Newlife, which helps disabled and terminally ill children, and has spent more than £350,000 on providing specialist beds in Scotland, says there are 36 children who are going without this piece of vital equipment.
The charity says a specialist bed which it can loan to parents while they await local council funding can cost anywhere between £1,500 right up to £10,000. The more expensive beds come with a high to low function that goes down to the floor to allow a child in a wheelchair to transfer on to it and the bed can be raised, which is essential to stop children who are pump-fed from choking.
Newlife also claims the true number of recognised disabled children in Scotland has been underestimated according to statistics from the Family Resource Survey which show a rise of 10,364 on the previous year 2016 bringing the total to 82,541.
The charity has spent a total of £1.2 million across Scotland to provide specialist equipment to help 712 children which it says illustrates a shortfall in provision.
A spokesperson for Newlife said: “Our experience is that health and social care bosses in Scotland often treat disabled children as ‘mini adults’ and try to provide adult-sized hospital beds with low bar sides or suggest children should sleep on mattresses on the floor.
“These policies totally fail to understand the very distinct needs of kids who often lack understanding around danger and safety. It should never be acceptable for a disabled child to have to sleep on the floor, or for a parent to go to bed at night terrified that when they wake up, their child might have died.
“Newlife believes that all children in the UK, regardless of their disability, should be able to sleep comfortably and safely.”
The Scottish Government is about to open a consultation on the proposed National Framework for Families with Disabled Children and Young People. This was floated in 2016 but has been delayed.
A Scottish Government spokesperson said: “The provision of equipment for children and young people is an essential part of the therapeutic management of their disabilities and is effective both in terms of improving quality of life and potentially reducing the need for more intensive intervention and care. All health boards and local authorities have a statutory responsibility to provide equipment that meets the needs of disabled children and young people in the community and to work in partnership with relevant bodies to ensure the best possible care for those with complex needs.
“We are currently reviewing our guidance on the provision of children’s equipment with a view to issuing an update later this year.”
Francesca Vernel, a primary teacher from Lenzie, near Glasgow, told Scotland on Sunday how she had been pushed from “pillar to post” in her quest to obtain a specialist bed for her severely disabled son.
Daniel, aged five, suffers from grade 5 quadriplegic cerebral palsy – the most severe type – and has to be fed through a tube.
Vernel said she thought Daniel had suffocated in January while sleeping in his old standard baby cot after he slipped off the reflux wedges that kept him propped up at an angle to ensure that he didn’t aspirate on his own vomit.
She said: “He’s essentially almost like a newborn baby in a two-year-old’s body so he’s relying on adults for everything.
“He suffers a lot from chest infections because he’s got severe reflux as part of the condition and he vomits quite regularly. So the minute he gets a cough he’s sick, he aspirates on vomit, so it goes into his lungs so he ends up with chest infections and in hospital.
“One morning I went to get Daniel up – he was still in a bog-standard baby cot and in the cot I had him on two reflux wedges, so he can lie at an angle because if he lies flat he’ll be sick.
“I saw that he had slipped down the cot and had one leg stuck over the end of it and his other leg was stuck through the bars and his face was stuck right in against the side. Because he can’t move, he’d got himself stuck and couldn’t get out of that position.
“I thought he’d suffocated because his face was against the side. Now he’s got heavier he slips down the cot, he can wriggle about but he can’t do purposeful movement.”
Vernel described days spent to-ing and fro-ing between Daniel’s physiothereapist and the local NHS board and council. She eventually contacted Newlife after failing to get anyone to take ownership of the problem and provide her son with a specialist bed, and now has one on loan until July while she sorts things out with the local authorities.
Vernel added: “I contacted Newlife to ask how I would go about applying for funds and to get a bed. On the Theraposture site it said that Newlife could help with funding for the bed which is £5,500. He’s got an emergency one from Newlife just now and they told me they wouldn’t be able to provide any funding until I’d exhausted the possibility of getting funding from the NHS or the council.
“I learnt from the charity that East Dunbartonshire social work should be providing a bed for him but nobody was willing to say yes and when I phoned the council no-one knew what I was talking about.
“Eventually they put me through to social services who said they only dealt with beds for adults – so from their point of view they said there was absolutely nothing the council could do to help. ”