The family of a four-year-old boy who died days after being discharged from hospital is campaigning for improvements to be made to the care of patients with autism.
A petition for Harry’s Law, named after Harry Procko, has secured more than 15,000 signatures and urges the government to implement a raft of changes to the way children with autism are treated in hospitals across the country.
The four-year-old, of St Ann’s, had autism and was taken to hospital in June 20, 2014, with gastroenteritis but died from dehydration three days later after collapsing at home.
The coroner who oversaw the inquest into the child’s death said the Queen’s Medical Centre was not responsible, but found there had been shortcomings in his care.
Harry’s family received a five-figure out-of-court settlement from Nottingham University Hospitals (NUH) NHS Trust, which manages the hospital, in June last year, which his father Richard Clements said formed an “admission of liability”.
Mr Clements believes that his family’s experience would have been different if there had been measures in place to support child patients with autism.
The 50-year-old has developed Harry’s Law – made up of 13 proposals – in a bid to improve patient care for children with autism nationally.
Suggestions include giving autistic children a different colour identity bracelet to highlight their special needs, and to have at least one doctor and nurse trained in autism awareness on duty at all times.
The petition is likely to receive a response from the government as it has secured more than 10,000 signatures, but Mr Clements hopes it will hit the 100,000 mark so that it can be debated in Parliament.
He said: “We just need to get this through. At the very least it will make life more comfortable for special needs children. The best it can do is change lives.
“We have to start somewhere and the children are more vulnerable than the adults. Maybe if we start with children we can extend it to adults.”
Chris Leslie, Labour MP for Nottingham East, has been supporting the campaign Mr Clements with his campaign.
He said: “There are some really serious lessons that the NHS have got to learn from this case to help other children whose autism make it difficult for them to communicate with both their parents and the health professionals, who can sometimes misunderstand their condition.
“I’m going to keep pushing policy makers nationally to take this campaign seriously, and properly respond to some of the suggestions for improvement that I think we should have in emergency departments nationwide.”
Dr Stephen Fowlie, medical director at NUH, said: “We have learnt from Harry’s experience, and that of other patients and their families, and made changes to better meet the needs of patients with autism.
“We continue to work with Autism East Midlands to train staff to help them adapt their care for patients – including children – with autism.
“We have changed our education programmes for children’s doctors and nurses to improve how we care for children with complex needs, including those with autism.”
To sign the petition, click here
Proposals being made under Harry’s law:
1: On arrival to A&E status elevated to level 2 so less waiting time to cut down stress levels
2: Each children’s department to have at least one Dr and nurse trained in autism awareness on duty at all times and they be assigned to specific children with special needs and that they have periodic updated training
3: Experienced play workers to be made more readily available
4: Quicker transitions from one department to the next
5: Side rooms made available to cut stress levels
6: Notes and identity bracelets coloured as a clear indicator of special needs
7: Parents always to be approached first
8: Any treatments or tests needed to be done swiftly
9: Do not leave autistic children unattended at any time
10: Make sure any appropriate treatments or issues are dealt with before discharge
11: Make sure parents have all relevant information during the stay in hospital and on after care on discharge
12: Make doctors aware and accountable for their own actions
13: Give any willing parents a questionnaire so that the hospitals can learn from them