Tamsin and Nick Sapwell have five children, university student Thomas, 14-year-old Molly, 10-year-old Rose and three-year-old Florence who shares a bedroom with her two-year-old brother Benjamin. About a year ago, Tamsin and Nick began to suspect that there was something seriously wrong with their little boy – his extreme behaviour was beyond anything they had experienced with their other children so they began to seek advice. After an appointment with their community paediatrician, they were again referred for a multidisciplinary assessment and expect to get confirmation that Benjamin has severe Autism.
Benjamin cannot speak – he finds the world around him incredibly overwhelming and is unable to express this in any way other than anger, violently lashing out at his mother as she desperately tries to comfort him and banging his head repeatedly on any hard surface he can get to. He doesn’t sleep, waking the whole family, especially little Florence. He will climb on the furniture and on the window sill in their bedroom and will even climb on Florence herself. He has become trapped in the gap between his bed and the wall and will repeatedly bang his head on the headboard. His family were so desperate to keep their son safe that they started to explore the possibility of getting him a special bed called a Safespace, but the process of accessing one through their Disabled Facilities Grant would take months and months – in the meantime, Benjamin was in danger and his family were at crisis point.
Mum Tamsin said: “When Benjamin is having a meltdown, the only thing I can do to stop him from hurting himself is to hold him and try and comfort him – but this seems to have the opposite effect, making him more violent. We desperately needed somewhere safe for him to go when he is having a meltdown – something that makes him feel safe and secure.”
Benjamin has had a Safespace Voyager through Newlife’s Emergency Loan Service – and the difference has been life changing.
“I can’t begin to explain how much this bed has changed things for us – Benjamin is definitely sleeping better but even when he does wake during the night I’m not panicking because I know he is safe and can’t hurt himself.”
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.”
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.