Kidnapped: In England

Editorial Note: The post below is by Simon Hattenstone and appeared in the Guardian on April 2nd. It fits into the Kidnapped sequence and allows us to draw attention to the #JusticeforLB campaign (Laughing Boy). Once again the point is this could be you or me, could be cardiac or orthopedic or any branch of medicine. We need an up to date version of Buffy Sainte Marie’s Universal Soldier.

Sara Ryan is a sharp, funny woman with short spiky hair and an acute bullshit detector. She used to laugh all the time, as did her son, Connor Sparrowhawk. She and her husband, Richard Huggins sit in the kitchen of their home in Oxford, the table heaped with biscuits and chocolate, and tell me stories about the son they nicknamed Laughing Boy.

Connor was epileptic, autistic and had learning disabilities. He was also very funny – sometimes knowingly, sometimes not. The thing about Connor, his parents say, is that he had no filter. There was the time they went camping, with Connor and his siblings. “One night, the people who were camping next to us came around. And the older man had a beautiful, much younger girlfriend. Connor spent the whole evening talking about paedophiles. We all tried to smile it off, but when we got up in the morning they’d gone.”

He could get things very wrong. Take the time they were staying on a farm and he became convinced the farmer was running an international crime syndicate. “He decided he was wanted by Interpol. He’d march round, raging about the farmer being a wanted criminal.” How did the farmer react? “Oh, they were bezzy mates by the end, weren’t they?” Sara says.

He was handsome, with pop-star hair and a natural stylishness. He was close to his siblings, who adored him

He had a strong sense of injustice, Richard adds, such faith in the law. “He would rant and rave about how we were infringing his human rights. He’d always be slapping injunctions on us.” What about? “Oh, you know,” Sara says, trying to keep a straight face, “cleaning, washing up.”

Three years ago, aged 18, Connor drowned in a bath at Slade House, a residential unit run by Southern Health, an NHS foundation trust. His parents had brought him there a few months before, after he became aggressive and violent, and they found themselves unable to cope. “It felt as if we were buying a bit of time for everyone,” Richard says. “These guys were professionals, Connor would get some support. We thought it was a terrible thing to have to do, but it was fair. Within a few days we thought the place wasn’t very good. But we never, ever thought he wouldn’t come out.”

In October last year, a jury delivered a damning verdict, that serious failings and neglect had contributed to Connor’s death. Two months later, an astonishing report by audit firm Mazars found that Southern Health had failed to properly investigate the deaths of more than 700 people with learning disabilities or mental health problems, over a four-year period, from 2011 to 2015.

In a statement to the Commons on 10 December last year, health secretary Jeremy Hunt said that the Mazars report had raised serious concerns about Southern Health, which cares for about 45,000 people in Hampshire, Dorset, Wiltshire, Oxfordshire and Buckinghamshire. “Our hearts go out to the families of those affected,” he said. “More than anything, they want to know that the NHS learns from tragedies such as what happened to Connor Sparrowhawk, and that is something we patently fail to do on too many occasions… There is an urgent need to improve the investigation of, and learning from, the estimated 200 avoidable deaths we have every week across the system.”

Connor is still everywhere in the family home. His paintings are on the wall, there are photographs of him and his siblings on the mantelpiece, literature about the case is stacked in piles. The night Connor died, Sara says, the house became more a campaigning centre than a home.

But 100 days on from the Mazars report, she is beginning to think she was naive. “We thought the report would become a national priority for action. And nothing has happened.” She is looking at the possibility of bringing a class action, with other families, against Southern Health, one of the largest mental health and learning disability trusts in England.

***

Connor Sparrowhawk was close to his three brothers and his sister, who adored him. He went to a small special school, but didn’t like to consider himself as having special needs. He told everybody he was going to run his own business and have a beautiful girlfriend. He was handsome, with pop-star hair and a natural stylishness.

Both Sara and Richard are academics: she is a sociologist who specialises in autism and learning disabilities, he is a political scientist. Connor was a kind and loving child, but at 18 he became aggressive and unhappy. “Maybe he was beginning to get a sense that his life was very different from his brothers’ and his sister’s,” Sara says. “They were leaving home, going to university, and nothing like that was happening to him. No job, no prospects, no qualifications, nothing. He was just surrounded by professionals talking about his future. It was as if his social work team had forgotten that there was a boy, or young man, attached to their care budget. There was no one asking, ‘What do you want to be?’”

Connor went on a school trip to Devon and had to be picked up early because he was out of control. “He was shouting and threatening and doing a bit of pushing, but he was ineffectual,” Richard says.

Sara shakes her head, disagreeing. “You can’t really say that,” she says. “When he did lash out, he was incredibly strong.”

Things reached a head when Connor punched a teaching assistant in the face. “He got suspended. Then he started shoving me,” Sara says.

“Sara had always been sacrosanct,” Richard says. For the first time in Connor’s life, they did not know how to cope. His younger brother Tom, with whom he shared a room, became anxious, and Tom’s friends stopped coming round.

“I was worried that he was going to hurt someone,” Sara says. “He had no inhibitions at all. He’d lost it.” This all happened over a period of weeks. “We’d been ringing social services in tears, saying, what can we do? They said, call the GP if you have trouble over the weekend. They were so unhelpful. We were almost under siege, weren’t we?” She looks at Richard. “Walking on eggshells.”

It was then that a friend told them about Slade House, a five-minute drive away, and well equipped with psychiatrists, occupational therapists, psychologists, dietitians and specialist nurses; they were told that Connor would still be able to do some school activities there. Sara talks about taking him there. Connor did not know where he was going, and it felt like a betrayal. But they were desperate.

Within a few days of him being admitted to Slade House’s short-term assessment and treatment team unit, they had become concerned. Yes, Connor was 18, technically an adult, but they couldn’t understand why the trust was so aggressive about protecting his privacy. “They said, ‘We can’t be told about his medical records without his permission, because he’s an adult.’ We were like, he can’t even cross the road by himself.”

Richard remembers the first time he went to visit in the evening, and the staff told him Connor had just been put to bed. “It was 6pm on a Saturday night!” Another time he was left waiting outside for three-quarters of an hour. “They just didn’t answer the bell, then said it was broken. But the nurses’ station was right next to the door. We could see them.”

Once Sara arrived to find Connor had bitten his tongue. Her immediate thought was that he’d had an epileptic fit; but the psychiatrist had simply prescribed Bonjela. “I pitched up and said, ‘By the way, Connor’s had a seizure – you’d better act on this.’ ”

For some time before Connor was admitted, Sara had been writing a blog about him, called mydaftlife. There were too many funny stories, she says, not to get them down – and Connor loved being written about. “One blog was about getting on a bus after one of the terrorist scares,” she says. “He stood up and said, ‘Are there any terrorists on board? Please make yourself known to the driver!’”

But once he went into Slade House, the blogs became more serious, highlighting perceived inadequacies in Connor’s care. Sara gave the staff nicknames; one psychiatrist became Dr Crapshite.

After almost four months at the unit, Connor seemed calmer and was looking forward to returning home for good (a meeting had been planned to discuss this). Richard asked to visit him on the evening of 3 July 2013 (Connor had to consent, because he was 18). “He was very excited, gabbling, so I said, ‘Should I come round and see you?’ And he was like, ‘Yeah, yeah, yeah, yeah.’” But when Connor handed the phone back to the nurse, she said no, Connor didn’t want him to come. He is still exasperated talking about it today. “I said, ‘I can hear him saying yes, I’m coming round’ and thankfully I did. Because that was the last time I saw him.”

On Connor’s 107th day in care, Sara received a call from a psychiatrist at the unit. “She just said, ‘Oh hello, are you at work? It’s Connor, we found him unconscious in the bath. He’s on his way to the John Radcliffe hospital, we’ll ring you if there’s any change. Can you make your way there?’”

Sara says the psychiatrist was so casual, she didn’t think there was anything to worry about; after all, Connor had been taken to hospital a few times after epileptic seizures. “I was texting a couple of mates in the cab. I didn’t even ring you, did I?” she asks Richard. Then she began to worry and rang the unit back. “I said, ‘Was he breathing, was he conscious when he left?’ and they said, ‘Oh, they got him breathing.’”

Sara brushes away the tears, determined to get her words out. “But he was actually dead, wasn’t he? He was on some ventilator. The consultant who admitted him said, in his view, Connor was dead by the time the rescue people got there – but Southern Health didn’t even have the guts to say it was urgent.” At the inquest, it emerged that the tone of the 999 call made from Slade House was so vague, the operator initially said they would book Connor in for a four-hour ambulance response.

Over time, the family discovered how much had been kept from them, and that they had been watched. “It turns out Southern Health were monitoring us. The day after Connor died, they circulated a briefing about my blog,” Sara says. (She found this out only after requesting documents.) Under the heading Potential Media Interest – Background Briefing On Mother’s Blog, it states: “Learning Disabilities SU (service user) has been found not breathing in bath at STATT service in Oxfordshire. SU later died at John Radcliffe Hospital in Oxfordshire. Below is a summary of an online blog which we have been monitoring. The blog is written by the mother.”

It goes on to say: “Depending on the reason of death and the events leading up to the incident there may be some concerns raised by the Mother on Day 63 (21 May 2013) which she may revisit.” Sara explains: “That was the entry when I wrote, ‘I can’t believe he’s had a seizure and they’ve not noticed.’ Southern Health was monitoring the blog, and they didn’t pay any attention to the content of what I was writing. Yet as soon as Connor died, they circulated a briefing saying, this particular entry might become problematic.”

Two weeks after Connor’s death, Sara discovered that Southern Health had recorded his passing in the minutes of a board meeting published online: “A Serious Incident Requiring Investigation (SIRI) occurred in one of the Trust Learning Disability in-patient facilities, leading to the unexpected death of a service user. The postmortem indicates the user died of natural causes and early investigations indicate all appropriate systems and processes were in place and being followed leading up to the incident.” At the time, Sara did not think she could have been more angry, but she was wrong.

In September 2013, six weeks after Connor died, the Care Quality Commission visited Slade House, and failed it on all 10 counts it inspected: there was no battery in the defibrillator, no oxygen in the oxygen tank, no therapeutic interactions, there were traces of faeces in the furniture, medicines were out of date – and on it went. Three months later, in December 2013, the Statt unit was closed down. In May 2014, it was reported that the CQC had returned to Slade House and that its services had improved; baths, however, were now banned in favour of showers. The reason was never revealed to Connor’s family.

As soon as Connor died, people advised Sara and Richard to get in touch with the charity Inquest, to get hold of Connor’s records from Southern Health, to make sure the postmortem had been conducted correctly. “We were given a list of about 15 things and told you’ve got to do these this morning or you’ll be screwed, and it was true – we would have been.”

With a strong social support group, they were in a relatively good position to find out what had happened to their son – but even so it almost did for them. “There have been times, God knows, when both of us have thought, what is the point of carrying on?” Richard says. “I’ve got high blood pressure and am on antidepressants. I’ve lost part of my job.” Deborah Coles, director of Inquest, has worked with the family since Connor’s death. “Without their determination,” she says, “the truth would have been hidden from public scrutiny. What about all the Connors who don’t have families to speak out for them?”

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 doesn’t mean it was locked.’” He’s 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 wasn’t 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 Connor’s death, 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 Connor’s death and they’d never told them that,” Richard says. “Three of the staff who had already given evidence had been working there when this happened, and hadn’t 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 Connor’s.

“If somebody dies in a bath, you act, don’t you?” Sara says. “If they’d 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 Connor’s 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 didn’t we tell them? And we said, anybody knows that you don’t 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.”

One of Connor’s nurses said, ‘I want to say sorry, I let you down totally.’ That was such a relief

Even now the family don’t 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 Health’s 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 don’t know how long he’s been in the bath. My view is that he died in the bath, and they didn’t 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 Connor’s 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 Connor’s 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 don’t think anybody expected the findings to be what they are.”

Look beyond the stark headline numbers of 2015’s 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.

Look, Richard says, they never set out to cause a commotion. “If there had been a very different approach from day one, if there’d been a culture of saying, let’s sit down and see how we can sort this out, none of this would have happened. We weren’t confrontational from the beginning.”

Sara 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 it’s a bit more problematic than it’s worth. I think a lot of people in health and social care still think, ‘I don’t 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 didn’t 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 Connor’s 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. “We’re 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 Connor’s 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. It’s hard to know where they get the energy from. Sara says she’s a changed person – and not in a way that she likes.

“Rage is quite new to me. I’d 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.”