Galloway HD patients miss out

Dumfries and Galloway is still missing out 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), their annual report singles out Dumfries and Galloway as an area still lacking in adequate HD support services, something that is refuted by NHS Dumfries and Galloway.

Currently the SHA works with 58 per cent 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 per cent of people diagnosed with Huntigtons; vital care and support that vastly improves their quality of life.

“Support that is still being denied to people living with HD in Dumfries and Galloway,” 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.”

A spokesperson for NHS Dumfries and Galloway said: “The Dumfries and Galloway Health and Social Care Partnership is committed to supporting every person who has identified health and social care needs with services tailored to the individual. We work with a range of partners in the third sector who provide specialist care, support and advice that helps people to achieve the outcomes that they want for themselves.“

The Scottish Huntington’s Association 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 partnerships and local authorities, in areas currently lacking dedicated services.

“For those living with HD, the level of care they can expect is a bit of a postcode lottery,” added John Eden.

“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.”