Children with life-limiting conditions – and their families – rely on frequent short breaks for respite. The pressure on parents of having a child with a life-limiting condition is immense, so social care is vitally important to relieve this stress, spend time as a family and do the things that other families do. However, too few NHS organisations and local authorities in England plan and fund short breaks for children who need palliative care – and many argue about who is responsible. We call on the UK Government and NHS England to make it clearer to clinical commissioning groups (CCGs) and councils that they are both responsible for commissioning short breaks for children with life-limiting conditions and their families.
Why short breaks for respite is important for children with life-limiting conditions and their families
The pressure on parents of having a child with a life-limiting condition is immense. Most relationships will suffer, with 36% experiencing a breakdown of the family.
64% of mothers and 24% of fathers will need to give up work and this, combined with the extra costs of caring for a seriously ill child, means that many families may live in poverty.
Many brothers and sisters will miss school or experience educational difficulties; many will be bullied or feel isolated at school.
Children with life-limiting conditions – and their families – rely on frequent short breaks for respite to enable them to relieve this stress, spend time as a family and do the things that other families do. Every family’s needs are different: some need overnight, residential short breaks either with or without their child; some need short breaks for only a few hours at a time, provided at home or in hospital. Some will need a mix of both.
Overnight short breaks for children and young people with life-limiting conditions usually include some element of clinical care to meet their often complex health needs, even if it is just an initial clinical assessment. Therefore, NHfS organisations have a specific role in jointly planning and funding these services with local authorities.
As Together for Short Lives own freedom of information (FOI) requests have found (see report linked on the right-hand side of this page), too many clinical commissioning groups (CCGs) and local authorities in England are failing to plan and fund short breaks. 84% of CCGs reported that they commission short breaks for children who need palliative care, which is an increase from our 2016 research, when just 77% commissioned these services. However, 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 commission these short breaks.
New UK-wide research conducted by Julia’s House Children’s Hospice and Bournemouth University has examined the impact that caring for a child with a life-limiting or life-threatening condition has had on parental relationships. 17 children’s hospices from across England and Scotland took part. The research 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
- most parents (74%) rated short breaks provided by children’s hospices as having a direct, positive effect on their relationship with a partner, giving them rare time together as a couple. Others used short breaks to spend time with their other children or just enjoyed time to themselves, regaining some balance in their lives, ultimately benefitting the whole family
- 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.
Evidence gathered by the Local Government Association (LGA) shows that, in 2015/16, local authorities in England overspent their children’s social care budgets by a total of £605 million. The LGA predicts that councils will face a £2billion children’s social care funding shortfall by 2020. As budgets come under increasing pressure, the demand for children’s social care is rising: the government’s own data shows that the number of children in need increased to 394,400 on 31 March 2016 compared to 391,000 on the same day in 2015. This represents an increase of 0.9%.
We are deeply concerned by this new evidence, which indicates that children’s social care in England is financial unsustainable. If it continues to be overlooked within Budget deliberations, the promised social care funding green paper and in the negotiation of local government finance, we are concerned that fewer and fewer children and families who need care and support will be able to access it. Ultimately, our children’s social care system it will become unsafe.
What are the UK’s governments doing to make sure children and families can access short breaks?
A government-commissioned review of funding arrangements for palliative care published in 2011 recognises that “short breaks which provide respite for the carers and families of children requiring palliative care should be funded by local authorities and the NHS under their respective legal short breaks duties”, including the short breaks duty on local authorities in England.
What would Together for Short Lives like to happen?
- We ask the UK government to work with us to review the way in which children’s social care is funded in England.
- We ask the UK government to work with us to issue joint guidance from the secretaries of state for health and education to NHS clinical commissioning groups (CCGs), sustainability and transformation partnerships (STPs) and local authorities. This should remind them that they are all responsible for planning and funding short breaks for these children in their local areas.
- Together for Short Lives is a member of The Disabled Children’s Partnership (DCP), a growing coalition of more than 50 charities who have joined forces, working in partnership with parents, to campaign for better health and social care for disabled children, young people and their families in England. DCP is calling on the government to review the way in which short breaks are provided for disabled children and their families to identify and address national, regional and local funding gaps.