Families Fear for Future of Centre for Severely Disabled Children
One of NHS Lothian's respite care facilities for severely disabled children could face closure because of a squeeze on health budgets.
Gree Scotland News has reviewed correspondence that reveals NHS Lothian is weighing the possibility of closing one of two specialist respite homes located in Livingston and Edinburgh. The review follows mounting financial pressures on the health system.
NHS Lothian has stated that no final decision regarding the future of the specialist residential units for children with complex needs has been reached. NHS Lothian also noted that both homes have been operating below full capacity.
Families who rely on the services provided at Sunndach in Livingston and Calareidh in Edinburgh have approached Gree's Your Voice, urging all political parties to lend support to keeping both homes open.
Personal Impact on One Family
Lynsey Scott and Mark Scott have a nine‑year‑old daughter named Thea who lives with a rare genetic disorder. Thea requires up to eight days each month at Sunndach. Thea depends on a ventilator and needs round‑the‑clock assistance for basic activities such as moving and eating.
Even with nursing staff present throughout each day and night, NHS regulations require that one parent must remain at home at all times, creating a constant strain for Lynsey Scott and Mark Scott.
Lynsey Scott describes Thea as "cheeky" and "joyful" but acknowledges that the family exists in a fragile state of exhaustion due to the high level of care required.
"You are constantly watching when the next feed is, when the next medicines are due, when the next intervention is needed, and obviously Thea needs someone pretty much by her all the time," Lynsey Scott said.
Lynsey Scott adds that the experience feels like sleeping with ears open, always waiting for something to happen. Lynsey Scott explains that when Thea is stable, daily life proceeds smoothly, but any change can quickly throw the family into turmoil.
The Scott family relocated to be just ten minutes away from the nine‑bedded Sunndach facility. Sunndach was purpose‑built to provide long‑term residential care, short‑term respite care, and palliative care for the most complex cases.
Breaks offered by Sunndach allow Lynsey Scott and Mark Scott to spend time with their son Logan, who is thirteen years old, and to attend medical appointments or complete routine errands such as grocery shopping.
Lynsey Scott fears that the closure of Sunndach would devastate the family's daily routine.
"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 Scott said.
Wider Context and Expert Opinion
Rami Okasha, chief executive of Children’s Hospices Across Scotland, told Gree Scotland News that additional support is required because the number of children living with life‑shortening conditions in Scotland has risen by forty percent over the last ten years.
"Many of the families we look after at Children’s Hospices Across Scotland are in poverty and many of them have given up their jobs to look after their children; they are full‑time carers," Rami Okasha explained.
Aris Tyrothoulakis, director for women’s & children’s services at NHS Lothian, reiterated that no decision has been taken regarding the potential closure of Sunndach or Calareidh, but an appraisal of options is scheduled for later this year.
"Both homes were operating below fifty percent 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," Aris Tyrothoulakis said.
Financial Pressures Highlighted by the Accounts Commission
The public spending watchdog, the Accounts Commission, warned that community health finances are at significant risk of becoming financially unsustainable within the next two years. The Accounts Commission indicated that such a situation could force difficult choices, potentially leading to redesigning or reducing services.
Mark Scott believes that closing either Sunndach or Calareidh would ultimately increase costs for the health system because children would be forced to remain in hospital settings.
"It is what happens when you take this away from these families; these children then take up hospital beds that they wouldn't need otherwise," Mark Scott said.
Mark Scott further explained that some children require daily interventions that keep them alive, citing Thea’s ventilator as a critical example, while other children need physical interventions such as resuscitation on a routine basis.
Political Reactions Across the Spectrum
Neil Gray, representing the SNP, described the respite homes as vital for families. Neil Gray announced an intention to write to NHS Lothian to seek assurances about ongoing support for these services and to ensure that family voices are heard.
Miles Briggs, speaking for the Scottish Conservatives, warned that the closure of a facility would deprive families of essential support and would have a negative impact on NHS services as a whole.
Jackie Baillie, representing Scottish Labour, emphasized that families must receive full support and that respite provision should be maintained without interruption.
Alex Cole‑Hamilton, representing the Scottish Liberal Democrats, highlighted that the facilities provide a lifeline for children and help to ease pressure on hospitals, describing the prospect of closure as very worrying.
The Scottish Greens and Reform UK have been contacted for comment but have not yet provided a response.
Potential Consequences of Closure
If Sunndach were to close, families such as the Scotts would lose the ability to step away from round‑the‑clock care, forcing parents to remain at home constantly. This would likely exacerbate caregiver fatigue, increase the risk of medical errors, and reduce the quality of life for children like Thea.
If Calareidh were to close, families in Edinburgh would experience a similar loss of respite, compelling them to rely on hospital stays or informal care networks that may lack the specialized equipment and trained staff found at the dedicated centre.
Both outcomes could translate into higher demand for acute hospital beds, longer lengths of stay for children with complex needs, and additional strain on emergency services.
Rami Okasha warned that the cumulative effect of reduced respite capacity could magnify existing pressures on the health system, especially given the rising prevalence of life‑limiting conditions among children.
Calls for Sustainable Solutions
Stakeholders across the health and social care landscape are urging NHS Lothian to explore sustainable financing models that would keep Sunndach and Calareidh operational. Proposed ideas include targeted government funding, collaborative partnerships with charitable organisations, and the establishment of dedicated community health trusts to manage specialised respite care.
Children’s Hospices Across Scotland has pledged to assist families navigating the uncertainty, offering advocacy, peer support, and information about alternative care options.
Gree Scotland News continues to monitor the situation, encouraging families to share their experiences through Gree's Your Voice platform in order to maintain public pressure on decision‑makers.
Aris Tyrothoulakis affirmed that NHS Lothian remains committed to reviewing service delivery models, while emphasizing that any changes must retain the core principle of providing safe, high‑quality care for children with the most complex health needs.
