Seriously ill children who are being cared for at home by their families are being put at risk due to “drastic cuts to care support”, a charity has warned.
Research by national charity WellChild found that staff shortages were leaving parents exhausted and vulnerable, with one mother saying the situation was “an accident waiting to happen”.
Data, shared exclusively with Sky News, found 80% of affected families were not receiving the state-funded care support to which they are entitled.
88% said there was an expectation from care providers that parents would cover the ever-more frequent staff shortages.
“It is unsustainable to us to expect families to take on that care responsibility all by themselves,” Matt James, director of communications and engagement at WellChild, told Sky News.
“Ultimately, these parents won’t be able to sustain this level of care for much longer and those children will end up back in hospital, living long term in hospital which places increasing pressure on the NHS, and that’s not good for anybody.”
There are an estimated 100,000 families across the UK with a sick or disabled child at home.
Jill Evans’ son, Noah, 10, has a rare lung disease and requires 24-hour “awake” care.
Due to a lack of care staff, Ms Evans has had to cover 33 out of the past 35 nightshifts.
“It’s just a nightmare, on so many levels,” Ms Evans told Sky News.
“I mean not even someone working on a ward would do more than four nights. Heaven forbid if I missed something and it was on my watch, you know if Noah’s tracheotomy tube blocks and I miss that because I’ve fallen asleep.
“That’s Iife threatening.”
Existing staff shortages within the social care sector have been exacerbated by the COVID-19 pandemic.
The Department of Health and Social Care told Sky News that “carers play a vital role in our communities and we owe them a debt of gratitude”.
“We are supporting the care sector with a £462.5m recruitment fund.”
But that funding is to cover recruitment across the whole social care spectrum, and the current funding deficit just within disabled children’s social care is more than that alone.
“I worry so much about the future,” Alison Ruston says.
She gave up working full-time to care at home for her daughter Jessica, 15, who was born with a chromosomal abnormality.
“It’s not even just about what will happen with Jess but about what happens now for all families.”
Jessica has complex medical needs and is now receiving end-of-life care.
She requires two people with her, day and night, and Mrs Ruston says she is more frequently being asked to fill in for staff absence.
“I know I’m Jess’s mum and parental responsibility and all that, but what we’re being asked to do it beyond parental responsibility. We’re full-on nurses.”
“We have a very small team and I’m acutely aware that if anyone goes off, that’ll be it – there’s no one else.”
Mrs Ruston says calls for help to local authorities or care providers go unheard.
“It’s ‘oh, we haven’t got any cover’, and however you say ‘I don’t think I can do this, I am exhausted’, it doesn’t matter, you’ve got to.
“And as a parent of course you do it, don’t you.
“But we will be the last to be thought of.”