UK children’s palliative care charity Together for Short Lives has expressed its disappointment that the government seems to be missing an important opportunity to end the crisis in children’s social care funding.
This follows the government’s announcement on 17 November that ministers will publish a green paper on care and support for older people by summer 2018. With the Local Government Association estimating that local authority children’s services will face a £2billion funding gap by 2020, Together for Short Lives is calling on the government to make new proposals on funding children’s social care too.
Children’s social care for children with life-limiting conditions includes lifeline short breaks (respite) for children and families, providing equipment, transport, counselling and help to adapt children’s homes to accommodate their disability. All are crucial to families of seriously ill children, who provide round the clock care for their children while coming to terms with the fact that their children’s lives are likely to be short.
Short breaks, in particular, offer important opportunities for parent carers to rest and spend time with their children – they can be the only times they get to be just mothers and fathers rather than carers too. For seriously ill children, short breaks also offer a chance to spend time with peers and be independent for a few hours or days in ways which might not otherwise be possible. New UK-wide research conducted by Julia’s House Children’s Hospice and Bournemouth University has found that 64% of divorced or separated parents cited having a child with complex needs as a reason for the breakdown of their relationship. Of those couples, 75% had no access to short breaks at that time. Couples whose relationships were identified as ‘non-distressed’ by the research were found to have received on average 43% more hours of short breaks from a children’s hospice compared to those who were in distressed relationships.
Together for Short Lives’ recently published evidence highlights that only 38% of local authorities commission palliative care for children and young people with life-limiting and life-threatening conditions between the ages of 0 and 25. More than one in five (21%) local authorities do not commission short breaks for children with life-limiting and life-threatening conditions, despite having a legal duty to do so. This figure has declined since 2016, when one in seven (14%) reported that they do not provide these short breaks. Local council funding for voluntary sector children’s palliative care providers fell by 61% between 2014/15 and 2015/16, contributing just 1% of the charitable costs they incur.
Reacting to the news, Barbara Gelb OBE, Chief Executive of Together for Short Lives said:
“Attention to social care for older people is vital, but why is the government failing to address the funding crisis facing children’s social care?”
“There are some wonderful opportunities if we can find a funding solution that works: children with life-limiting conditions who can achieve the outcomes they can reasonably expect from life, like making friends, going to school and even simple things like going the cinema; parent carers who stay resilient, their physical and mental health maintained because of the regular breaks they can access which meet their child’s complex needs. If we fail, we run the risk of leaving the most vulnerable children in our society and their families to reach breaking point, where our already overstretched NHS will be forced to pick up the pieces.”
Together for Short Lives is working with the Local Government Association and others to find ways of helping councils to understand what they are responsible for planning and funding for children with life-limiting conditions. We also provide a free guide for councils and NHS bodies. However, we need government to do its bit: I ask that ministers urgently consider a future funding model for social care to include children and young people too.
Together for Short Lives is here to provide voice and support for the 49,000 children and young people with life-limiting and life-threatening conditions, their families and those that support them. These are the most vulnerable children in society, with weakest voice – a voice which is too often not heard or ignored. They and their families rely heavily on social care.
