According to a new survey the Scottish Huntington’s Association makes a ‘significant difference’ to the lives of people living with the degenerative neurological condition Huntington’s disease (HD).
A sample of 38 families, who regularly use the services of the charity, were asked a series of questions related to the impact its support had on their daily lives.
Of the ten questions asked the vast majority of responses indicated an over whelming thumbs up for the charity. The questions covered areas such as mental and physical wellbeing, managing money, managing symptoms and remaining independent.
‘It is a huge vote of confidence in our staff and our approach to supporting HD families that we are getting such positive responses from our service users,’ said SHA chief executive, John Eden.
‘I am particularly please that we perform so strongly in the areas where clients have expressed a need for more support and we have actively worked to plug the gap, such as financial planning.’
The SHA is the only charity in the country that supports HD families through a team of specialist nurses, their world leading youth support and a financial wellbeing service.
The sample was picked at random from the 800 plus people they work with every day.
HD is an incurable genetic brain disorder that usually starts between the ages of 35 and 45 years. 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 and mental illness. As it progress those affected will need 24 care. It is also hereditary with each child of those diagnosed at 50% risk developing the disease.
It is estimated there are around 1100 people living with HD in Scotland and about 5000 potentially at risk.
‘We will not be resting on our laurels. Although this shows we’re going in the right direction, there is a lot more work to do to help improve levels of care that people living with HD should be able to rely on and we will continue to work to improve the quality of life for everyone affected by this condition,’ added John.