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.
One-year-old Tiffany Benjamin-McFarlene from Wolverhampton spent most of her young life trapped in hospital.
Tiffany had two severe brain bleeds at birth and is unable to keep her own airways clear. She has reflux so it’s vital she’s kept at just the right angle at all times, otherwise she chokes and breathes fluid into her lungs. She is fed by tube and needs oxygen and daily physio on her chest.
A deterioration in her condition meant she was admitted to hospital for six months, but once she was well enough to be discharged her family couldn’t take her home because they didn’t have a specialist cot – and were told it would take months on the NHS Wolverhampton waiting list before a cot could become available.
This cot is essential as it keeps Tiffany at just the right angle at night to stop her choking. Specialist cots and beds of this type are not readily available and never in an emergency.
Mum, Stacey, said: “We don’t know how long we have with Tiffany so every day is precious and this meant she would be in hospital for months longer that she needed to be when she could be at home with us.
“Tiffany’s occupational Therapist told us to contact Newlife for an emergency cot because she couldn’t provide one quickly enough. The NHS should be able to provide her with everything she needs to keep her safe – and out of hospital where she was taking up a bed that could be used by someone else.
“There is definitely a need for a NHS loan service like the one provided by Newlife. These are basic, essential items. Children and their families shouldn’t have to wait.
“Having what your child needs readily available on the NHS as a loan while you wait for permanent provision would make life so much easier.”
Newlife provided a safe specialist cot for Tiffany, but they are not readily available on the NHS and never in an emergency.
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.
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.”
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.”
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.