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Funding for Huntington's disease

Published: 2 Oct 2015 09:00

New projects to improve care and research

The Scottish Government has announced £232,000 of funding for two separate projects to help increase understanding of Huntington's disease(HD) , and to improve care for people living with the condition

£120,000 grant, spread over two years, has been awarded to the Scottish Huntington's Association (SHA) to develop a new national pathway for people with HD, which will potentially also benefit other neurological conditions.

The SHA will appoint a coordinator to work with the Scottish Government, patients, and stakeholders to look at the full pathway for Huntington's patients from clinical through to social care. The final plan will seek to bring consistency to standards of HD care across the country. Once completed, SHA will work with the Scottish Government, NHS boards, social care partnerships and local authorities to implement it.

Because people with neuro-progressive disorders like Huntington's often experience similar problems, it is anticipated that there will be lessons that can be rolled out across other neurological conditions.

An additional £112,000 will be used to establish a three year research fellowship in HD. This will greatly enhance research capacity for the disease in Scotland. The grant, from the Chief Scientist Office, will part-fund the post from 2015/16 to 2017/18, with funding also coming from the RS Macdonald Charitable Trust.

Jamie Hepburn, Minister for Sport, Health Improvement and Mental Health, said:

"The Scottish Government wants to ensure that people living with conditions like Huntington's Disease have access to the best possible care and support. This includes support for their families and carers. These two projects will help us to achieve that aim.

"By working with Scottish Huntington's Association to help them develop this project , we can deliver a better care pathway, based on the experiences of people living with the condition. It's important to note that the lessons learned from this project will have potential knock-on benefits for improving care in other neurological conditions.

"Research into neurological conditions is another important area. The development of new treatments won't be possible unless we keep expanding our knowledge, and the establishment of this new research fellowship will really contribute to that process."

SHA chief executive John Eden said:

"We have ever growing demands on our resources and this money will ensure we are able to deploy these resource more effectively to improve the consistency of support we offer across the country.

"Currently levels of care across the country for those affected with Huntington's Disease varies considerably. A national action plan will improve this, families living with HD should be able to rely on the same services no matter where they live in the country."

Background:

HD is an incurable hereditary progressive condition that causes changes to muscle control, thinking processes and can cause long-term mental health issues. The average age of onset is between 33 and 45 and those living with the condition will require 24 hour care as it progresses into its later stages. Each child of someone diagnosed with HD is at 50 per cent risk of developing the condition themselves.

It is estimated that there are around 1,100 people living with the condition in Scotland with another 5,000 potentially at risk.