Newlife publishes damning report into failings in provision of specialist equipment
Newlife the Charity for Disabled Children has published an alarming report which exposes a number of major and unlawful failings in the provision of specialist equipment to some of the UK’s most vulnerable children. The report, published on 26 November sends an urgent message to government to help those children whose lives are at risk because they do not have the specialist equipment they need.
Safespaces stand alongside the British Healthcare Trades Association in showing their support with this campaign.
Report: Equipment Crisis for Disabled Children
DOWNLOAD THE EQUIPMENT CRISIS REPORT – launched at 11am on 26 November 2018
Launched at the House of Commons, the charity has documented how children are being deprived of specialist equipment like walking frames, specialist car seats and beds, and has published a practical four-point-plan to fix it.
“All children have the right to be safe and free from pain. They have a right to learn and a right to reach their potential regardless of diagnosis or disability.”
…explains Mrs Sheila Brown, OBE, Newlife CEO, and mum to two disabled children herself. She continues:
“But every single day severely disabled and terminally ill children are denied their fundamental rights because existing policies preclude them, or decisions are made based on frugality rather than health and necessity. The result is children are left to suffer in pain, their safety compromised, isolated from the world.”
The report highlights the widespread problems and there potential to be challenged on legal grounds, citing alarming statistics such as:
Newlife and their supporters are calling on national and individual local statutory services to work with them to put in place a four-point-plan #FixTheFour 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 children 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.
CASE STUDY – SPECIALIST SAFE ROOMS AND SAFE BEDS
Removing Barriers: Children in crisis can’t get specialist equipment quickly enough
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)