Families welcome launch of Highland Care Framework for Huntington’s disease
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The launch of new support for people with Huntington's Disease (HD) was held in the Centre for Health Science at Raigmore Hospital, Inverness.
Families in Highland who are living with HD have welcomed the launch of the Highland Care Framework for the disease that seeks to ensure they receive the best possible care and support.
For the first time families and health and social care staff have access to a comprehensive online register of resources designed to assist families throughout the NHS Highland area.
It signposts up-to-date information on all the care and support that’s required for HD families, from being tested for the disease, getting help with symptoms, help with finance and employment issues, help for young people and carers, care at the end of life, getting information about research and much more besides.
The care framework was pioneered by the Scottish Huntington’s Association and has been backed by the Scottish Government.
It is the first of its kind in the world and has been seen as a model for care internationally and also for other long-term conditions in Scotland.
Leah Mackinnon, from Dingwall, attended the launch and said: “So often people think of a disease as affecting one person. However, Huntington’s disease affects entire families from generation to generation. When people find out that HD is in their family it can have a devastating impact, especially when they have no idea where to turn.
"The HD Care Framework stands to change that. Everything you need to know about the disease is all there in one place, helping and guiding families and health and social care staff. We urge everyone who cares about improving support to HD families to get behind the Framework to shape care for everyone who is impacted by this appalling disease.”
Claire Wood, associate director of Allied Health Professionals, NHS Highland said: “It’s fantastic to see families and staff from all across Highland coming together to shape this excellent tool. Whether you are an HD family member of a member of health and social are staff everything you need to know about HD and its treatment is available within this excellent framework.
"I would encourage anyone with an interest in HD to make use of this to shape care and support for the better. I am delighted to formally back the Framework on behalf of NHS Highland and wish it every success.”
One in 5000 people in Scotland have HD. 1100 people have been diagnosed with the disease with an estimated 4000 to 6000 at risk of inheriting it from their parents.
