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Published by Scottish Council for Voluntary Organisations

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Virtual wellbeing hub to support people with Huntington’s

 

The Scottish Huntington’s Association will launch the service in June.

A Scottish charity is taking urgent steps to avert a mental health crisis among families living with Huntington’s disease (HD).

The Scottish Huntington’s Association (SHA) has revealed that nearly two-thirds of HD families have concerns about loved ones struggling to cope with the impacts of the Covid-19 pandemic.

SHA is now set to launch a virtual wellbeing hub to support people with HD and their families dealing with financial hardship, social isolation and reduced care support.

Funding for the venture comes from the Scottish Government’s Wellbeing Fund, which supports charities working with people most affected by coronavirus.

SHA chief executive John Eden said: “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.”

A survey carried out by the charity soon after lockdown began revealed that 64% of HD family members said they were worried about the mental health of loved ones, while 60% believed they would become isolated during the pandemic. One in three said they were unsure about how easy it would be to access mental wellbeing support.

Around 1,100 people in Scotland have HD, a degenerative and incurable disease that attacks the brain, causing complex and severe physical and mental symptoms. Since the lockdown began, SHA’s frontline HD Specialist team has conducted more than 1,000 calls with families across Scotland. It has carried out nearly 2,600 referrals to health and social care bodies, and completed more than 200 assessments. Charity staff are also working with young people and disadvantaged households to provide advice and support.

“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. Its virtual hub service will be up and running from the beginning of June.

 

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