health of Health & Social Care, South Lanarkshire HSCP), Linda Lucas (Senior HD Specialist, NHS Lanarkshire)
Front row, L-R: Cllr Jean Jones (Provost, North Lanarkshire), Patricia & Dougie Allen (Lanarkshire HD family).