CASE STUDY: Removing Barriers: Children in crisis can’t get specialist equipment quickly enough

November 27, 2018

Some situations require specialist equipment in an emergency – when a child’s condition and associated behaviours put their lives at risk of serious injury or death.  Despite most local health and social care services having jointly commissioned integrated equipment stores to cater for the emergency needs of adults, no such public service exists to respond to the urgent, often life-threatening, needs of disabled or terminally ill children.  As a country we’re failing some of the most vulnerable in our society.

For the past five years Newlife has been running the UK’s first and only Emergency Loan service, delivering specialist equipment to disabled children in crisis within 72 hours of request.

If it hadn’t been for this emergency service a family in Sheffield would still be at breaking point – no-one in the house has slept properly for years.  Just getting to the end of each day is an achievement for Nikki and Simon Giles, who care for their three children, eight year old Isobel and seven-year-old twins Max and Freddie.  

Max and Freddie both have ‘core’ autism and severe learning disabilities, while Isobel has ADHD and autism.   

Over the last year Max’s condition has caused his behaviour to become more aggressive and agitated; breaking windows, injuring himself and those around him.  His erratic behaviour grows worse at night; banging and trying to break the windows, crawling around trying to escape.   If he does get out, he risks his life without realising.  He has no concept of danger, once climbing onto the roof of their terraced house ready to jump.   

The sheer noise and upset has a knock-on effect triggering both Freddie and Isobel’s anxieties.   

Having a safe and secure place for Max to retreat to at night – and during the day – would have a huge impact on everyone’s life, but specialist beds of this type are not readily available to help children like Max and never in an emergency.

Three-fold increase in emergency requests for equipment from local health care professionals in the last five years.

Sheila Brown, said: “We’ve proven an emergency equipment service works, but more worryingly, that there’s a desperate need for this type of rapid response for specialist equipment for children.   We must ensure that no child is in danger because they don’t have the right piece of equipment and are calling on government and local services to introduce local based emergency equipment services – it really is a matter of life and death for some children.” 

“Every day is a battle to keep Max safe from himself and the other children safe from Max.  My biggest fear is he’ll escape and drown in the lake over the road.  We do everything we can to keep him safe but it’s just not enough – we live in constant fear.”

Nikki Giles, Max and Freddie’s Mum


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