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 to fill the £537 million disabled children’s social care funding gap in England.
Why short breaks for respite is important for children with life-limiting conditions and their families
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, NHS organisations have a specific role in jointly planning and funding these services with local authorities.
A new report from Together for Short Lives and Julia’s House Children’s Hospice ‘Give Me a Break’, includes new research by Pro Bono Economics, in association with volunteers from Compass Lexecon which sets out the positive impact that short breaks have. The research has estimated that:
- 11 per cent of parents of children who need respite delivered by children’s palliative care providers would experience significantly less stress as a result of receiving breaks – moving them out of the ‘most stressed’ category of society.
- Reduced stress leads to improved physical health among carer parents, which in turn leads to reduced number of GP visits and cost-savings to the health system. Demand for GP services declines by 8 per cent as a result of an individual moving out of the most stressed category.
- Reduced stress leads to improved mental health among carer parents, which in turn reduces the use of mental health services and the associated costs. Demand for mental health services falls by 49 per cent as an individual moves out of the most stressed category.
- For every working parent who experiences a reduction in stress, it is likely that this will reduce the number of days taken off work by around 2-3 days per year.
Together for Short Lives and Julia’s House Children’s Hospice are calling on the government to create a ringfenced £434 million grant for local councils to fill the funding gap in social care services for disabled children. Local authorities would be able to use this money fund short breaks for seriously ill and disabled children equitably and sustainably. Visit our campaign page and find out more here.
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.
Local government funding for social care for disabled children, including short breaks, is unsustainable
As part of its Count Disabled Children In campaign, DCP analysed budgets specific to disabled children across each local authority. Its analysis of budgets revealed that, in 2022/23, 50% of local authorities had a real-terms cut in services for disabled children.
This followed successive cuts to budgets in previous years, with 97% of local authorities cutting one of the budgets for disabled children in 2019/20.
Over the last five years, real term cuts to short breaks services and direct payments have been common.
Families access to short breaks is patchy
Just over a third of parent carers taking part in DCP’s survey to inform its 2023 Failed and Forgotten report indicated that their disabled child received social care support related to their disability or condition.
34% had a social worker and 13% had a family support worker. However, accessing social care proved difficult for families. More than 1 in 4 families reporting that they had been refused a social work assessment on the grounds that their disabled child did not meet the threshold, despite being defined as children in need in the Children and Families Act 2014.
34% of families reported that they had experience delays in the process of assessing their disabled child for short breaks.
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.
The Short Breaks Regulations provide further detail on how local authorities must perform their duty in the Children Act 1989 (“the 1989 Act”) to provide, as part of the range of services they provide for families, breaks from caring for carers of disabled children to support them to continue to care for their children at home and to allow them to do so more effectively. The regulations require local authorities to do three things:
- To ensure that, when making short break provision, they have regard to the needs of different types of carers, not just those who would be unable to continue to provide care without a break.
- To provide a range of breaks, as appropriate, during the day, night, at weekends and during the school holidays.
- To provide parents with a short breaks services statement detailing the range of available breaks and any eligibility criteria attached to them.
In February 2022, we welcomed a government decision to allocate £30 million for additional short breaks for respite for families with disabled children in England. The Department of Education announced that the funding will be available for the following three years to set up more than 10,000 additional respite placements. It forms part of a wider package of reforms that ministers have launched to transform education and opportunities for most disadvantaged.
What would Together for Short Lives like to happen?
Together for Short Lives joins DCP in calling on HM Treasury to meet the annual £573 million funding gap in social care social care for disabled children in England identified by the Disabled Children’s Partnership. Local authorities could use this funding to make sure that short breaks for respite for families of seriously ill children, including those provided by children’s hospices, were sustainable for the long-term.
In taking forward reforms to children’s social care, the Department for Education should also:
- include a specific focus on disabled children and their families in the proposed Family Help arrangements set out in the government-commissioned Independent Review of Children’s Social Care
- build on the lessons from the Short Breaks Innovation Fund
- increase the focus on disability within children’s social work training.