Kayley Thompson, from Pelton, County Durham, is unhappy with the NHS and her council after social workers reportedly said a new bed would be “enclosing” her son
A desperate mother has to sleep in a single bed with her disabled son to keep him safe at night as the youngster has been denied a specially-adapted support bed on the NHS.
Kaylan Gibson, six, has cerebral palsy and other medical conditions and is susceptible to falling out of his regular bed at night.
An occupational therapist had said it looked likely Kaylan would receive a new specially designed Oasis cot bed, with high, padded sides to prevent him from injuring himself.
But Kaylan’s family has now been told the structure won’t be provided, Chronicle Live reports.
Kaylan’s mum Kayley Thompson, 25, said: “I feel betrayed. Disappointed and betrayed. I literally cried throughout the whole meeting but the response I got was ‘Do you not think you’re just sleep deprived? I think you need to get a good night’s sleep.’
“How can I do that? When you share a bed with a child who has so many needs you’re scared to go to sleep in case you hurt him.”
Kayley, from Pelton, County Durham, now sleeps with her son in his single bed to make sure he is safe.
She and Kaylan’s dad Jordan Gibson, 26, are now fighting to buy the bed privately – but it costs £8,500.
They’ve launched a crowdfunding site to ask for donations and have already raised nearly £2,000. To donate, click this link.
Kayley said: “I thought we’re just going to have to get up and fight ourselves for this bed.”
Her son was born at 28 weeks premature with two grade four bleeds on the brain, which resulted in him having cerebral palsy.
“He is unable to walk or manage day to day tasks and also struggles with ADHD, as well as being diagnosed autistic and has sensory overload.
Kaylan also has Hydrocephalus – fluid on the brain – which has resulted in him needing to have a shunt to drain the excess fluid.
And when Kaylan’s shunt got infected earlier this year he required brain surgery to have a new one fitted and Kayley has noticed his mobility has declined.
From the age of three, Kaylan had been sleeping in a safe space bed, which zipped up and Kayley says helped to keep Kaylan mentally and physically safe for sleeping.
However, after leaving hospital in February following more surgeries to be fitted with a colostomy bag and PEG, Kaylan needed a hi-low profile bed, as well as a bed that would prevent him from falling or injuring himself.
Kayley, who has no other children, said: “We were stuck and needed a bed ready for Kaylan coming out of hospital which resulted in an adult high profile bed which he has already banged his mouth, head and body off and caused him, and also us as parents, to be distressed and anxious due to not having a suitable bed.”
The mum of one said the corners of Kaylan’s current bed are too sharp and when she raised this with the family’s occupational therapist she was told to “put bubble wrap around the bed”.
Kayley said: “I just said ‘Can you be serious? This is a safety hazard for a child to suffocate’.
“She then tried to ring me and said that the only thing we could really do was to put bubble wrap around until we got a suitable bed for him, which is not acceptable at all from a ‘professional’ in charge of Kaylan’s needs.”
Kayley instead opted to put blankets around the corners of the bed to try and prevent Kaylan from hurting himself and has continued to sleep in the same bed as him, despite suffering from fibromyalgia, a condition that causes widespread pain across the body and extreme tiredness.
Kayley claims she was told she would not be receiving an Oasis cot bed because the bed would be “enclosing Kaylan” and it’s “against County Durham rights”.
However, Kayley and Jordan believe that this would be the perfect bed for Kaylan as due to his limited mobility and severely limited sight he is unable to get up if he fell out of bed.
Kayley said: “No one was there to back my corner and three of the professionals who were in the meeting hadn’t even seen the bed that we need for Kaylan so I couldn’t even try to sell it to them.
“I gave the occupational therapist a list of pros and cons to read out and she didn’t even read one of them out.
“Two of them in the meeting hadn’t even met Kaylan before either. They didn’t know what his mobility or his mental state was like and were just going off what other people have said. My heart sank.”
Sarah Burns, Head of integrated commissioning for Durham County Council and County Durham Clinical Commissioning Group, said: “We would like to apologise to Ms Thompson for any upset caused during the visit to her home and can assure her this was not the intention.
“We are very happy to speak with both her and colleagues to resolve this matter as quickly as possible in the best interests of Kaylan.”
A spokesperson for County Durham and Darlington NHS Foundation Trust said: “We are very sorry that Kaylan’s family is unhappy.
“Our multi-disciplinary team, which includes a pediatrician, occupational therapist, physiotherapist and social worker, works closely with families to ensure those in our care receive the safest and most appropriate equipment to meet their needs.
“We would welcome an opportunity to discuss the family’s concerns further and they can contact our patient experience team on 0800 783 5774.”