Families in Argyll and Highland who are living with Huntington’s disease (HD) have welcomed the launch of the Highland Care Framework for HD 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 HD 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 for HD 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 HD care internationally and also for other long term conditions here at home.
Sandy Patience, from Inverness, who has the faulty gene that leads to Huntington’s disease, attended the launch event, which was held in the Centre for Health Science at Raigmore Hospital, Inverness.
“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.”
Oban-based Highlands and Islands MSP Donald Cameron also addressed the launch via video link from the Scottish Parliament.
“When I became an MSP the first motion I tabled was welcoming the National Care Framework for HD and encouraging MSPs from across all parties to get behind it. As a Highlands and Islands MSP I’m particularly pleased that Highland now has its own localised version of the Framework that’s been developed by local families as well as health and social care staff. I’m encouraged to hear there has been interest in the Framework amongst the international HD community, and also here at home in terms of it being a potential model for other neurological conditions. A huge thanks to everyone who has made this Framework a reality, and I wish it every success for the future.”
Claire Wood, Associate Director, 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 & 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.”
Professor Zosia Miedzybrodzka – University of Aberdeen Professor of Medical Genetics, Consultant in Clinical Genetics and HD Clinical Lead for NHS Highland – said:
“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. Having led clinics for families with HD across the North of Scotland for ten years I am aware of how complex needs of these families are. This Framework brings together local information with professional guidance to let health and social care staff know what care is required, and when. The comprehensive and easy to use framework will help staff and families throughout Highland and Argyll & Bute to access available services for all the different aspects of HD care. We are delighted that this new tool will be available to help all NHS Highland HD families to get the best available care and to access world-leading research into the condition.”
John Eden, Chief Executive of Scottish Huntington’s Association, said:
“Family members and a full range of health and social care staff from across NHS Highland have been instrumental in developing this tool. We owe so much to them all for their guidance and support. This is a hugely significant piece of work that, if widely shared and used, has the potential to make a real difference to people’s lives.”
Huntington’s disease is a complex neurological condition with symptoms that typically begin to develop between the ages of 30 and 50. It is hereditary, meaning that it impacts upon entire families over generations rather than on individuals alone. Each child of a person with HD has a 50% chance of inheriting the condition.
As HD progresses it can affect a person’s movement (or motor skills), thinking processes (or cognition) and mental health. Those impacted by HD may eventually lose the ability to walk, talk, eat, drink, make rational decisions or care for themselves – requiring support for most or all of their activities on a 24 hour basis.
Around 1 in 5,000 people in Scotland have HD. 1,100 people have been diagnosed with the disease with an estimated 4,000 – 6,000 at risk of inheriting it from their parents.
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 Highland version can be viewed within the “Regional Frameworks” section of the site.