A service designed to ease financial stress for people living with the degenerative neurological condition, Huntington’s disease (HD), has been given a £340k boost.
Scottish Huntington’s Association (SHA) has secured the cash from a variety of sources to run its Financial Wellbeing Service for another three years.
The financial team works with individuals and families living with HD to advise them on benefits and guide them through the complex world of personal and family financial planning. Over the past four years they have helped HD family secure a total of £2.5 million in extra income, or more than £2500 per family every year.
The SHA is the only charity in the country supporting HD families.
‘The debilitating nature of HD means that people’s working lives are cut short leaving them relying on a variety of benefits. This means as well as having a life shortening condition, 67% of families affected by HD also exist on income below the national average and 33% live below the poverty line,’ said SHA chief executive, John Eden.
‘This service is proving vital in helping families take the stress out of trying to negotiate the benefits system and get people what they are entitled to.’
SHA supports HD families through a national network of specialists, a world leading youth support team as well as its finance arm.
HD is a complex condition with symptoms that typically begin to develop between the ages of 30 and 50. It causes three main groups of symptoms: changes to thinking processes – a type of early onset dementia, loss of muscle control and involuntary movements which lead to loss of speech and swallow along with mental illness. Those impacted by HD may eventually lose the ability to walk, talk, eat, drink or make decisions and will eventually need 24 hour care. It is also hereditary with each child of those diagnosed at 50% risk developing the disease. There is currently no cure.
It is estimated there are around 1100 people living with HD in Scotland and up to 6000 potentially at risk.
‘HD families have enough on their plate without having to worry where their next payment is coming from. But it’s not just about day to day finances, our team can help them prepare for a time when they are no longer able to control their own finances, so when the time comes everything is in order. I’m delighted we will be able to offer this invaluable support again for three more years, and would like to thank all the organisations who have contributed.’
The Financial Wellbeing Service is being supported by the Henry Smith Charity £178,500, Robertson Trust £105,000, RS MacDonald Trust £36,000, Zurich Insurance £15,000 and the Yorkshire and Clydesdale £5,000.
More information available at hdscotland.org