Tired all the time? Sleep issues for families of disabled children

Clare Kassa is the Partnership Development Manager at the Family Fund, a UK-wide charity that provides grants to families of disabled children on low incomes – including children and young people with acquired brain injury.

Last year the Family Fund helped over 69,000 families which gives them a great deal of insight into the range of issues affecting families of disabled children.  Here, Clare tells us why the Family Fund is interested in sleep and how their research ‘Tired all the Time’ came about.

A child sleeps

Why did we start looking at sleep?

For over 40 years the Family Fund has been providing grants to families of disabled children to meet a variety of needs – including helping families to sleep better. We receive lots of requests for beds, bedding, sleep monitors, blackout blinds and items which soothe children off to sleep like sensory toys or weighted blankets. But we were finding that families often didn’t talk about the impact their children’s sleep difficulties have on family life or indeed didn’t ask for support with sleep from health or social care professionals. There was a strong feeling that this was part and parcel of their children’s disability and something they “just had to get on with”.  

How our 'Tired all the Time' report started

Initially we carried out a survey with our Independent Assessors, who visit families on our behalf, to find out what the top three health issues were for families. They reported that sleep was definitely a major concern.
A young girl asleep symbolises relaxation.
We published a short article 'A better night's sleep for families with disabled children' in The Guardian and were overwhelmed by the response from parents and professionals alike asking us what more we could do on this issue. Families wanted clear evidence to take to commissioners so that they could prove that this wasn’t just a problem for their family, but for many others too. Over the following few weeks, more than 2,000 families responded to our short survey. We had definitely opened a Pandora’s Box! The responses were incredibly powerful and we knew we had to do something with them, so that these voices could be heard at every level, including government and policymakers. These 2,000 voices formed the basis of our report “Tired all the Time” which was launched across the four UK parliaments.  

What did we find out?

Some of the key findings of the report showed:
  • Over 93% are up in the night with their children
  • 49% have health issues due to the lack of sleep
  • 22% have had relationship problems as a result
  • 11% experience tiredness at work
  • 15% are concerned about siblings and the wider family’s health
  • Almost a third had not sought professional support.
Parents, carers and wider family members, including siblings, told us they were experiencing significant financial, social and emotional challenges as a direct result of not having enough sleep.  Sleep deprivation impacts on education and employment opportunities and many families reported that family health was affected. One parent said they had had a seizure through lack of sleep and another said
After 14 years without a night of solid sleep I wonder how long I can continue to care for him."
Many families were at breaking point because of lack of sleep. Parents and carers told us they snatched small amounts of sleep, never really switching off because of the vigilance needed to listen out for their children throughout the night to keep them safe. Parents were also administering complex medical routines overnight. Examples included giving medicine, dealing with seizures, suctioning and giving pain relief.  For a lot of families, everything hinges on getting a good night’s sleep. As one Dad in Sussex recently told me
If sleep works, everything works."
The research told us that families have three key sleep related areas that need to be addressed:
  • To be listened to, believed and heard when they talk about sleep difficulties
  • That their concerns are acted upon at an early stage
  • To have timely and regular support, not just one consultation, as sleep deprivation is often not a short-term problem.
The report highlighted a number of key actions we wanted to see happen, including clearer pathways to support for families, better training for health and social care professionals and access to short breaks for those families who need it. One of the most alarming areas in the study was the lack of understanding some families received when asking for help and advice. One parent told us
I spoke to my Specialist Health Visitor. She clearly didn’t really believe me when I said how many times she woke every night. She told me it would get better as she got older - not very helpful at the time. She didn’t suggest any other sources of support."
Parents reported some positive support provided by voluntary organisations, and highlighted the importance of advice from other parents. But overall the support seems to be patchy and finding out what is available locally is often unclear, or there can be long waiting lists for specialist help such as that provided by sleep clinics. Some of the solutions though do not have to be expensive – some of the things that work are relatively simple, such as using alarm pads primarily used for dementia patients, for disabled children who wander at night.  

What next?

We had an amazing response to the report, including contact from two universities undertaking work on sleep issues. Parents have told us that they have been able to reference the report when looking to get extra support, including children’s health care plans. Professionals have reported using the report to influence what services are listed in their Local Offer in England. The report has also been used as a basis for some workforce development training for staff within local authorities.
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But we know there is a lot more to be done before families and children get the sleep support they deserve. We are currently working on ways we can make some of the recommendations from the report happen to ensure real change for families. Watch this space! If you would like to find out more or have examples of good practice you can share with us, please do not hesitate to get in touch. Ask for help and let others know the sleep difficulties you are experiencing - tell your GP, your consultant, your health visitor, or your child’s school. Sleep should be and CAN be improved for so many children and their families.  For more information about Family Fund and the work they do visit their website here.
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