THE family of a woman suffering from Huntington’s Disease are “still in limbo” over her care.

Darren Clark says health chiefs promised months ago to “look in to” his mum Dorothy’s situation, but says, today they are no further forward.

Darren’s claims come in the same week that Health Secretary Shona Robison launched Scotland’s first local Care Framework for Huntington’s Disease at Ayrshire Central Hospital.

The launch at the Douglas Grant Rehabilitation Centre saw families affected by HD join health and social care staff to welcome NHS Ayrshire & Arran becoming the first board in Scotland to roll out its own localised version of the internationally acclaimed Framework.

The Framework seeks to help ensure families affected by the complex neurological condition are given the best possible care, information and support regardless of where they live throughout the country.

But Darren says, while he hopes the framework is positive for families affected by the condition, for his mum – who has suffered with Huntington’s for more than 25 years – the only ‘solution’ is for her to finally be given the place at a specialised nursing facility she was promised last year.

Darren Clark told the Times: “We are still no further forward. We had been trying to give them some time but it’s been months now. It’s actually unbelievable and so frustrating.”

Darren says North Ayrshire Council’s Social Services department “promised” Dorothy a place at the new state-of-the art facility in Ayr – but then made a u-turn on the decision.

The facility, Wallacetown Gardens has 20 beds, five of which, Darren says are reserved specifically for sufferers of Huntington’s Disease - a debilitating disease which damages nerve cells in the brain and causes brain damage which affects movement, cognition, perception, awareness, thinking, judgement and behaviour.

Darren, 26, says he and his dad James, 56, have had to watch as Dorothy, who is currently being cared for in Woodland View, slowly deteriorated over the years to the point where, now, she needs round the-clock care.

Darren said: “After the last time we raised it with them in November they told us someone from Social Services would visit the home with mum’s nurse, but that hasn’t even happened.

“We are almost six months on and still in the same position.

“It’s great that this new framework is being launched in Irvine for people with Huntington’s and I hope it brings help and solution to the families affected, but it’s frustrating for us because I know what mum’s solution is. It’s hard to feel positive about something like that when I know there is already a solution there for people in mum’s position, but for some reason social services won’t follow through on their promises.”

A spokesperson for North Ayrshire Health and Social Care Partnership said: “We do not comment on the specifics of individual cases, however, we remain in regular contact with the family to discuss an appropriate solution.”

On launching the framework in Irvine this week Cabinet Secretary for Health and Sport, Shona Robison, said: “The Scottish Government provided the Scottish Huntington’s Association with funding and support to develop a National Care Framework for HD and begin the process of rolling it out. The national and international feedback on the work undertaken so far has been extremely positive, and I am delighted to visit the Douglas Grant Rehabilitation Centre today to launch the first localised version.

“Scottish Huntington’s Association, NHS Ayrshire & Arran and local HSCP staff have worked hard to drive improvements in standards of care and support for individuals and their families affected by this disease.”