On Monday the inquest into the death of 18-year-old Connor Sparrowhawk will begin at Oxford coroner’s court.
Connor, who had learning disabilities and autism, died in July 2013. He drowned in the bath after an epileptic seizure. At the time, he was a patient in a learning disability unit run by Southern Health NHS Trust. The trust initially attributed Connor’s death to ‘natural causes’ but an independent investigation later found that his death was preventable.
For Connor’s family, the inquest marks the latest turn in a two-year “battle” that has “completely transformed” their view of health and social services.
‘Trust smashed to pieces’
“That feeling that the NHS is this comforting, safe space that we’re all entitled to call upon has just gone out the window. We’ve also had issues with other public bodies, like the local authority. Our trust has been smashed to pieces,” says Dr Sara Ryan, Connor’s mother.
Dr Ryan, a senior researcher on disability issues, has used her blog to document her experiences of statutory services in the two years since her son’s death.
Ryan says she’s been shocked at the lack of support for families whose loved ones die unexpectedly while under NHS care. Both the independent investigation into Connor’s death, and next week’s Article 2 inquest, were only secured by the family fighting for them with the help of pro bono legal support and “a really strong human rights team”, she says.
For Ryan, a key turning point was being contacted by a barrister in the days after Connor’s death. The barrister advised her to request all of her son’s medical records and told her to contact Inquest, a charity that provides support to bereaved families.
Without the barrister’s advice, says Ryan, the family “wouldn’t have had a clue” what to do and it’s likely that the initial finding that Connor died of ‘natural causes’ would have been the final word on her son’s death. It is a situation Ryan believes other families whose relatives die unexpectedly in care shouldn’t have to face.
“There should be an automatic independent investigation that is actually independent. Families should also be given an NHS liaison person, like the police provide to bereaved families, to help them negotiate their way through the system,” she says.
“It would just be someone to help advise you and take away all the extra bits so that the family can get on with trying to make sense of the loss of their daughter or their son, sister or brother…You just have no idea what you’re getting into with something like this.”
Justice for LB
Yet there has been one network that Ryan says has been a “remarkable” support – a social media campaign fighting for disabled people’s rights that was launched in the wake of Connor’s death.
The ‘Justice for LB’ campaign (Connor’s nickname was ‘LB’ or laughing boy) has produced a series of online campaigns, a video tribute to Connor and a ‘justice quilt’ that has been exhibited across the country. It has also led to crowdsourced draft legislation – the ‘LB Bill’ – which sets out proposed reforms to improve care for disabled people.
The campaign has had impact too. It was influential in ex-care minister Norman Lamb’s decision to launch a green paper on reforming learning disability care. The LB Bill is referenced in both the green paper consultation, which the government is expected to formally respond to later this month, and the Law Commission’s current consultation on reforms to deprivation of liberty legislation.
Campaign ‘for all learning disabled people’
“We feel heartened by the way people have consistently demonstrated their care over what has happened, not just with Connor but with all learning disabled people, because the campaign was never just about Connor,” says Ryan.
“When you look at the slow wheels of justice and then you compare it to what the campaign has achieved with no budget it is astonishing. I think it has helped raised the profile of people with learning disability more than how many thousands of pounds have been spent on various government initiatives and programmes over the years. I mean the post-Winterbourne View stuff, look at the money thrown at that for so little progress.”
This is a reference to the government’s Transforming Care programme to improve support end the use of unnecessary hospital care for people with learning disabilities or autism and additional mental health problems. Latest figures show that the number of people within this group who are in hospital has been unchanged for six months.
‘Erased from everyday life’
“The campaign’s managed to produce stuff that’s colourful and fun and interesting and it’s all freely available for people to use if they want to…It’s managed to capture the humanity and the value of this group of people who are so often completely erased from everyday life.”
In a statement, Katrina Percy, Chief Executive of Southern Health NHS Foundation Trust, said: “We are deeply sorry that Connor Sparrowhawk died while in our care two years ago. I would like to reiterate our unreserved apologies to his family for his preventable death. It would be inappropriate for Southern Health to comment further before the conclusion of the inquest into his death.”