Newlife are calling on the Government to urgently introduce new measures to improve the provision of equipment for disabled children, saying that children’s safety is being compromised due to “major and unlawful failings” of specialist equipment providers in the UK.
The report was launched today alongside the charity’s #FixTheFour campaign, which calls on the government to cease the use of blanket bans for rationing equipment, establish an emergency equipment response service, introduce a maximum waiting time, and ensure every disabled child is counted.
“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,” said Sheila Brown, Newlife’s CEO.
“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.”
Fixing these four points would help children like three-year-old Malachi, who almost choked to death in his mother’s lap in the back of a taxi as his family looked on, unable to help – as his local authority would not provide the family with a protective car seat.
Malachi lives with brain damage and is unable to support his own head: if his head is not supported, mucus builds up in his throat, which results in him choking and vomiting. His mum told Newlife: “During one journey, he stopped breathing. He’d been sick and the thick secretions completely blocked his airway. I thought he was going to die.”
Sheila Brown said: “A specialist car seat is not a luxury item. It tilts to stop children like Malachi who have compromised airways, from choking to death. They have side and head supports so when a child has a seizure they won’t bang their head, causing them even more pain and distress. But specialist car seats can cost up to £3500 which is far beyond many family budgets.
“The government needs to put an end to blanket bans and the ‘we don’t do’ mindset – Malachi is just one child who almost died because of it. Every local authority and health service must have an identified, transparent process for reviewing equipment requests.”Get your copy of UNITE Magazine