Scottish Huntington’s Association is taking urgent steps during the COVID-19 pandemic to avert a mental health crisis among families living with Huntington’s disease (HD).
The charity has secured emergency funding from the Scottish Government to launch a virtual wellbeing hub after revealing that nearly two in three HD families have concerns about loved ones struggling to cope.
The funding comes from the Wellbeing Fund, a Scottish Government initiative to support charities working with people most affected by coronavirus.
The fear of increased loneliness, financial hardship and reduced care support is increasing the stress on HD family members, says the charity’s Chief Executive John Eden.
“We’ve been listening to what people with HD and their families say about the impact of COVID-19 on their lives. Direct feedback from families, our staff, combined with our recent survey, has shaped our understanding and we now know many families are really worried about their finances, care arrangements, the extra pressure on carers and mental health.
“As a community, people with HD are resilient – they have to be – and as a charity we also want to show we can step up when the pressure is on. We therefore secured funding from the Scottish Government’s Wellbeing Fund to set up a ‘virtual hub’ that will provide additional help for people who are isolated, give carers more one-to-one support, and be there for people with HD.
“We want to help the HD community to feel more connected through interactive, online sessions and ensure everyone has the information they need about COVID-19 and Huntington’s disease. The new service will be up and running from the beginning of June.”
More than 170 families and individuals from Scotland’s HD community took part in an online and telephone survey carried out by the charity soon after lockdown began.
It found that 64% of respondents are worried about the mental health of a loved one with HD and the impact on other family members. Over 60% believe they will become more isolated during the pandemic, and one in three is unsure about how easy it would be to access appropriate mental wellbeing support. Nearly 50% of family members say that the person with HD in their household is at risk of police action because they don’t understand social distancing rules.
Changes in household circumstances are adding to the stress – 64% of families are worried about the financial impact of COVID-19 and one in three fears not being able to meet essential costs like food and fuel. A reduction in agency support means that 40% of families are also taking on additional caring responsibilities.
Around 1100 people in Scotland have HD, a degenerative and incurable disease that attacks the brain, causing complex and severe physical and mental symptoms. Its devastating toll on families is compounded by the reality that every child of an HD parent has a 50% likelihood of inheriting the faulty gene, meaning they too will go on to develop the condition. Today, up to 6000 people in Scotland are believed to be at risk.
Everyone and anyone whose life is affected by HD can receive support from SHA, which delivers life-changing services through its network of HD Specialists, youth advisors and financial wellbeing officers.
Since the lockdown began, SHA’s frontline HD Specialist team has been in more than 1000 calls with families across Scotland. It has carried out nearly 2600 referrals to health and social care bodies, and completed more than 200 assessments.
SHAYP, the SHA youth team is providing 1-2-1 and group support for young people, including those who look after loved ones or are unable to visit parents in care homes, and the financial wellbeing team is helping families facing changes in circumstances and household hardship.
“HD families are relying on us more than ever right now and every SHA service is being stretched at a time when we’ve had to cancel or postpone all SHA and volunteer-led fundraising events,” said Mr Eden.
“However, we’re committed to being here for every family, regardless of the current challenges we face, and we hope that the people of Scotland will help us to support our HD community.”
The charity has launched a coronavirus crisis appeal, Stay Home and Step Up, to ensure no family is left to cope alone during the pandemic. To find out more about how to get involved, and to view the full findings of the HD Families Survey, visit www.hdscotland.org