scottish huntingtons association SHA support from scottish government

The Scottish Government has awarded a £120,000 grant to the Scottish Huntington’s Association (SHA) to develop a new national care framework for people with Huntington’s Disease (HD).

The SHA will appoint a National Care Framework Lead to work with the Scottish Government, patients, and stakeholders to look at the full framework for Huntington’s Disease 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.

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. By working with Scottish Huntington’s Association to help them develop this project, we can deliver a better care framework, 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.”

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.”