NEARLY a decade ago, she spearheaded the campaign to save Scotland's only dedicated centre for people with multiple sclerosis when its charity funding was withdrawn.

Since then, Mairi O'Keefe has transformed Leuchie House in North Berwick into a charity in its own right which provides a haven not only for individuals living with MS, but 34 other long-term and chronically disabling neurological conditions including Parkinson's, motor neurone disease, cerebral palsy, spinal injuries and stroke.

The chief executive, who at 62 has just announced her decision to retire on November 2, said her vision for Leuchie House has always been "respit-ality": weaving together high-dependency care in a "countryside hotel ambience".

It is the only dedicated respite centre of its kind in Scotland; without it the only alternative would be short stays in hospital or care home beds set aside for respite.

Guests at Leuchie - they are never "patients or clients", she stresses - can stay for four, seven or 11 nights at a time. Although they pay to stay, the fees cover just 54% of the running costs with the other 46% reliant on donations and fundraising.

As well as round-the-clock nursing care and a 'Leuchie MOT' including a high-tech electronic body scan for pressure sores, dental checks, wheelchair repairs, and weight monitoring, guests benefit from good food, hairdressing, beauty treatments, massages, shopping trips, outings to the theatre, garden centre and even micro-light flights - or just the simple pleasure of a shower and some company.

"There is a lot of depression and anger about what has happened to their lives through no fault of their own," said Mrs O'Keefe, who has cared for her own husband for 40 years since he developed Guillain Barre syndrome aged 21, a rare complication of polio myelitis affecting the nerves.

She added: "For us it's about trying to support them and their loved ones through the trauma of it all.

"A good number of our guests - because of their conditions - their relationships have broken down and they're looked after by carers who come in four times a day for 15 minutes and that can be the only people they see all day.

"In some cases the change in the guests is nothing short of a miracle. They can come in dressed unkempt, in clothes that are not clean, they have issues with pressure sores, their hair hasn't been washed in goodness knows how long. A lot of our guests are not showered in the community - they are just bed bathed - so to just have a shower every day is luxury.

"There is one gentleman staying with us at the moment - very gregarious and outgoing, fantastic personality - who now has to stay in bed nearly all the time because his house doorways are too narrow for him to get from the bedroom into the living room in his wheelchair. His wife has her own needs and she can't lift him out of bed.

"We have a 94 year old mother who looks after her 60 year old son.

"We've got one gentleman who lives in a second floor flat in Edinburgh. He's 45 and he gets out twice a year and that's to come to stay in Leuchie House for four days at a time."

Mrs O'Keefe, who grew up in Edinburgh after her parents moved from Eriskay, first arrived at Leuchie House as a manager in 2003. Her career had taken a circuitous path from nursing at Edinburgh's Western General hospital and then at Edinburgh Airport, to becoming the airport's duty manager in charge of retail operations and eventually consultancy work.

The Leuchie House job combined her nursing training, business skills and her own personal experience as a carer.

At the time, Leuchie was funded by the MS Society but in 2010 the charity announced it would withdraw support, sounding the death knell for the centre.

"The Society that should have been looking after the country with the highest rate of MS was actually doing this to people," said Mrs O'Keefe. "I felt it was morally wrong to walk away from these people - I just couldn't do it."

Following a public outcry, lobbying from MSPs and adverse press coverage, the charity backed down and agreed to extend its lease for a few months to give Mrs O'Keefe time to set it up as a new, independent charity. In four months she helped fundraise £500,000 and on July 4 2011 - she choose "independence day" on purpose - the new Leuchie House was launched.

The decision to step down has been emotional, but Mrs O'Keefe will continue to support the charity as an official patron.

She said: "I've been fighting for Leuchie for 18 years. I've got a totally neglected husband, two grown-up sons, my mother is 97 - it's time to step back a bit. But I will miss all my thousands of friends."

She also believes the unique model developed at Leuchie is a blueprint that should be rolled out Scotland-wide.

"It's absolutely no secret that I have said this model is replicable throughout Scotland. There should be a Leuchie in the west, in Aberdeen and in Inverness, because what we do is not just provide respite for people's long-term conditions, there's the early intervention aspect, and we look after the carers too.

"If we had more Leuchie models throughout Scotland we would certainly, eventually, save the NHS and social care an awful lot of money."