Funding crisis leaves exhausted families without vital respite care
When seven-year-old Elisa McEvoy was diagnosed with cerebral palsy, her parents’ world came crashing down.
Elisa was born with brain damage and has complex needs, which means she needs to be cared for 24/7.
She is deaf, struggles to swallow and has central and obstructive apnoea, which affects her breathing.
Shortly after her diagnosis dad Dan gave up his job five years ago to care for Elisa full-time but it was an isolating time. The family, who live in Bournemouth, reached out to their local hospice for help.
Since then Julia’s House in Dorset has become a huge part of all of their lives – providing respite care on site and at home.
As Dan, 44, says: “When you give up work to care for your child, you become so isolated, it’s like falling out of society. I was trapped in a cycle of exhaustion and anxiety.
“Sleep is virtually impossible. You go to bed every night not knowing if your child will wake up in the morning.
“When your child has a life-threatening condition there is no peace of mind, no break from the sickening worry.”
Now Dan is one of those backing a campaign by charity, Together for Short Lives, calling on the government to create a ring-fenced £434m grant for local councils to fill the funding gap in social care services for disabled children.
It comes after local authority funding for children’s hospices was cut by 12% in 2019/20 – putting many of them at serious risk of closure.
The charity is also urging the Government to create a £41m Disabled Children’s Innovation Fund, which would provide financial backing to organisations delivering support in early intervention such as respite breaks.
For families like the McEvoys, short respite breaks are a lifeline and it is often a way for exhausted parents and siblings to have a physical, emotional and social break.
But it has become increasingly difficult for families to access respite care as core services are being “squeezed more than ever before” according to The Disabled Children’s Partnership.
They found struggling families were only being offered support once they reached “crisis point”.
This meant only 38% of families with disabled children were getting support such as short respite breaks, from their local council or NHS prior to lockdown.
As Dan says: “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.”
Elisa is known for her sociable personality and loves taking part story-time and massage at the hospice.
For her family, the weekly visits from nurses and carers gives them a little extra time and they warn life would be “horrific” without it.
Dan explains: “When Elisa’s nurse and carers come to our home it is our only chance to have a meal together as a family, really simple everyday stuff like that – but it’s these little things that make the difference.
“Knowing someone is there for you, your child, all of you, just makes the most unbelievable difference to the mental and physical well-being of the whole family.”
New research released by Pro Bono Economics and volunteers from Compass Lexecon has estimated that 11% of parents of children who need respite delivered by children’s palliative care providers would experience significantly less stress.
Martin Edwards, chief executive of Julia’s House, says: “What we hear, time and again, from families is that they have to reach 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 lockdown.”
Andy Fletcher, chief executive of Together for Short Lives, says the Government needs to act now to fill the “black hole” to ensure families get the “urgent” support they need.
Mr Fletcher says: “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.”
A spokesman from the Department for Education says they recognise the importance of hospices and the help they’ve provide to take pressure of the NHS.
“Throughout the pandemic we have worked with schools and councils to help support vulnerable children, including those with Special Educational Needs and Disabilities (SEND), including by asking schools to stay open to support those with Education, Health and Care Plans.
“We’ve provided the Family Fund with more than £37m this year to help over 75,000 families on low incomes raising disabled or seriously ill children and young people.
“We’re also increasing high needs funding for local authorities by £780 million this year to support those with the most complex needs and have made £3.7billion available to help local authorities deal with financial pressures arising from Covid-19, including on SEND.”
During the pandemic, £200m was also made available to the sector between April and July.
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