• Ayrshire Daily News

HEALTH SECRETARY LAUNCHES SCOTLAND’S FIRST LOCAL CARE FRAMEWORK FOR HUNTINGTON’S DISEASE

NHS Ayrshire & Arran leads way on ground breaking initiative


Health Secretary Shona Robison launched Scotland’s first local Care Framework for Huntington’s Disease (HD) at Ayrshire Central Hospital today (Monday 23 April).

The launch at the Douglas Grant Rehabilitation Centre saw families affected by HD join health and social care staff to welcome NHS Ayrshire & Arran becoming the first board in Scotland to roll out its own localised version of the internationally acclaimed Framework.


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.


Cabinet Secretary for Health and Sport, Shona Robison, said:


“The Scottish Government provided the Scottish Huntington’s Association with funding and support to develop a National Care Framework for HD and begin the process of rolling it out across the country. The national and international feedback on the work undertaken so far has been extremely positive, and I am delighted to visit the Douglas Grant Rehabilitation Centre today to launch the first localised version of the National Framework.


“Scottish Huntington’s Association, NHS Ayrshire & Arran and local HSCP staff have embraced this opportunity and worked hard to drive improvements in standards of care and support for individuals and their families affected by this disease.”


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 Ayrshire & Arran 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 Ayrshire & Arran, Dr Tim Johnston, said:


“It has been a great pleasure to work with local health and social care staff and families to develop Scotland’s first local Care Framework 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.”

Non-Executive Director of NHS Ayrshire & Arran, Bob Martin, said:


“This is an excellent example of how working together in partnership can ensure that people receive the specialised care and support they need. We are proud to lead the way for other Boards in Scotland by launching a local Care Framework for 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 care.hdscotland.org . The NHS Ayrshire & Arran Framework can be viewed within the “Regional Frameworks” section of the site.


About Huntington’s disease (HD)

Huntington’s disease is a complex neurological condition with symptoms that typically begin to develop between the ages of 30 and 50.

HD 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): People with HD can suffer from repetitive involuntary movements resulting in mobility, balance and coordination problems as well as difficulties with speech and swallowing.


Thinking processes (or cognition): People with HD can develop a type of early onset dementia, which affects their ability to process information, make decisions, solve problems, plan and organise.


Mental health: People with HD can also experience a decline in mental health. Depression, anxiety, irritability, obsessive pre-occupations and apathy are amongst the most common mental health problems experienced. Psychosis may also occur.


Symptoms generally progress slowly over a long period time. Those impacted by HD may eventually lose the ability to walk, talk, eat, drink, make decisions or care for themselves - requiring support for most or all of their activities on a 24 hour basis.

It typically takes between 10 and 25 years from a person developing HD symptoms until the end of life.


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.

In around 5-10% of cases HD symptoms develop before the age of 20. This is known as Juvenile Huntington’s disease (JHD).


Although encouraging worldwide research is taking place there is, at present, no cure for HD. However many of its symptoms can be managed with a combination of medication, alternative therapies and appropriate support from specialist services provided by the Scottish Huntington’s Association (SHA) and its health, social care and third sector partners.


About the National Care Framework for Huntington’s Disease (HD)

The National Care Framework seeks to help ensure families affected by the condition are given the best possible care, information and support regardless of where they live in Scotland.  It has been endorsed by NHS Boards, HSCPs, health & social care staff, professional bodies, HD family members, academics and national and international third sector partners (http://care.hdscotland.org/endorsements/)


The Framework - the first of its kind in the world - was developed by a multi-disciplinary expert group lead by the Scottish Huntington’s Association, with funding and support provided by the Scottish Government. The National Framework can be viewed at care.hdscotland.org . The NHS Ayrshire & Arran Framework can be viewed within the “Regional Frameworks” section of the site.


About the Scottish Huntington’s Association (SHA)

Scottish Huntington’s Association is the only charity in the country exclusively dedicated to supporting families impacted by HD.


SHA does this through a team of HD Specialists, a world leading team of Specialist Youth Advisors and a Financial Wellbeing Service. The lifeline services SHA provides make the difference between families coping and not coping.


You can support our SHA’s work by visiting: hdscotland.org

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