Learning Disability Today
Supporting professionals working in learning disability and autism services

Many parents of disabled children suffering severe sleep deprivation, report finds

sleepAlmost half of parents of disabled or seriously ill children are suffering health problems as a result of sleep deprivation, a new report has revealed.

The report, Tired all the Time, by Family Fund, a grant making charity to low income families raising disabled or seriously ill children, found that 93% parents and carers are up in the night with their children and this is impacting on their daily lives.

For instance, of the more than 2,000 parents and carers surveyed, 22% have had relationship problems as a result of their lack of sleep, 11% experience tiredness at work and 15% are concerned about siblings and the wider family’s health.

However, almost a third had not sought professional support to help deal with this.

Families surveyed identified three key needs:

• To be listened to, believed and heard when they talk about sleep difficulties
• Their concerns are acted upon at an early stage
• Timely and regular support, not just one consultation, as sleep deprivation is often not a short-term problem.

One parent, Andrea from Merthyr Tydfil, said: “I said goodbye to sleep when my son Jayden was born at 24 weeks. Stress and upset of Jayden’s diagnosis, constantly being told by professionals he’s significantly behind, worrying about his schooling, fighting to get help from social services and the constant lack of sleep has led to severe anxiety, no sleep at all and medication. The sad thing is we’re not the only family who go through these issues daily surviving on little sleep and lots of coffee.”

Cheryl Ward, chief executive of the Family Fund, said: “This report shows the daily mental, physical and emotional challenges that families with disabled or seriously ill children or young people face when sleep eludes them night after night. For many families, sleepless nights continue on relentlessly, year after year, sometimes well into adulthood with often varying levels of support or advice available.

“At the Family Fund we will, as we have for 40 years, continue to provide grants to support families across many areas of their lives including helping them to sleep better. There is far more to be done, the intense desire from parents for wider recognition of the impact of sleep deprivation cannot be ignored and we are keen to work with other organisations providing support across the UK. We want to help bridge that gap and give families a better night’s sleep.”

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