SEVERE SLEEP DEPRIVATION AMONGST ENGLAND FAMILIES RAISING DISABLED CHILDREN EVIDENCED IN NEW REPORT
Thousands of families raising disabled children across England are in desperate need of support and advice on managing sleep deprivation says Family Fund.
Parents and carers raising disabled or seriously ill children have spoken out about the impact of lack of sleep in a new report launched today by the Family Fund, the UK’s largest grant making charity to low income families raising disabled or seriously ill children.
The report, ‘Tired all the Time’ will be presented today at Westminster today where Edward Timpson MP, Minister for Children and Families will speak.
This report forms part of Family Fund’s 40th year activities in raising awareness of its work and the barriers that families continue to face. It reveals the impact of sleep difficulties on households, capturing first hand experiences of over 2,000 parent and carers raising disabled children across the UK in their own words. Key findings show:
- 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 1/3 had not sought professional support.
One parent, Purabi from Croydon spoke to Family Fund about her experience:
“My daughter Rhea, 10 years old, suffers from very severe Cerebral Palsy, affecting every single aspect of her life. She cannot eat, so is tube fed; cannot breathe at night, so is ventilated; has drug resistant epilepsy, and has strong seizures every day and every night. She is also blind, has scoliosis, global developmental delay, kidney damage and is non-verbal. I have been so tired some days, I have not felt safe to drive up to Rhea’s appointments, too tired to speak clearly, some days feeling like a zombie. Too tired to have a life of my own and do basic tasks like cooking a healthy meal. I also have had episodes of severe dizziness.
“As a single mum, coping with a baby 24 hours a day on my own was no easy task. The only break I had was three hours a week when a carer would sit with Rhea, but I would rather use those hours catching up on chores than sleep. The Family Fund has been very supportive over the years with grants for sensory equipment, and helping with our service contract for the two ceiling hoists that are vital for Rhea’s safety.”
Parents, carers and the wider family members, including siblings are experiencing significant financial, social and emotional challenges as a direct result of not having enough sleep.
Families from across England, and the rest of the UK shared with the Family Fund how widespread the issue of sleep deprivation is. Through working with families for 40 years, Family Fund knows that sleep continues to be a key issue, this report is in response to the demand to raise the issue on families’ behalf, giving them a voice. The report intends to draw attention to this key health issue that can affect the whole family’s health and well-being with long-term consequences such as limiting opportunities in education and employment.
Families’ responses identified three key needs to be shared with policy and decision makers across the UK and other charitable organisations:
- 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.
Cheryl Ward, Chief Executive at 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 Scotland and the rest of the UK. We want to help bridge that gap and give families a better night’s sleep.”
To access family case studies, gain a copy of the research report in full or to discuss partnership working, email Family Fund: comms@familyfund.org.uk.
Ends
Notes to editors
1. Reception events
As part of its 40th year activities, Family Fund is hosting receptions across the UK to share the findings from the ‘Tired all the Time’ report. Following the launch at The Senedd on Monday 15th July, and receptions at Stormont on 19th September then Holyrood on 3rd October, the report will be presented at Westminster, London on 16th October 2013.
For more information on these receptions, please contact Alison Jessop at the Family Fund on Tel. 01904 571 094, Mobile: 07825 699192, email comms@familyfund.org.uk
The Family Fund is one of the UK’s largest grant-giving charities which, for forty years, have helped families with disabled children. It helps ease the additional pressures faced by low-income families raising a disabled child by giving them grants for a wide range of goods and services, including washing machines, dryers, fridges, clothing, bedding, sensory toys, computers, much-needed family breaks and more, but also give grants for items to aide a better night’s sleep such as beds, bedding, sleep monitors and blackout blinds. Across the UK last year, the Fund supported 64,020 families with £33 million in funding, 5,000 more than the previous year. In Scotland last year, Family Fund helped 5,515 families. Family Fund receives grants from private donors as well as each of the four UK governments.
3. Key facts and figures
- Estimated 800,000 disabled children in the UK (DWP, June 2012)
- Sleep problems affect 80% of disabled children, compared with 25% of non-disabled children https://www.scope.org.uk/sleeping
Alison Jessop, Group Communications Manager
Family Fund, 4 Alpha Court, Monks Cross Drive, Huntington, York, YO32 9WN
Tel: 01904 571094 Mobile: 07825 699192 email: comms@familyfund.org.uk
Family Fund
The Family Fund is one of the UK’s largest grant-giving charities which, for forty years, have helped families with disabled children. It helps ease the additional pressures faced by low-income families raising a disabled child by giving them grants for a wide range of goods and services, including washing machines, dryers, fridges, clothing, bedding, sensory toys, computers, much-needed family breaks and more, but also give grants for items to aide a better night’s sleep such as beds, bedding, sleep monitors and blackout blinds. Across the UK last year, the Fund supported 64,020 families with £33 million in funding, 5,000 more than the previous year. Family Fund receives grants from private donors as well as each of the four UK governments.