Fight on to save MS respite home Leuchie House

Image caption Ann Butterfield and husband Jim, who has MS, have been using Leuchie House for years

Later this year, the only respite care home for people with Multiple Sclerosis in Scotland and the north of England will close.

The MS society, which runs Leuchie House, say not enough people with the condition are getting to use it, but visitors to the centre, in East Lothian, say they cannot live without it.

Jim Butterfield is one of the 10,000 Scots suffering from the neurological condition Multiple Sclerosis.

The debilitating nature of the illness means he needs round the clock support, and, for wife Ann, caring for her husband is more than a full-time job.

She said: "Jim's had MS for almost 20 years and needs an awful lot of care.

"For the last 15 years he's needed everything done for him. His voice has gone, he can't move about at all, he can't move his arms, he can't eat properly, so he needs help with everything."

The Butterfields have been coming to Leuchie House, near North Berwick, for many years. With conventional holidays no longer possible, they've come to rely on its services to get a proper break.

But the MS Society, which runs Leuchie House and several other centres like it around the UK, has decided to pull the plug on residential respite care.

They say most people with MS are not able to to make use of these services, and argue there is now a preference for more individualised care and holiday-style breaks.

But that argument has angered Leuchie House owner, Sir Hew Hamilton-Dalrymple.

The home has been in his family for generations and he leases it to the MS Society for a peppercorn rent.

Sir Hew has been left stunned by the organisation's decision.

He said: "It seems to be the plan to have individual packaged holidays, but the people who come here, the most severely handicapped 25%, have nowhere else to go and therefore are - I hate to say it - being cast aside for the benefit of the other 75% of MS members."

The MS Society did not want us to film inside Leuchie House or interview staff, but, as we arrived at the home, we were approached by a number of guests keen to have their say.

One, said: "It's just pathetic, the decision that's been made. It's a totally unique place and we all just love it."

Another guest added: "There is nowhere else, except maybe old peoples' homes, where we would be sitting with other people with dementia.

Image caption Leuchie house receives hundreds of people with MS and their families every year

"Here, at least, we get good conversation."

But not everyone is against the decision to close Leuchie House.

Alex Stewart, from Aberdeen, has had MS for 13 years and said it was not practical for him to use the service.

"It's just that bit far away for a day visit and, for any length of time, quite expensive," he said.

"I wouldn't, as I understand it, get my wife in the same room as me, and we don't go on holidays apart, so it's not, personally, of any use to me."

The campaign to save Leuchie House has won cross party backing at Holyrood, but ministers say they cannot intervene directly.

The MS Society will wind up its service at the end of November, and said it would continue to seek alternative providers, while working with current users.

But that's offering little comfort to the guests and the 85 members of staff at Leuchie House.

Simon Gillespie, chief executive of the MS Society, told BBC Scotland's Politics Show that Leuchie House had done a great job, but argued that "times have changed".

"We have a moral duty of care and we're exercising that right now," he said.

"All the evidence shows the way that the MS Society sees the future is delivering for people with MS and their carers much more about what they want.

"All the evidence from a very extensive review shows that people want to move away from a style of residential respite care that may have been appropriate 40, 30 or 20 years ago, but people want different things."

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