SEVERE SLEEP DEPRIVATION AMONGST SCOTLAND FAMILIES RAISING DISABLED CHILDREN EVIDENCED IN NEW REPORT

Thousands of families raising disabled children across Scotland 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 Holyrood, Edinburgh where Aileen Campbell, Minister for Children will speak.  She said:

 “This report shows how sleep deprivation can be very damaging not just to the child but their whole family. Tiredness makes it more difficult for anyone to deal with even day to day chores and for a parent or a carer of a disabled child this is an unnecessary worry that every family can do without, especially if it is over a long period of time.

“Families in this situation need to be listened to and their concerns acted on through timely and regular support.  The Family Fund is helping families find practical solutions to help children sleep, but we need there to be a wider acknowledgment that families in this situation can expect to be able to access support when this starts to become an issue rather than allowing it to take root and have an even greater impact.”

This report forms part of Family Fund’s 40thyear 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, Dean from Edinburgh spoke to Family Fund about his experience:

“My son, Dillan, now three years old, was diagnosed with Down’s Syndrome at birth.  With low muscle tone, he was unable to retain milk and was often sick after a feed, meaning lots of feeds plus frequent changing of bedding and clothes.  This together with eczema and severely dry skin meant constant irritation and restlessness throughout the night, unable to change position.  Our sleep is still interrupted as he gets older and his condition develops with its new challenges. “

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 Scotland, alongside England, Northern Ireland and Wales 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 reception at Stormont on 19th September, the report will also launch at:

• Holyrood, Edinburgh on 3rd October 2013
• 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

2.      About the 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.  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. 

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