HOSPICE Julia’s House is calling on the government to provide more support for carers of terminally ill children by plugging a '£434 million gap' in funding for social care.

With many families caring for a seriously ill child with complex needs struggling to find respite due to the ongoing coronavirus lockdown, the need for short breaks to relieve this stress is more important than ever, the charity says.

Yet local authority funding for short breaks for children’s hospices was cut by 12 per cent in 2019/20.

Dan McEvoy, from Bournemouth, gave up his IT career to become full-time carer to his daughter Elisa after she was born with cerebral palsy.

He said: “When you give up work to care for your child you lose your status, the support and friendship of colleagues and your income.

“You become so isolated it’s like falling out of society – and once you are out it is really difficult to find your way back in.

“I was trapped in a cycle of exhaustion and anxiety. Sleep is virtually impossible. You try not to think about it but you go to bed every night not knowing if your child will wake up in the morning.

“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.”

Existing legislation and government policy make it clear that local councils in England should make sure families can access short breaks, the charity 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,” says Martin Edwards, CEO of Julia’s House.

He added: “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.”

National children’s palliative care charity Together for Short Lives said local authority funding 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.

CEO Andy Fletcher 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 need.”