A Spalding family with a 28-year-old disabled son say they’re now struggling to get any respite care due to a lack of facilities in Lincolnshire.
The Earth family includes George who, due to a rare genetic condition, needs around the clock care as he’s unable to speak, walk unaided or feed himself.
Mum Lynne and dad Nigel are allowed a number of days respite care for him, funded by Lincolnshire County Council.
It’s something they’ve taken up with George staying at Cedar House in Spalding as a result.
Now though the NHS have said the service for people like George has been ‘suspended’.
It’s because George is tube fed through a PEG (percutaneous endoscopic gastrostomy).
The Lincolnshire Integrated Care Board (ICB) say it follows a change in guidance by the National Institute for Health and Care Excellent (NICE).
Lynne says the family were given a list of places that could provide respite care in Lincolnshire, but they were either for over 55s, or, in one instance, upstairs at a building that doesn’t have access for the disabled.
George’s sister Hannah, who works as a veterinary nurse, is able to care for her elder brother, but the three are unable to go away together without respite care.
“George has been attending Cedar House for ten years,” said Lynne, of the care site ran by Making Space. “Now all of a sudden they can’t take him.
“Respite places are turning him down.
“Everyone with a feeding tube like George now can’t access respite.
“It’s supposed to be for those with the most complex needs.
“The NHS says the new guidelines mean every member of staff needs to be trained on each individual.
“Unless these change it doesn’t look like George will go back, even though its frustratingly just down the road.”
The Earth family, who live on Wygate Road, were told George would likely not see 12 months when he was born, but he’ll celebrate his 29th birthday next month.
The type of tizoneplus mosaic he has is so rare the family don’t know of any other cases.
“It’s like Down’s Syndrome,” said Nigel “But it’s a bit more complex.
“George has to be assisted in everything.
“With the respite care we usually take two or three nights a month just to give us a little bit of a break.
“Obviously he gets older, but we do too,” said Lynne. “It gets more challenging.
“We both have numerous ailments and it makes the need for respite more important. Not only do we have George but we’ve two elderly parents we help look after too.”
Joanna Tubb, Lincolnshire County Council’s head of service – learning disabilities, said: “Following a change to national guidance from NICE, Cedar House has informed us they can no longer support someone who has medication administered via PEG tube.
“In respite settings, staff are not working with individuals on a regular basis, and, as medication regimes, feeding plans and PEG needs may change between visits, it means staff are not able to meet the new guidelines.
“We are currently working with health colleagues to try to find a solution for providers of respite care.
“We realise this situation is frustrating for those affected, and we are exploring alternative options for their respite care in the interim.”
