A six-year-old boy has suffered a burst lip and a range of injuries from his bed with his much says it a "death trap".
Kaylan Gibson has cerebral palsy among other conditions, and has fallen out of his adjustable adult hi-low bed and barely avoided becoming stuck in it. Mother Kayley Thompson sleeps in the single bed with her son, feeling she has no other options to keep her little boy safe.
The family need a special bed for Kaylan, and claim an occupational therapist said it was likely they would get a specially designed Oasis cot bed, with high, padded sides to keep him safe at night. But Kayley and dad Jordan Gibson's hopers were dashed after social workers informed them that Kaylan will not be given the bed, reports ChronicleLive.
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Kayley, from Pelton, County Durham, 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."
The six-year-old was born 28 weeks premature, and had two grade four bleeds on his brain. As a result, he has cerebral palsy, autism, and ADHD.
Kaylan can't walk or manage day to day tasks, suffers from sensory overload, and has hydrocephalus, which causes fluid on the brain. He required a shunt to drain it, which then got infected, meaning he required brain surgery to have a new one fitted.
Kayley says his mobility has since declined. Since he was three Kaylan had a bed which zipped up, keeping him safe.
But after he left hospital in February following surgeries which saw him fitted with a colostomy bag and PEG, he needed a hi-low profile bed, which would also stop him falling or injuring himself. Kayley, 25, 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."
Kayley, who has no other children, raised an issue with Kaylan's occupational therapist that the corners of the bed are too sharp, and was told to "put bubble wrap around the bed." She added: "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 put blankets around the corners and sleeps with Kaylan, despite having Fibromyalgia herself, which causes fatigue and widespread pain. She claims she was told Kaylan could not have an Oasis cot bed because it would be "enclosing Kaylan" and it's "against County Durham rights".
But Kayley and Jordan, 26, says that due to Kaylan's limited mobility and severely limited sight, he can't get up if he falls out of bed, therefore it would be the ideal bed for him. 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. I thought we're just going to have to get up and fight ourselves for this bed."
The parents have now set up a fundraiser on JustGiving to raise the £8,500 needed for the bed. Anyone wishing to donate towards a bed for Kaylan can do so via this link.
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 paediatrician, 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."
