One-year-old Asher Watkin has two rare life threatening genetic conditions, one is so rare it affects only one in four million people. In his short life, he has already had to endure Medullary Thyroid Cancer which resulted in him having to have his thyroid gland removed. He suffers from regular chest infections because fluid can get onto his lungs and he will often need to go into hospital to have this treated. Asher also has musculoskeletal issues, severe global developmental delay and is visually impaired.
Asher has spent half of his young life waiting to receive essential disability equipment from his local health and social care services, including a wheelchair buggy. Most recently, Asher needed a specialist seat that would keep him in the right position to stop him from aspirating food and fluid. After a four month wait, the chair Asher has been provided, while fulfilling its functional purpose, leaves him screaming out because he is so uncomfortable. But his mum, Tara, was told by their Occupational Therapist that they wouldn’t provide more than one piece of equipment and that because the chair met the criteria for Asher’s condition, they wouldn’t consider an alternative.
“It’s so frustrating to see children pigeon holed in this way,” Tara says. “Just because this type of seat will work for one child with Asher’s condition, it doesn’t mean it will work for him. Comfort shouldn’t be compromised – after all if Asher is happier when feeding, he is safer when feeding.
What Asher really needed was a specialist seat called a P Pod – made a bit like a bean bag, the P Pod can have a seat moulded to the shape of a particular child, allowing them to be completely supported and comfortable. The seat also comes with a wheeled base so it can be easily moved from room to room, giving it a multi-purpose function.
While some local authorities do offer this kind of seating, Tara was told that Essex County Council don’t provide this kind of seating. Asher would have to make do with what he had been given, despite the discomfort it what causing.
It was at this point that Tara was told about Newlife the Charity for disabled Children. Realising the urgency of Asher’s situation, the charity was able to provide the P Pod he needed through its Emergency Equipment Loan service.
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.”
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.
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.