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Families who depend on respite care for severely disabled children are expressing growing concern over the potential closure of one of two specialist centres operated by NHS Lothian. Internal communications obtained by BBC Scotland News reveal that financial difficulties are prompting NHS Lothian to consider shutting either the Sunndach facility in Livingston or the Calareidh unit in Edinburgh. However, NHS Lothian emphasized that no final decision has yet been reached regarding the future of these residential homes designed for children with complex care needs, noting that both locations have been running below capacity.
Among those directly affected are Lynsey and Mark Scott, whose nine-year-old daughter Thea lives with a rare genetic disorder requiring continuous medical attention, including ventilation support. Thea regularly spends time at the Sunndach centre, which offers long-term residential, respite, and palliative care tailored to children with severe disabilities. For the Scotts, this service is essential. Despite round-the-clock nursing, NHS guidelines require that a parent remains at home during Thea’s stays, making the respite facility crucial for the family’s well-being and ability to care for their other child. Lynsey described the daily realities of caring for Thea as exhausting and fraught with constant vigilance over her medication, feeding, and other interventions.
The importance of these respite services is echoed by advocacy groups such as Children’s Hospices Across Scotland (Chas), whose chief executive, Rami Okasha, highlighted a 40% rise over the past decade in children living with life-shortening conditions in Scotland. Okasha stressed that many families are full-time carers facing economic hardship, having often given up employment to support their children’s complex needs. NHS Lothian’s director for women’s and children’s services, Aris Tyrothoulakis, acknowledged that both facilities have operated below 50% capacity since 2019. Although a review process is underway to assess service sustainability, no closures have been decided. He assured that any changes would aim to continue supporting families who rely on these essential provisions.
Meanwhile, concerns about the financial stability of community health services in Scotland have been raised by the public spending watchdog, the Accounts Commission. It warned in February that without changes, health budgets risk becoming unsustainable within two years, potentially forcing difficult choices involving service redesign or reduction. Mark Scott argued that closing either respite centre may paradoxically increase costs, as more children could require hospital care due to the loss of specialised support. Political representatives across parties have weighed in, highlighting the vital role these services play for families and the wider health system. Calls have been made for NHS Lothian to provide assurances about continuing support and for families’ voices to be heard in any forthcoming decisions
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