Families fear for future of centre for severely disabled children

Families of severely disabled children fear a respite centre they rely on could face closure.

BBC Scotland News has seen correspondence which shows NHS Lothian is considering closing one of two respite homes in Livingston and Edinburgh due to severe financial pressures.

NHS Lothian said no decision on the future of the specialist residential units for children with complex needs has been made.

They said both were operating under capacity.

Families who use the services at the Sunndach facility in Livingston and Calareidh in Edinburgh contacted BBC's Your Voice calling for all political parties to support keeping both open.

Lynsey and Mark Scott's nine-year-old daughter, Thea, has a rare genetic disorder that sees her spend up to eight days a month at Sunndach.

She is on a ventilator and requires 24-hour care to move and eat.

Even with nursing staff on hand around the clock, NHS rules dictate that one parent must always be present at home, so life is hard for the couple.

Lynsey described Thea as "cheeky" and "joyful" but said the family live in a fragile state of exhaustion due to the high level of care.

"You're constantly watching when the next feed is, when's the next medicines, when's the next intervention that we need to do, and obviously she needs someone pretty much by her all the time," Lynsey said.

"It's like sleeping with your ears open all the time, you're just waiting on something to happen."

"When things are going well with Thea, the plates spin quite nicely but as soon as something changes, it can throw things into turmoil."

Thea's family moved home to be ten minutes' drive from nine-bedded Sunndach.

The purpose-built centre provides long-term residential and respite care, as well as palliative care for the most complex cases.

Breaks provided by the service allow Lynsey and Mark to spend time with their son, Logan, 13, and attend their own medical appointments or get to the shops.

Lynsey fears it would be devastating to her family's life if the facility were to close.

"It would probably spiral us into crisis. It is just what keeps us balanced at the moment, in terms of getting some time with Logan and getting a little bit of time to even just sleep in our own houses without NHS staff coming and going every day," Lynsey said.

Rami Okasha, chief executive of Children's Hospices Across Scotland (Chas) told BBC Scotland News that more support was needed because the number of children who have life-shortening conditions in Scotland has gone up by 40% in the last 10 years.

"Many of the families we look after at Chas are in poverty and many of them have given up their jobs to look after their children, they are full-time carers," Okasha said.

Aris Tyrothoulakis, director for women's & children's services at NHS Lothian said no decisions had been made on any closure of Sunndach or Calareidh but an appraisal of options was due later this year.

"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," Tyrothoulakis said.

The public spending watchdog, the Accounts Commission, said in February that community health finances were at "significant risk" of becoming "financially unsustainable" within the next 24 months.

It warned this could mean difficult choices over redesigning or reducing services.

Mark believes the closure of either of the respite centres would lead to increased costs because children would end up in hospital.

"It's what happens when you take this away from these families, these children then take up hospital beds that they wouldn't need otherwise."

"Some of the children need interventions every day that keep them alive, obviously Thea has a ventilator that is keeping her alive but some children need physical intervention and like resuscitation as a normal procedure every day."

The SNP's Neil Gray said these organisations were "vital for families" and he would write to NHS Lothian to "seek assurances on the ongoing support for the future of these services" and would seek to ensure families are listened to.

Scottish Conservative's Miles Briggs said closure of a facility would leave families without support they need and "impact on NHS services."

Scottish Labour's Jackie Baillie said families must be fully supported and respite provision should be maintained.

Scottish Liberal Democrat's Alex Cole-Hamilton said the facilities provided lifeline care for children and were key to easing hospital pressures so it was "very worrying" they face the prospect of closure.

The Scottish Greens and Reform UK have been contacted but have not yet responded.