Respite care model can be replicated across Scotland, says Leuchie House’s retiring CEO Mairi O’Keefe

“Close your eyes, imagine it’s quarter to 12 and you’ve been up since eight o’clock. Two carers came and put you into your wheelchair after a quick wash. The television’s been put on and you’ve had a cup of tea first thing in the morning.

“You’ve become sore and you’re beginning to feel hungry and the carers are late. They come at quarter to one when they should have been here at quarter to 12.

“They ping something in the microwave and they leave it in front of you. They’ve got to go somewhere else. But you can’t feed yourself. You wait till it’s cold then put your face in it to try and eat it.

“Guests have told me that’s what happens to them.”

Mairi O'Keefe is emotional as she retires as chief executive of national respite centre Leuchie House, the place she has run for 15 years and campaigned to keep open as an independent charity since 2011.

As she sits down to speak with Holyrood ahead of the publication of Scotland’s new action plan for neurological conditions, O’Keefe admits there were tears that morning as she said goodbye to guests finishing a week’s respite break at the luxurious 18th century mansion near North Berwick.

Leuchie House provides caring respite breaks for people with long term neurological conditions such as MS and MND, which combines pampering and outings with specialist personalised care such as physiotherapy. Nearly half of the cost is covered by fundraising. 

But while the benefits of early interventions like addressing wheelchair issues, pressure points and social isolation are obvious, it is the ways which the charity boosts self-esteem and empowers guests which O’Keefe has “had to go through unbelievable hoops” to be recognised.

“We have some local authorities and some people within the Scottish Government who think that is a luxury. It is not.

“The group I left today all got on so well, they’ve had a wonderful week with each other, and they’ve all booked to come back in February together. They’ve worked out who is going to bring the Drambuie, the Prosecco. The laughter this morning, apart from me in floods of tears saying cheerio to them was just fantastic.”

O’Keefe hopes the Scottish Government’s imminent neurological action plan can follow in the footsteps of other innovations such as health and social care integration, self-directed support and the carers act, and lead to the ‘Leuchie model’ being adopted elsewhere.

But the pampering of guests in beautiful surroundings has made authorities take pause. One from a local authority told O’Keefe he “would pay for a Renault Clio but not a Rolls Royce”.

But the fact it is a non-clinical environment is one of Leuchie’s strengths, she insists, especially when support for people with neurological conditions focuses on dealing with diagnosis and self-managing in the early phases, instead of the latter stages when people are no longer able to manage their own condition.

Guests, she says, can feel like they still have "something to contribute to society" instead of just being a "disease in a wheelchair".

“A lot of the time it’s palliative. But for our guests to know over the four days they have done 26 miles on a motor-led bike, that’s fantastic wellbeing and gets the circulation going.

“To be able to stand up again after 30 years in a wheelchair on our standing frame is so emotional for them and their carers. We can get a picture of a husband and wife standing together after 30 years, with a glass of wine.”

The fact health boards are to move to three-year accounting will help shift focus away from short term thinking, she hopes.

“How do you measure quality of life? How do you measure what that means to a guest? That self-esteem. They go back home and they just wait for their next break. If I had money to do research I would definitely research that.”

With more collaboration and integration from the public sector, the potential of Leuchie-style places across Scotland is “huge”, she says.

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This would include a greater role for anticipatory care planning and community pharmacy, all while meeting the NHS’s person-centered ambitions to deliver ‘What Matters to Me’ – whether that be a trip to theatre, spending time with loved ones without the responsibility of giving you 24 hour care or simply standing up.

 But O’Keefe is clear that an ambitious action plan would just be the beginning.

“The action plan needs detail. The implementation needs bloody good leadership. And finance, but it will save it in the long run.”

In 2017 Leuchie House provided 6,354 respite days to guests from 26 local authorities. These included 821 early interventions and 700 outings.