A Scottish charity is calling for an urgent ‘Right to Respite’ for people living with long-term neurological conditions such as multiple sclerosis, MND or Parkinson’s, and those who care for them.

Leuchie House, the National Respite Centre based in North Berwick, believes a new National Care Service should tackle the postcode lottery that limits the respite options available to Scotland’s unpaid carers, and to make a short break from care a priority action.

As the charity submitted its response to the Scottish Government’s consultation on a National Care Service, which closed today, CEO Mark Bevan said: “If you break your leg it doesn’t matter where you live, it will be fixed but when it comes to short breaks from care there is a genuine lottery in which where people live determines whether they get the break they need for their own and their family’s health. 

The Herald:

“This is an issue which the proposed National Care Service could improve dramatically, for all of our benefit.

“A recent study showed that one in five family carers had not had a single day’s break from providing that care in five years. Respite or a short break from care is a great example of a social care intervention the proposed National Care service can address.

“Respite gives exhausted family members a short break from care, can keep families together and can prevent a difficult set of circumstances from becoming desperate and leading to emergency and very expensive health interventions.”

The Government consultation is based on recommendations published in a report by Derek Feeley, former chief of the NHS in Scotland, in which he specifically recommended a right to respite, a short break for loved ones from providing all of the physical care needs of their partner. 

“There is currently no right to a short break from caring responsibilities, no guarantee that a desperate family doing all that it can, could have that little bit of extra help,” said Mr Bevan.

“We welcome the government’s attention to social care, there is an urgency for this reform now. The current unmet need for social care is doing harm to people in Scotland, leading to poorer health outcomes, poorer economic prospects and devastating the lives of individuals and families.”

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There were an estimated 800,000 unpaid carers before the pandemic, and potentially over 1 million during the pandemic.

The Carers Act requires the need for a ‘break from caring’ to be considered as part of carers’ wider rights to support to meet their eligible needs.  However, only around 3% of carers receive statutory support for breaks from caring.

Mr Bevan added: “Leuchie House proposes a right to short breaks from caring, which will function as a part of the wider social care support system.

"We want it to be one element of new plans to deliver an outcomes-focused approach to care and support which stretches from prevention and early intervention through to acute and specialist provision.”

Leuchie has supported more than 1,000 families over 40,000 nights with specialist care and short breaks in the past 10 years, all for people living with a neurological condition such as multiple sclerosis, MND or Parkinson’s. Scotland has one of the world’s highest incidence of MS, with 15,000 people living with the condition today.

MS is a condition which slowly reduces an individual’s control over their muscles. Most people will use a wheelchair to move around and as the condition progresses some will find it increasingly difficult to speak and even to swallow. The impact on family life is devastating and most partners become physical carers for their loved ones.

Graeme Scougall, 52, from Paisley was diagnosed with MS five years ago and is a regular guest at 18-bed Leuchie, offering him a holiday as well a break from caring for his wife Maureen.

Graeme said: “It wasn’t long after my diagnosis that I had to give up a career in finance and business development. My home isn’t wheelchair accessible and so leaving the house is not really an option anymore. Enjoying a meal out or going on holidays together with my wife are a thing of the past.

“What I don’t want to happen is for my wife to stop living her life to its fullest. It’s important to me that she carries on, and so when a friend recommended Leuchie House, it sounded like a great opportunity to give her a break and looked like it might be a good fit for me. And yet, it remains the only place in Scotland able to offer the specialist care required for people like me.

“My wife and I have come to rely on my respite at Leuchie. It means that once a year, she is able to have a break and visit our two daughters knowing that I am receiving excellent care. And equally, she knows that Leuchie helps me get back to being me.”