A better night's sleep for families with disabled children

Family Fund charity says sleep deprivation is a major concern for families raising disabled children
Mother and child asleep
Woman falling asleep on a bed after reading to young girl Photograph: Murdo Macleod for the Guardian

Looking after nine-year-old Jeremy* is an exhausting job. His multiple special needs include dyspraxia, emotional attachment disorder, traits of ADHD and some symptoms of obsessive behaviour disorder; he is constantly moving, finds it hard to express himself and is prone to severe mood swings. When frustration and anger strike, he is liable to lash out at both objects and people.

Jeremy often used to be up until 2am, just running around. With the help of medication, he now gets to sleep by 9.30pm or 10pm most nights. But, even then, there is little respite for his grandmother Vicky*, who has been looking after him for the last three years. They share a small room in her council house in Brighton, her single bed just a foot away from his.

"It's like his brain never ever turns off," Vicky, 50, says. "Even in his sleep he shouts out: he sits up, bangs back down again. It's so sudden – it makes you jump. He's banging his arms, his legs, and then he turns round and he's not kicking his bed – it's my bed that's being kicked and me in it. My quality of sleep is terrible. I wake up and I'm absolutely lethargic. Everything's an effort to do, and I have to get on and do it."

Vicky's situation is painfully common, and frequently under-recognised, according to the Family Fund, a charity giving grants to low income families raising disabled children, whose network of local advisers makes around 11,000 visits a year. When it asked 100 of them about the main health issues affecting children and their families, sleep deprivation and problems accessing sleep management services or advice came second on the list. The top issue was lack of behavioural management advice and support.

Among families on low incomes, often living in cramped accommodation, it's not uncommon for parents or carers to end up sharing bedrooms with disabled children, sometimes sleeping on the floor. Sleep can be disturbed by children's behaviour, or because they need feeding, monitoring or treatment throughout the night. The Family Fund's advisers reported parents in some families sleeping in shifts as they try to manage their child's needs.

"For lots of families, the sleep deprivation they experience with a baby goes on for ever," says Clare Kassa, the charity's network development manager. "They're up all night and then their children are then on the go all day, too; I've done so many visits where people just look exhausted. It has a huge impact on their lives. Lots are still trying to hold down jobs. When you're attempting to do that with long term sleep deprivation, something has to give, and stress and depression are common."

Siblings often suffer, too, reporting being unable to function well at school because of tiredness. Of the Family Fund advisers questioned, 15% talked about the added impact that disability has on siblings.

Tackling the issue would help with the problem that came third in the Family Fund list of concerns: the need for better mental health support, says Kassa. Yet advice on sleep management and funding for measures that can help are thin on the ground.

"A good night's sleep is the key to so much, but support services are not designed to reflect that," she says. Hard-up families may need replacements for beds that have been broken by children with behavioural problems, or mattresses ruined by incontinence, but the money is often not available from statutory authorities.

Last year alone the Family Fund gave grants for 5,107 beds, as well as items such as monitoring devices, specialist bedding to allow children to sleep comfortably and blackout blinds for those who find it hard to settle because of sensory stimulation. One mother it helped had been sleeping on a duvet on the floor next to her child, who had cerebral palsy, because the local health authority was arguing about paying for a suitable listening device. The Family Fund paid for a sofa bed.

"There's a need to take a proper broad view, weighing up the cost of the investment in effective sleep management support services against the extra strain on all kinds of services – from respite provision to behaviour management and mental health support – created by families who are simply not able to cope because, on top of everything else, they are just too tired to function," says Kassa.

Vicky says she has found little support available on the issue of sleep, apart from the medication Jeremy is now prescribed. She is trying to get a larger property through the local authority's bidding system, but all those on offer are too far away and, having taken a year to get him settled at a nearby school, she doesn't want to move him.

"A lot of people find his behaviour very difficult, so no one ever offers to take him out," she says. "He doesn't have friends, either – I think they're all scared of him. You're basically left to get on with it. I'm his nan and I also have to be his friend. I play football with him and take him out. He wants you to play with him constantly but, when you're that tired, your body doesn't want to move. I get so many colds, mouth ulcers, viruses, I think because my immune system is so weak. It does affect you. It makes you feel very low at times. Then you remember why you're doing it and you just think you have to get on with it."

* Names have been changed
