Chancellor urged to ‘give families a break’

Rainbow Trust Children’s Charity is one of many palliative care providers calling on the Chancellor for an urgent increase in funding for Short Breaks for families caring for a seriously ill child. This comes as new research, published today, sets out how respite care can reduce stress for families, as well as saving money for the NHS.

Commissioned by Together for Short Lives, and Julia’s House children’s hospices, the key findings include:

    • An estimated 11 per cent of parents of seriously ill children would experience significantly less stress as a result of receiving a break from caring – moving them out of the ‘most stressed’ category of society.
    • This would lead to fewer GP appointments for these parents, and reduced demand for mental health services.
    • For every working parent who experiences a reduction in stress, it is estimated this will reduce the number of days taken off work by around 2-3 days per year.

Rainbow Trust Chief Executive Zillah Bingley, said:

"This research is yet further evidence of the value of Short Breaks for families where a child has a life-threatening or terminal condition. Parents tell us that they feel immense strain caring for their child around the clock, as well as parenting their healthy children and holding down any employment.

"The pressure of lockdown has meant that these breaks are now more important than ever, as we set out in our recent briefing on parental mental health during the COVID-19 pandemic. Having regular opportunities for a break from caring can be essential to parents’ physical and mental health and the avoidance of family breakdown.

"We join the call for Chancellor Rishi Sunak to fill the estimated £434 million funding gap in social care services for disabled children by creating a ring-fenced fund for Local Authorities in the coming Comprehensive Spending Review. Only with increased funding can there be equitable and sustainable provision of this essential respite care."

Although there is a legal obligation for Local Authorities to be providing Short Breaks to families who need them, the reality is that access to a break often depends on where a family lives and their child’s particular condition. Local Authority funding for Short Breaks for children’s palliative care providers across England was cut by an average of 12% in 2019/20. Rainbow Trust finds it increasingly hard to access such funding, and received just 1.2% of its income from Local Authorities in 2018/19, meaning that it must fundraise all other income.

The research was carried out by Pro Bono Economics in association with volunteers from Compass Lexecon. The findings are summarised in today's report.

Rainbow Trust’s own conservative estimate is that its emotional and practical support is saving £3.9 million for the health, care and education system each year. This is based on an update to our original Hidden Savings report in 2017, available here.