Scottish charity secures more than £4million of household income for families living with Huntington’s disease

Scottish Huntington’s Association is marking the fifth year of its Financial Wellbeing Service by revealing it has helped families living with Huntington’s disease to access a total of £4,304,450.43 in unclaimed benefits, allowances and financial products.

The charity’s Financial Wellbeing Service works to alleviate hardship and reduce poverty amongst those living with Huntington’s disease. Severe and complex symptoms often force people with the disease to cut short their working lives, with loved ones also having to give up jobs to meet the growing needs of family members.

This causes financial strain and exposure to greater levels of debt; two-thirds of people affected by Huntington’s disease live on income under the national average, with one in three below the poverty line.

To address this critical need, Scottish Huntington’s Association established the Financial Wellbeing Service in 2015. Since then, in addition to securing more than £4million in income for households, the service has supported families to avoid eviction due to rent arrears, liaised with energy suppliers to stop gas and electricity being cut off, 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, the charity has been responding to a significant spike in demand from family members placed on furlough or facing redundancy. It has also helped people to access bank accounts during lockdown, negotiate re-payment breaks and liaised with utility companies on behalf of families.

Jo Baldock, Senior Financial Wellbeing Officer at Scottish Huntington’s Association, said:

“We’re determined to improve the lives of people with Huntington’s disease and we know that COVID-19 is having a big impact. The biggest concerns for many families are about the financial difficulties they have now or might experience in the future.

“When faced with a change in their financial circumstances, families tell us they find the benefits system to be confusing and complex, which leads to money problems and adds further to the emotional stress at home.

“Without our support, people who are already living with a devastating disease could miss out on what they are entitled to or find themselves facing significant hardship and debt as it becomes more difficult for them to manage their money.”

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 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), thinking processes (or cognition) and mental health. Those impacted by may eventually lose the ability to walk, talk, eat, drink, make rational decisions or care for themselves – requiring support for most or all of their activities on a 24-hour basis.

In Scotland, 1100 people have been diagnosed with the disease, with an estimated 4000 – 6000 at risk of inheriting it from their parents. In around 5-10% of cases, 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 Huntington’s disease. 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.

Scottish Huntington’s Association is the only charity in the country dedicated exclusively to supporting families impacted by Huntington’s disease. SHA does this through a nationwide network of HD Specialists, a world leading team of Specialist Youth Advisors and the Financial Wellbeing Service. The lifeline services SHA provides make the difference between families coping and not coping.

The charity has published a Government-backed National Care Framework for HD which outlines the care and support families should be entitled to receive throughout the country.

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