A welcome in the hillside

An 18th century classical mansion set in rolling hills some 50 miles east of Edinburgh and near the bracing East Lothian coastline sounds like the perfect retreat. And Leuchie House provides exactly that for many people with neurological conditions, including multiple sclerosis (MS), Parkinson’s, motor neurone disease and cerebral palsy – as well as for their carers.

 

For almost 30 years the grand house was used as a respite holiday home for people with MS. The home was run by Servite nuns until the MS Society took over in 1998 but in 2010 the society withdrew its funding. The then-manager, Mairi O’Keefe, launched a Save Leuchie Campaign and after donations poured in, Leuchie House reopened its doors in the summer of 2011 as an independent charity.

 

Physiotherapy is a key service offered to guests at Leuchie, and lead physio Moni Robson explains that the guests’ residential stay (from four to 11 days) allows her team to address many ongoing problems. She says the treatment of people with long-term neurological conditions is ‘very, very, patchy’ across the UK. 

 

Ms Robson attributes this mainly to different funding levels but also points out that the scope for introducing successful exercise programmes is limited for people with long-term conditions. ‘But the scope to prevent deterioration is enormous and that is why we try to be preventive and anticipatory in our measures. We don’t just see our guests at one moment in time. We see them in the morning, during the day, in the evening, and over a few days.’

 

Leuchie has 23 guest beds and three carers’ rooms. In 2015 it delivered a total of around 6,200 respite days. Guests at Leuchie are given a health ‘MOT’, with particular emphasis on their wheelchair use (see ‘Wheelchair checks’ below). 

 

But Ms Robson and her team focus on a number of care issues, especially those elements that can be replicated when guests return home.

 

‘We can look at manual handling and promote best practice by doing the right thing while the guests are here and if their carer is here we can show them and supervise them,’ Ms Robson says. 

 

‘If the guest or carer feels they need more equipment we will refer on and make community occupational therapists aware of the problem.’

 

The physio team consists of two full-time physios and one physio assistant, as well as students on placement and volunteers. They will address night-time positioning, introduce home exercise programmes if the guest is keen, and work with nurses, nutritionists and other clinicians to provide a holistic treatment service.

 

‘Thankfully we have the flexibility to spend an hour with a guest to achieve the ideal sitting position if we need to,’ Ms Robson says. ‘That way the guest feels the benefit and can take it away with them. Our physiotherapy is really wide-ranging and we link with professionals here and outside where needed. ‘We can save the NHS money and improve the guests’ quality of life.’

It costs £1.6 million to run Leuchie House each year, with 45 per cent of the running costs coming from donations and grants. Guests must pay the costs of their stay, which, as well as the physiotherapy, includes 24-hour specialist nursing care and full board. Some local authorities will contribute to the fees and a number of charities and organisations provide grants to help with respite costs.

 

Guests come from across Scotland as well as England and even the continent. The physiotherapy for visitors to Leuchie House is not mandatory but Ms Robson says guests are gently encouraged to take part if at all possible. ‘We can provide a break for the guests, and their carers and partners and it’s very clear that without Leuchie that wouldn’t happen,’ she says. fl

‘My wife was very impressed by the whole experience and felt relief that I was able to have a break at the same time. We both benefited very much from the whole week. She did mention especially the help from the physiotherapists and tips to bring home with her.’ 

 

‘I’d recommend Leuchie because of the level of care, competence and general attitude and friendliness of everyone around, as well as the opportunities available.’

 

‘New friendships made, existing friendships strengthened. Care here is above and beyond.’ 

 

As part of the ‘Leuchie MOT’ staff check that each guest’s wheelchair is the correct size and provides the support they need. Healthcare Improvement Scotland recommends that no one who is at risk of developing pressure ulcers should sit for more than two hours without changing position.

 

Moni Robson and her team at Leuchie House were concerned that many of their guests did not have the kind of adjustable chair they needed to let them change position regularly. And often they had no one to help them out of their wheelchair. The Leuchie House team asked 100 guests who could not get out of their wheelchair without help whether they moved from their chair each day, and if not, why not.

 

They found that almost three-quarters (71 per cent) spent more than seven hours in their wheelchair each day, of whom 43 per cent said they typically never moved out of their wheelchair all day. This was mainly because no one was around to move them or there was no alternative suitable chair.

 

Ms Robson says the study suggests there could be thousands of people in Scotland risking serious health problems, including restricted breathing, digestive problems and joint stiffness, due to a lack of movement. 

 

A tilt-in-space wheelchair that allows users to shift their body weight within the chair may be one solution but the Leuchie survey found 65 per cent of wheelchair users don’t have these chairs. Ms Robson says many wheelchair users who have brief visits from carers face a tough choice of being moved to a more comfortable chair but then being stuck until the carer returns, or retaining more independence but being unable to leave their wheelchair all day.