Monday, 27 May 2024
Monday, 27 May 2024

Charities call on ministers to give families with terminally ill children a break

NEW research by Pro Bono Economics, in association with volunteers from Compass Lexecon, 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 and improved mental and physical health if they could access them.

The pressure on families caring for a seriously ill child with complex needs is immense. The burden of caring for a child 24/7 and the knowledge that your child will die young can be too much to bear, so having access to regular short breaks is vital to relieve this stress, spend time as a family and do the things that other families do. Yet local authority funding for short breaks for children’s hospices was cut by 12% in 2019/20.

The researchers also found that: 

  • Reduced stress leads to improved physical health among carer parents, which in turn leads to a 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.
  • Improved work attendance: this can be measured in a reduced number of sick days taken, which ultimately leads to increased productivity and additional 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.
  • Short breaks are also likely to have a positive impact on siblings and reduce the risk of parental relationships breaking up.

Jon Franklin, Chief Economist at Pro Bono Economics said:

“Providing short breaks to parent carers helps those parents in a range of very practical ways, providing relief to people who are dealing with some of the most demanding and challenging situations imaginable. But our analysis shows that the benefits may not stop there. Short breaks for parents of seriously ill children could significantly reduce their stress and improve work attendance. That helps alleviate the burden on the healthcare system and increases productivity and tax revenue.”

Existing legislation and government policy are clear that local councils in England should make sure families can access short breaks. However, too many cannot, which is a serious health inequality. The way in which short breaks are planned, funded and provided is patchy and unsustainable. Together for Short Lives has found that local authority funding for children’s hospices was cut by 12% in 2019/20. Isolated during the pandemic without access to many of the services they previously relied on, many families desperately need a break. 

Together for Short Lives and Julia’s House Children’s Hospice are now calling on the government to deliver on the benefits of short breaks by filling the £434million gap in funding for social care services for all disabled children in England and their families by creating an annual ringfenced grant. The charities state that local authorities would be able to use this money fund short breaks for seriously ill and disabled children equitably and sustainably.

Andy Fletcher, CEO of Together for Short Lives said:

“We’re calling on the government to take action and ensure that the short breaks ‘black hole’ is filled so that families can get the respite support they so urgently need. The upcoming Comprehensive Spending Review is a perfect time for Whitehall to grab this issue, and put in place a centrally funded system that ensures that families across the country are getting the support that the government has promised, and they are legally entitled to.”

Martin Edwards, CEO of Julia’s House said:

“What we hear, time and again, from families is that they have to reach a crisis point before they receive any respite care from the local authority. Six out of ten families are receiving no respite breaks at all, and of those who are, three-quarters of them lost those breaks during the lockdown.”

Dan, who gave up his career to become a full-time carer to his daughter Elisa after she was born with cerebral palsy said:

“Without Julia’s House, the heart would be ripped out of the care available to families like ours. Many families would be completely lost, cut adrift without a lifeline. Thank God we live somewhere where this care is not only available but also free. We would never be able to afford care like this. If it hadn’t been for Julia’s House we would have had nowhere to turn.”


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