Parents plea for respite centres to stay open across Edinburgh and the Lothians

Families across Edinburgh and the Lothians who rely on specialist respite services say the closure of either of two NHS-run homes “cannot be allowed to happen”.

NHS Lothian runs two respite centres for children and young people with complex needs and disabilities – Sunndach in Livingston and Calareidh in Edinburgh.

The purpose-built bungalows provide short breaks, often welcoming children for a night or weekend at a time, allowing parents and carers valuable respite. They also offer longer-term care for some families.

But the future of both sites is under review, with NHS Lothian saying each has been operating at under 50% capacity for some time.

Families fear that could lead to one of the centres closing down and services being merged – a devastating thought for those who rely on them.

‘It’s 24/7’

Sixteen-year-old Murray Scott is a regular visitor to Calareidh. His mum Laura describes him as a “happy and content” boy.

Murray has complex care needs and is non-verbal, meaning his parents have to closely monitor his condition at all times.

His dad, Mark McKenzie, told STV News: “It’s 24/7, that’s no exaggeration. One of the things that happens on quite a regular basis is Murray can be sick, he can vomit quite a lot.”

Murray also has respiratory difficulties that require several machines.

“As parents, you’re constantly listening out for him, you’re constantly looking to see he’s okay,” explained Mark.

For Laura and Mark, respite care can sometimes mean something as simple, and vital as catching up on sleep.

For Murray’s 13-year-old sister Sophie, it offers precious one-to-one time with her parents, or the chance to visit places that may not be accessible for Murray.

Laura says the visits are something Murray enjoys too.

She said: “They’re not just there for medical. He enjoys being there as well. The children that are there at the same time, they enjoy having Murray there.”

‘Every family should have that if they need it’

For Louise Davidson, Sunndach was far more than a service, it became part of the family.

Her son Charlie, who regularly stayed there, died in 2024 aged 17.

“He was amazing,” Louise told STV News. “He had a smile that could light up a room, but only if you deserved it, only if you earned it.”

Louise cared for Charlie as a single parent for the first five years of his life and was initially reluctant to use respite care, worried no one could look after him as she could.

But she says staff at Sunndach quickly earned her trust.

Without that support, she believes much of her family life may have looked very different. She may never have met Charlie’s stepdad Graeme, and Charlie may never have had his younger brother Jack, now ten.

Graeme said respite care offered “Just that chance to switch off, have some fun.”

Staff from Sunndach even attended Louise and Graeme’s wedding, caring for Charlie so the couple could enjoy the day knowing he was in safe hands.

When Charlie reached the end of his life, Louise wanted him to spend his final days at home in Broxburn, something staff helped make possible.

In the days before he died, on Charlie’s birthday, they played bowling in the living room with Jack while his parents sat beside Charlie.

After Charlie died, nurses helped prepare him to leave home, dressing him in his best outfit and doing his hair, a memory Louise still finds deeply moving.

“That’s the side that people don’t see, that’s the reality of this family that comes into your home and does the things you can’t do.

“Every family should have that if they need it.”

Review under way

NHS Lothian says no decisions have been made, but with the review having begun in November 2024, families say the uncertainty has been agonising.

Aris Tyrothoulakis, director for women’s and children’s services at NHS Lothian, said: “Both homes were operating below 50% capacity since 2019, so they are currently being reviewed to ensure services remain sustainable and efficient, while continuing to meet the needs of existing families who rely on this important support.

“Respite care is a service provided to families and carers to provide them with a short break. A child’s healthcare needs are assessed separately by NHS Lothian and met through a different service, which is not the focus of this review.

“We are working closely with families, staff and local authorities, which have a legal duty to provide appropriate support to carers, to explore all future delivery options and consider future service demand.”

‘This is a lifeline’

Mark and other parents have been campaigning to convince NHS Lothian to keep both respite centres open.

He argues the high threshold for accessing the service means only a small number of children currently qualify, and says if homes are under capacity, access should be widened rather than services reduced.

“It just can’t happen,” he said.

“This shouldn’t be seen as a luxury, this is a lifeline for families who really, really need it.”

Laura added: “This is meant to be here to help us and give us the respite that we need, but instead we’re having to fight for it, and that just doesn’t seem fair.”