Five-year-old Arran Breslin was forced to sleep in his buggy because NHS Greater Glasgow couldn’t provide him with a specialist bed to keep him safe.

Arran has no awareness of danger and can’t be left alone even for a minute.  He is frequently awake from midnight to 5am each night under the watchful eye of his exhausted mum who makes sure he doesn’t hurt himself because he repeatedly bangs his bed and throws his mattress against the wall.

Mum, Sarah Bannister said: “After Arran destroyed three high street beds his dad, John, and I knew we couldn’t carry on like that. The only safe place for him was strapped into his buggy. He felt secure there and couldn’t come to any harm.”

Sarah was told by Arran’s Occupational Therapist that NHS Greater Glasgow couldn’t provide a bed for him, and advised her to apply to Newlife for help. The charity quickly responded through its emergency loan service, providing a specialist bed which transformed life for the whole family.

Sarah added: “I can’t believe how well the specialist loan bed from Newlife has worked. Arran now sleeps for 11 hours straight. It’s amazing to see him so calm and comfortable at night.

“I think the NHS should have done more to help us, if we had received a specialist bed sooner life would have been a lot easier. I was always up with Arran through the night and being so exhausted all the time affected us all very badly.”

Newlife provided a safe and secure bed for Arran, but they are not readily available on the NHS to help children like him 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.”

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.

Sheila continues: “There’s lots of complex reasons why children are being failed.  The law protects their rights to live safely, to have the opportunity to learn and to reach their potential, whatever that may be.

“This matters to every family, cancers, accidents, birth defects and infections.  These risks are with us every day.  No-one thinks it will happen to them.  I didn’t, but that’s the reality.

“We believe that if the government ‘fixes’ the four big issues highlighted here, then hundreds of thousands of our children will benefit.”

NEWLIFE’S FOUR-POINT-PLAN

We are calling on national and individual local statutory services to work with us to put in place our four-point-plan which will change hundreds of thousands of children’s lives:

FIX ONE: Cease the use of blanket bans for rationing equipment

Blanket bans are commonly used as a way to manage budget constraints.  Essential equipment is denied ‘under any circumstances’, this is arbitrary and fails to respond to their assessed needs.

FIX TWO: Establish and emergency equipment response service

Children in crisis cannot get equipment quickly enough.  Local statutory services don’t have an effective emergency equipment response service for children in urgent need.  This needs fixing to prevent injury, to allow hospital discharge and to relieve pain.

FIX THREE: Introduce maximum waiting times for equipment assessments across health and social care

Waiting times for assessments for essential equipment are not capped, and there are widespread lengthy delays – families can wait months, sometimes years before their child is prescribed the equipment they need.  This leaves disabled children living in pain or at risk of injury and their families in constant anxiety.  They simply can’t wait.

FIX FOUR: Ensure every disabled child is counted

Disability registers are failing.  Without an accurate measure, health and social care services cannot budget to meet the need.  Local authorities must put in place an accurate way to measure the number of disabled children to ensure that no child is invisible.