Scottish Huntington’s Association will use the money to offer fuel poverty support to families living with inherited neurological disease 

A Scottish charity that supports people affected by Huntington’s disease is taking urgent action to help vulnerable families keep their homes warm without running up bills they can’t afford. 

Scottish Huntington’s Association is launching a specialist energy support service to reach those most at risk. It will also visit hundreds of households across Scotland to help them save money by looking at how they use gas and electricity. 

It comes after the charity’s financial wellbeing officers raised concerns about families living below the poverty line, with rising debt or the fear of losing their homes. 

Now Scottish Huntington’s Association has been granted £203,309 through the Energy Industry Voluntary Redress Scheme, to support 900 people by reducing fuel poverty and raising awareness about energy efficiencies.  

Managed and delivered by Energy Saving Trust, the Energy Redress Scheme collects voluntary payments from energy companies that may have breached rules to make amends for the effects on energy consumers that may have been affected. The priority of the scheme is to support energy consumers in vulnerable situations. 

The award to Scottish Huntington’s Association will fund an energy advisor and specialist training for the charity’s three financial wellbeing officers. It will also enable 700 home visits and 1-2-1 support for families across Scotland. 

“People with Huntington’s disease face incredible challenges every day because of the complexity of symptoms and how it affects the whole family,” said Jo Baldock, senior financial wellbeing officer at Scottish Huntington’s Association. 

“Working lives are cut short, not just for the person with Huntington’s disease but also for the loved ones who care for them. This has a major impact on household income and many of the families we work with are living well below the poverty line, in debt and unable to make ends meet. 

“Because of the nature of Huntington’s disease, families can find it difficult to manage their household finances and navigate the benefits system, never mind negotiate with utility companies over energy use and bill payments. 

“With winter coming, and the continuing challenges of the Covid-19 pandemic, there is real worry about turning on the heating and using electricity. This new specialist support will reduce this added hardship for families who are already trying to cope with a life-limiting, hereditary disease for which there is no cure.” 

In Scotland, there are 1,100 people with Huntington’s disease and up to 6,000 family members are at risk. The neurological condition typically develops between the ages of 30 and 50, and the severe mental and physical symptoms affect thinking processes, personality and control over movement. This can result in the loss of ability walk, talk, eat, drink and make rational decisions. 

To compound the devastating legacy of the disease, young people grow up watching it change their parent, knowing they are at 50% risk of inheriting it themselves.  

Scottish Huntington’s Association is the only charity in the country dedicated exclusively to supporting families impacted by Huntington’s disease. It does this through a nationwide network of HD specialists, a world-leading team of specialist youth advisors and the Financial Wellbeing Service, which was set up in 2015. 

Since then, the Financial Wellbeing Service has supported an average of 450 clients per year, securing nearly £4.5 million in benefits, allowances and financial products, including early access to pension funds. 

The service has also supported families to avoid eviction due to rent arrears, helped young people to access funding to go to college or university, and worked with companies to stop debt recovery action being taken. Since the start of the Covid-19 pandemic, Scottish Huntington’s Association has been responding to a significant spike in demand from people with Huntington’s disease who have been placed on furlough, are facing redundancy, or are struggling with isolation and accessing appropriate health and social care support.