Written evidence submitted by Sebastian’s Action Trust

Sebastian’s Action Trust as an organisation that for 18 years has walked alongside seriously-ill children and their families recognises the importance of working together with local authorities, NHS services and other third parties to make sure that our supported children and their families receive the best possible care they need and deserve.

Sebastian’s Action Trust (SAT) is a charity established in 2004 in accordance with the last wishes of our founder, Sebastian Gates, who wanted to reach beyond the limitations of his own lifetime and illness to help others. His desire to create a special place where families facing enormous challenges could come together for memory making, rest and relaxation in private, accessible and exclusive surroundings is the cornerstone upon which our family-focused yet child-centred model has evolved.

We provide emotional, social and practical care for life-limited and life-threatened children and their families. We offer a family respite care model first in its kind at our flagship facility, The Bluebells, together with outreach and specialist support at our second centre, The Woodlands, that is aimed at reducing isolation, providing meaningful support and building resilience to help our beneficiaries face the uncertainties of the future.

Independent evaluation of our services demonstrates that the Trust enables families to cope more effectively, to maintain family stability and to reduce the likelihood of families finding themselves in crisis situations. This, in turn, reduces the likelihood that these families need to turn to social, health and mental health services for state-funded support. SAT interventions therefore create significant savings for the health and social care system in the region of £1.6m per year. It is simply impossible to assess the human and societal value of SAT’s support to individual families and this report does not attempt to make this calculation.

Families with a life-limited child face a unique combination of challenges in addition to the medical needs of the child. Financially, families with a life-limited child are at higher risk of poverty due to the additional costs associated with the disability or condition, as well as a lower earning potential, as one parent usually gives up their job to care for the child. The Trust’s support provided via its finance and welfare services make the very complex system of benefits, grants and health and social care services accessible to parents. It offers families a tailored and individualised service that increases their economic wellbeing.

The Trust’s services lead to direct and indirect savings to health and social care by providing transport, counselling and reducing the need for respite care. In addition, they help to prevent families from hitting rock bottom and needing crisis intervention either from mental health services and/or children’s social services. The need for these services outstrips current provision. Sebastian’s Action Trust improves the quality of life of families with life-limited children on many levels, stabilises families and supports their mental wellbeing. For families living with the unpredictability of a life-limiting condition, the possibility and availability of support is as important as the actual support they receive.

Because of resource and funding constraints, many of the services provided by SAT are limited to families living in a defined geographical area. This contributes to the creation of a postcode lottery in social palliative care, whereby families in some parts of the UK are left with little or no support.

SAT does not receive any statutory, NHS or local authority funding. It does not qualify for the current NHS England Grant to Children’s Hospices, which is limited to clinical care providers. SAT services have only once, through a brief pilot project with Hampshire County Council in 2015, met the locally determined criteria for Short Break Services, for disabled children and their families, which local authorities have a statutory duty to provide. Looking ahead, its high quality services can only be maintained through sustainable and consistent income streams. There is a clear funding gap for social palliative care and increased statutory funding would help secure more comprehensive, sustainable and equitable delivery of these vital services

Sebastian’s Action Trust released the Plugging the Gaps report in 2019 where one of the recommendations was:

Recommendation 1:

More than one in five local authorities do not commission short breaks for children with life-limiting or life-threatening conditions. Clinical Commissioning Groups (CCGs) and local authority commissioners should fulfil their legal duty to fund short breaks for disabled children and their families, including respite care for the carers and families of children requiring palliative care. The creation of Integrated Care Systems should be used as an opportunity to embed and coordinate this duty across health and social care.

As a charity, we continue to support as many families as possible within our limits, but we strongly believe the third sector should be strongly involved in the new Integrated Care Systems to allow every family with a seriously-ill child anywhere in the UK would get the same level of care.

October 2022