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Respite breaks reduce stress and lead to fewer visits to the doctor for parents of terminally ill children, a new study has found.

The research estimates that 11 per cent of parents of children who need respite breaks would experience significantly less stress as a result of receiving them – moving them out of the ‘most stressed’ category of society. This would reduce their demand for NHS services and the number of days they need to take off work.

Families at breaking point

Economists from Pro Bono Economics carried conducted the study in association with volunteers from economic consulting firm Compass Lexecon.  In their report they say that the pressure on families caring for a child with complex needs is immense. The burden of caring for a child 24/7 and the knowledge that their 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 things that other families do.

“Without Julia’s House the heart would be ripped out of the care available to families like ours,” says Dan, who gave up his career to become a full-time carer to his daughter Elisa after she was born with cerebral palsy.

"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.”

A vital service

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 the 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.

Call for funding

Together for Short Lives, the charity for terminally ill children, has found that local authority funding for short breaks for children’s hospices was cut by 12 per cent in 2019/20. Isolated during the pandemic without access to many of the services they previously relied on, many families desperately need a break.



Now 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 fund respite breaks for terminally ill children and their families.



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.”

 

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