Families Fear Closure of Respite Centre for Severely Disabled Children
Families of children with severe disabilities have expressed concern that a vital respite centre they depend on may face closure.
BBC Scotland News has reviewed correspondence indicating that NHS Lothian is contemplating the closure of one of its two respite homes located in Livingston and Edinburgh due to significant financial challenges.
NHS Lothian has stated that no final decision has been made regarding the future of these specialist residential units, which provide care for children with complex needs.
They also noted that both centres are currently operating below capacity.
Families utilizing the services at the Sunndach facility in Livingston and Calareidh in Edinburgh have reached out to BBC's Your Voice, urging all political parties to support keeping both centres operational.
Lynsey and Mark Scott's nine-year-old daughter, Thea, who has a rare genetic disorder, spends up to eight days each month at Sunndach.
Thea requires a ventilator and 24-hour care to assist with movement and eating.
Despite nursing staff being available around the clock, NHS regulations require that one parent must always be present at home, making life challenging for the couple.
"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 relocated to be within a ten-minute drive of the nine-bedded Sunndach centre.
The purpose-built facility offers long-term residential care, respite care, and palliative care for children with the most complex conditions.
Respite breaks provided by the service enable Lynsey and Mark to spend time with their 13-year-old son, Logan, attend medical appointments, or manage daily tasks such as shopping.
"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.
Rising Need for Support
Rami Okasha, chief executive of Children's Hospices Across Scotland (Chas), told BBC Scotland News that the number of children in Scotland with life-shortening conditions has increased by 40% over the past decade.
"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.
NHS Lothian Response
Aris Tyrothoulakis, director for women's and children's services at NHS Lothian, confirmed that no decisions have been made regarding the closure of Sunndach or Calareidh.
An appraisal of options is expected 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.
Financial Challenges
The Accounts Commission, the public spending watchdog, reported in February that community health finances face a "significant risk" of becoming financially unsustainable within the next 24 months.
The report warned that this situation could necessitate difficult decisions regarding the redesign or reduction of services.
Mark Scott believes that closing either respite centre would increase costs overall, as children would require hospital care instead.
"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."
Political Reactions
Neil Gray of the SNP described these organisations as "vital for families" and stated he would write to NHS Lothian to seek assurances about the ongoing support and future of these services, emphasizing the importance of listening to families.
Scottish Conservative Miles Briggs warned that closing a facility would leave families without necessary support and would negatively impact NHS services.
Scottish Labour's Jackie Baillie stressed the need for full support for families and maintaining respite care provision.
Alex Cole-Hamilton of the Scottish Liberal Democrats called the facilities a lifeline for children and key to reducing hospital pressures, describing the potential closures as "very worrying."
The Scottish Greens and Reform UK have been contacted but have not yet responded.
