Connors mother and stepfather, Richard Huggins. Photograph: Joel Redman for the Guardian
After two years spent negotiating what form the inquest would take, proceedings finally began in Oxford last October. Sara had already discovered, to her horror, that Connor had been left alone in the bath. But it was only in court that they learned the door had also been locked. Even then, lawyers for Southern Health quibbled over whether the door was actually locked, despite a nurse testifying she had used her key to open the door.
That was one of those moments which showed you what an arsehole the British legal system is, Richard says, raising his voice. Two barristers representing members of staff stood up and said, Oh nononono, just because she opened a door with a key doesnt mean it was locked. Hes lost for words. I mean, what sort of ludicrousness is that?
In court, the counsel for Southern Health made capital out of the fact that Sara had called a member of staff Dr Crapshite on her blog, suggesting that her attitude might have affected the way staff cared for Connor.
In interviews conducted after his death, Sara was referred to by a member of staff as toxic. These interviews were submitted as evidence at the inquest, Sara tells me. Under one section headed My Relationship with Dr Ryan, a student nurse wrote, I was really scared of her, I saw her shout at a consultant. But when the same nurse gave evidence, she retracted it: No, I wasnt scared of her. She was a mother who cared for her child. So I reckon they were coaxed into writing this crap.
On the fourth day of the inquest, the counsel for Southern Health disclosed that, seven years before Connors death (when the unit was under different management), another patient had died in the same bath. This came out only after it was raised by a former member of staff. The police had carried out a two-year investigation into Connors death and theyd never told them that, Richard says. Three of the staff who had already given evidence had been working there when this happened, and hadnt mentioned it.
A document disclosed at the inquest showed an action plan had been written following an incident at Slade House in 2004, stating the baths should be removed because they were therapeutic and too deep hence not fit for purpose. This was two years before the first death, nine years before Connors.
If somebody dies in a bath, you act, dont you? Sara says. If theyd paid attention to the first man who died and decided the baths were too high, Connor would be alive. When asked by the Guardian why they had not told Connors family about this previous death, Southern Health said the man did not suffer from epilepsy and had not drowned and was therefore not relevant.
Far from accepting responsibility, a barrister representing a member of staff went on the attack, suggesting Sara had been negligent in not explicitly stating that her son had to be watched in the bath. They said, why didnt we tell them? And we said, anybody knows that you dont leave somebody with epilepsy in the bath alone. It would have been like asking a schoolteacher taking children on a trip not to let them loose on a motorway. We were always in and out when he was having a bath, the door was always open.
Even now the family dont know how long Connor was left alone. In the 999 call, the nurse initially suggested five minutes, then said she was unsure. Yet even Southern Healths own recorded observations suggest he had been in there since 8.30am and was checked on at 9am, and then again at 9.15am when he was found unconscious. On the recording, the nurse says quite clearly, we dont know how long hes been in the bath. My view is that he died in the bath, and they didnt notice. And then they found him under the water, Richard says.
Sara is trying to remember the positives that emerged from the inquest. There were two nice things that happened. One of Connors two main nurses asked if she could say something to us before she gave evidence. She turned round and said, I just want to say sorry, I let you down totally. That was such a relief.
The other nice thing, she says, was when a staff nurse talked about Connor the boy, rather than Connor the dead service user. He said Connor had introduced a sense of camaraderie between the patients and they had a bit of a banter of an evening. They really took the piss out of the staff. They were subversive, and they hung out together and watched films. It meant a lot to her, because until then she had never heard staff talk about the Connor his parents knew and loved.
It was while they were waiting for Connors inquest to take place, in 2014, that Richard and Sara started to think about all the other people who might have died in similar situations. They met with David Nicholson, the then chief executive of NHS England. We said, can you review the deaths that have happened to see how Southern Health has responded to them? I dont think anybody expected the findings to be what they are.
Look beyond the stark headline numbers of 2015s Mazars report and the detail is just as shocking. Of 10,306 deaths of service users between April 2011 and March 2015, 722 were categorised as unexpected; of these only 30% were investigated. Sixty-four per cent of investigations did not involve the family. Most shocking of all, less than 1% of deaths in learning disability services were investigated (compared with 60% of unexpected deaths in adult mental health services). Southern Health came in for severe criticism: The failure to bring about a sustained improvement in the identification of unexpected death and in the quality and timeliness of reports into those deaths is a failure of leadership and government.
In December, Sara called for the chief executive of Southern Health, Katrina Percy, to resign. The trust acknowledged the failings documented in the Mazars report: We fully accept that our processes for reporting and investigating deaths of people with learning disabilities and mental health needs were not always as good as they should have been. But it also defended its record, stating that, National data on mortality rates confirms that the Trust is not an outlier and its rate of investigations is in line with that of other NHS organisations. (As if that makes it all right! Sara says.)
Percy made a public apology: Connor needed our support. We did not keep him safe and his death was preventable. She added that many changes had been made since Connor died. Percy is still in post.
For Sara, the Mazars report crystallised what she had always suspected. Its a eugenics thing, she says. Theres no value attached to their lives.
Bess the jack russell doesnt so much bark this time as howl.
Look, Richard says, they never set out to cause a commotion. If there had been a very different approach from day one, if thered been a culture of saying, lets sit down and see how we can sort this out, none of this would have happened. We werent confrontational from the beginning.
I always was, Sara corrects him.
No, Richard says quietly. We werent confrontational, we just wanted stuff done for Connor. We werent fighting just to fight.
Sara says it was an amazing moment, hearing Connor and Mazars and Southern Health being debated in the Commons at the end of last year. Now she believes many of the professionals involved have regrets for the wrong reasons. People have said to me, if Southern Health had just behaved a bit better, none of this would have come out, as if its a bit more problematic than its worth. I think a lot of people in health and social care still think, I dont want to lose my job over a bunch of learning disabled people, thank you very much. And yet Connor was better than all of us in many ways his generosity of spirit. No guile, no deceit, no lying, no avarice. He didnt want anything; he just wanted to be.
As well as a class action, Sara is looking at the possibility of bringing a corporate manslaughter charge against Southern Health. After Connors death, she was told that the trust could not be charged with this because the bar for gross negligence had not been met. Now, lawyers are taking another look. Were arguing that it was met, because of the earlier death in the bath.
In December, Jeremy Hunt promised a study into mortality rates of people with learning disabilities across the NHS, and to publish the number of avoidable deaths within each NHS trust, from this year. But as yet there has been no confirmation that there will even be an investigation into the 700-plus deaths identified by the Mazars report. Charlotte Haworth Hird, a lawyer representing Connors family, says: It is no good simply saying that investigation procedures will be different in future, if indeed they will. There needs to be effective investigation of those deaths that have already happened, and those responsible need to be held to account.
Three years on, Sara and Richard have called for a much wider public inquiry, into all those avoidable deaths. Its hard to know where they get the energy from. Sara says shes a changed person and not in a way that she likes.
Rage is quite new to me. Id have to be pushed into a rage before, she says. I was hugely optimistic.
But you always had a huge sense of justice, Richard says, a bit like Connor. A sense of fairness.
She nods. Yes, she says, but this is different. Rage is my daily business now.