What we do

Our HD Specialists provide vital physical health, mental health, wellbeing support and care co-ordination for all adults within a Huntington’s family – whether they be symptomatic, asymptomatic, at risk or carers. They liaise with, amongst others, occupational therapists, speech therapists, physiotherapists, care homes, dieticians and community mental health teams.

Additional HD Specialist support includes specialist assessment, symptom management, emotional support, help to plan for future care needs and enabling carers to build skills and resilience. Our expertise is invaluable to health and social care professionals who access training and advice from our HD Specialist teams.

Most health and social care staff have no experience of Huntington’s disease at all, and so depend upon the support of our specialist teams.

Our Specialist Youth Advisors provide personalised support, age-appropriate information and resources, and opportunities to build friendships and enjoy respite experiences that would otherwise be impossible. They also provide specialist education, support and guidance to other professionals who work with children and young people who are impacted by Huntington’s disease.

Young people growing up in Huntington’s families see the disease changing their affected parent, with many knowing they have a 50% chance of inheriting the same condition. Many become young carers for siblings or their parents, while others are unable to live with their mum or dad. Some are grieving for loved ones, others are struggling with genetic testing. Huntington’s disease impacts their home lives, education and social lives.

Our Financial Wellbeing Advisors help families to reduce debt and maximise income through access to benefits and financial products. The service’s work includes support with household budgeting, planning for the future by organising power of attorney, and providing specialist energy advice to help cut domestic fuel costs. Since 2015, the service has secured more than £6 million in financial gain for families across Scotland.

Huntington’s disease cuts working lives short, leaving many households we support living below the poverty line

HD Clinical Leads are NHS employed doctors (such as psychiatrists, neurologists or geneticists) designated to providing specialist medical advice, care and treatment to people with Huntington’s. They work with Scottish Huntington’s Association staff and other health and social care colleagues to coordinate care across their local NHS Board area. They run specialist clinics supported and facilitated by our HD Specialist staff, provide home visits to those unable to attend clinic and provide access to Huntington’s disease research programmes. In light of our expertise Scottish Huntington’s Association coordinates and chairs the national network of HD Clinical Leads.