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Huntington’s disease care gaps still exist

Large areas of Scotland are still missing out completely on vital specialist health and social care support, according to the Scottish Huntington’s Association (SHA).

The only charity in the country dedicated to supporting families living with the degenerative neurological condition, Huntington’s disease (HD), in their annual report singles out Forth Valley, Dumfries and Galloway and the Borders as areas still lacking in adequate HD support services.

Currently the SHA support 58% of people diagnosed with HD, but could provide lifeline help and support to many more if resources were directed to areas of the country that currently lack the services those living with the condition need.

‘Within the areas we work, we deliver services to more than 90% of people diagnosed with HD; vital care and support that vastly improves their quality of life. Support that is still being denied to some areas of the country,’ said SHA chief executive, John Eden.

‘Despite really good working relationships we’ve built up with the Scottish Government and local health and social care partnerships, there is still some way to go before everyone living with HD in Scotland has access to the same standard of care.’

The SHA supports families living with HD through a team of specialist nurses, their world leading youth support and a financial wellbeing service.

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.

The SHA is currently working on a National Care Framework that will help address some of the inconsistencies in service provision, but still needs more buy in from NHS trusts, health and social care partnerships and local authorities, in areas currently lacking dedicated services.

‘For those living with HD, the levels of care they can expect is a bit of postcode lottery. This new framework will go some way to address this, but political will needs to be strengthened if we are to see improvements across all areas. People diagnosed with HD should have the right to decent quality care and support wherever they live. Unfortunately, at the moment, this is still not the case,’ added John.

Other highlights in the charity’s annual report included securing a £210K grant to support a fellowship at the University of Aberdeen, the generation of an extra £400k in benefits for HD families and winning the SCVO Perfect Partnership Award for work with the University of Stirling.

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