A family unable to get respite care for their disabled son has been backed by a woman who says she’s trained six-year-olds to provide the procedures he needs.
George Earth (28) needs round the clock car as he is unable to speak, walk unaided or feed himself due to a rare genetic condition.
But where previously there were services that would take him in to allow his mum Lynne, dad Nigel and sister Hannah some respite, now he’s being turned away.
It’s because George, is tube fed through a PEG (percutaneous endoscopic gastrostomy).
Lincolnshire County Council told The Voice the change to George’s care was due to altered guidance from NICE (National Institute for Health and Care Excellence) and the home he was staying with can no longer support someone who has medication administered via PEG tube.
Lynne says George is being turned down for overnight care everywhere, and the family hasn’t had a proper break since March.
Rae White, who recently turned 18, has had a PEG all her life and called the change ‘baffling’ and ‘penny pinching’.
“It’s them saying we don’t have enough money, so where can we cut back on something?” said Rae, who has the debilitating condition spinal muscular atrophy. “PEG care is not difficult, a monkey could do it. When we were little kids, I taught my 12-year-old best mate how to do my PEG. It’s really not hard.
“My young six-year-old nephew was scared of it, so I taught him how to do it.
“Respite is meant to be because they care. It’s to give people that space and that setting so they get a break and don’t have to rely on carers.
“It’s an extra level of support and denying them shows they don’t care about their patients.
“If they’re willing to cut back on something so minor, just for a few extra quid it shows they’d don’t care about their patients.”
Rae’s mum Tanya White called it ‘crazy’ and spoke of how valuable it was when she had just six hours of care a day.
“None of our staff have to be PEG trained, so we train them,” she said, having also recently gone through a fight to get round the clock home care for Rae as she became an adult.
“Because of the PEG, Rae needed a chaperone in taxis which were trained.
“If a taxi service can do it, surely respite sites can.
“It’s really sad they’re missing out on respite for something so simple.”
A spokesman for Lincolnshire County Council said: “We continue to seek a resolution to the issue and we continue to support the family and other alternative respite services.”
Lincolnshire ICB were approached for a comment but had not responded at the time of going to press.
