Written evidence submitted by Together for Short Lives [SRF 016]


About Together for Short Lives



Executive summary





  1. Meet the annual £434 million gap in local authority funding for social care for disabled children in England. 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.


  1. Establish a £41 million Disabled Children’s Innovation Fund. An innovation fund model would provide financial backing to organisations delivering ground-breaking support and approaches in early intervention. The Fund would promote whole-family care, with a long-term view to ‘scaling up’ successful programmes into sustainable provision. 


Our written evidence submission


  1. 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 short breaks which can meet their often complex physical, emotional, social and spiritual needs are vitally important to relieve this stress, spend time as a family and do the things that other families do. These are provided by a range of statutory and voluntary sector organisations, including children’s hospice and palliative care charities.


  1. Short breaks for seriously ill children are proven to reduce the risk of their parents experiencing poor mental health. New evidence from Pro Bono Economics, in association with volunteers from Compass Lexecon, has found that 11% of parents of children who need short breaks delivered by children’s palliative care providers would experience a significant reduction in stress if they received them.[2]


  1. This builds on prior research by Julia’s House Children’s Hospice and Bournemouth University which found that most parents (74%) rated short breaks provided by children’s hospices as having a direct, positive effect on their relationship with a partner. The other 26% all spent that time in other restorative ways.


  1. The new research also finds that reduced stress leads to better physical health among parents, leading to fewer GP visits. Demand for GP services declines by 8% as a result of an individual moving out of the most stressed category.


  1. Reduced stress also leads to better mental health among carer parents, which in turn reduces the use of mental health services. Demand for mental health services falls by 49% as an individual moves out of the most stressed category.


  1. Improved work attendance can be measured in reduced number of sick days taken, which leads to increased productivity and tax revenue. 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.


  1. Pro Bono Economics have calculated the total potential benefits to taxpayers from delivering short breaks to all parents of seriously ill children in the UK who need them from children’s palliative care providers could be in the region of £5 million per year. However, they also found that this could be in the range of £3.7 million and £13.8 million depending on assumptions on the impact of short breaks on stress levels.


  1. These savings do not count the huge extra costs that the state incurs result of the breakdown of parental relationships, parents being unable to work and the impact on siblings associated with a lack of access to short breaks.


  1. Existing legislation and government policy is clear that local councils in England should ensure families can access short breaks. The NHS Long Term Plan sets out the need to maintain the mental health of both children and adults. Regulations set out how local councils in England must provide breaks from caring for carers of disabled children.


  1. However, too few local authorities in England plan and fund short breaks for children who need palliative care. The Disabled Children’s Partnership (DCP), which Together for Short Lives is part of, has found that even before the COVID-19 pandemic, the core services that families with disabled children relied on were being squeezed more than ever. Families struggling with the impact of cuts were often only being offered support once they reached crisis point. Only 38% of families of disabled children were getting support from their local council or NHS such as a short break (respite) to help care for their child prior to the lockdown. [3] This is a serious health inequality.


  1. The way in which short breaks for seriously ill children are planned, funded and provided is patchy and unsustainable. For example, average funding for children’s hospices in England from local authorities was cut by 12% between 2018/19 and 2019/20. Children’s hospices received an average of just £53,800 from their local authorities in 2019/20. This represented just 1% of their average charitable expenditure. More widely, there is a £434 million funding gap in social care services for disabled children. As Together for Short Lives has also previously found, there too few professionals with the skills, knowledge and experience needed to provide short breaks.


  1. As the UK experiences the second wave of the COVID-19 pandemic, short breaks are more important than ever. Research by the Martin House Research Centre, Together for Short Lives and the University of Southampton[4] found that, during the first phase of the pandemic:







  1. Parents remain anxious. Many are at breaking point having been forced to provide 24/7 care to their seriously ill child for several months without the support they previously relied on. Many children still cannot access education settings because too few professionals have the guidance they need to manage the infection risks created by undertaking complex aerosol generating procedures (AGPs) in schools and colleges.


  1. It is vital that short break providers are given equitable and sustainable funding now. Only by doing so can we make sure that families are able to access the breaks they urgently need.


  1. We ask that the committee recommends that the government:





November 2020

[1] https://www.togetherforshortlives.org.uk/wp-content/uploads/2020/09/200924-Together-for-Short-Lives-CSR-2020-representation.pdf

[2] Together for Short Lives and Julia’s House Children’s Hospice. October 2020. Give Me A Break. Available from: https://www.togetherforshortlives.org.uk/wp-content/uploads/2020/10/Together-for-Short-Lives-and-Julias-House-Give-Me-a-Break-report-1.pdf

[3] Together for Short Lives and Julia’s House Children’s Hospice. October 2020. Give Me A Break. Available from: https://www.togetherforshortlives.org.uk/wp-content/uploads/2020/10/Together-for-Short-Lives-and-Julias-House-Give-Me-a-Break-report-1.pdf


[4] Martin House Research Centre, Together for Short Lives and the University of Southampton. 2020. Forgotten families: Families feel more isolated than ever under lockdown. Available to download from: https://www.togetherforshortlives.org.uk/forgotten-families-families-feel-more-isolated-than-ever-under-lockdown/