Currently, if a loved one dies in the care of the NHS, the state conducts an inquest to establish exactly what happened. Often, however, the health authorities are provided expert legal guidance, while the families of victims get nothing.
On the 4th of July, 2013, 18-year-old Connor Sparrowhawk drowned in an NHS bathtub.
Connor, who had autism and epilepsy, was a happy kid growing up, with a love of cheesy jokes and an infectious laugh. It was such a defining characteristic that his mum, Oxford University researcher Dr Sara Ryan, nicknamed him "LB", for "Laughing Boy".
But when he turned 18, Connor started to become unhappy and agitated, and at times aggressive. He punched his learning assistant and was excluded from school. Running low on options, his family took him to get specialist help at Slade House Assessment and Treatment Centre in Oxford, a short-term residential facility run by Southern Health NHS Foundation Trust.
As a legal adult who could choose his own activities, Connor spent much of his time in the centre watching DVDs and taking long baths. His family grew frustrated, feeling that Connor was making little progress. They also felt that staff weren't paying enough attention to the fact that Connor was epileptic, and, Sara believed, had experienced at least one seizure that had gone unnoticed since arriving at the centre. About four months after he entered the unit, Connor was found unconscious in the bath and died in A&E. The postmortem concluded he had drowned, probably after suffering an epileptic fit.
When someone dies unexpectedly in this way, the state conducts an inquest to establish exactly what happened. Unlike court cases, inquests are supposed to be inquisitorial rather than adversarial: fact-finding exercises in which lessons are learned but no one is punished. So Sara was surprised to find out that Southern Health would be represented at Connor's inquest by an expert legal team paid out of government funds. If Sara wanted legal representation, she would almost certainly have to finance it herself.
"It's frankly scandalous," says Dexter Dias, a leading QC who has represented families at inquests for over 20 years. He recently acted for the family of Cherry Groce, the victim of an unprovoked police shooting which sparked the Brixton riots, after a petition signed by over 100,000 people succeeded in securing legal aid for her inquest. Mr Dias says that inquests are consistently the most "forensically difficult" cases he comes up against as a lawyer – more so than murder or even terrorism trials: "The idea that untutored, bereaved families should either conduct the case themselves or pay out of their own pocket is a travesty."
Through their campaign, Justice for LB, Connor's family managed to fundraise £26,000: enough to pay a solicitor, but not their two barristers, who worked pro bono. Sara believes that their lawyers had a big impact on how the inquest, which finally concluded last week, was conducted.
For example: the coroner was initially undecided about whether a jury should be present at the final hearing. Though an independent report found that Connor's death was preventable and Slade House was subsequently shut down after failing an inspection, Sara says that at the pre-inquest review the Trust's lawyers still argued that Connor died of natural causes and that he had not actually been detained in the unit, so a jury would be unnecessary.
The first argument – that a death by drowning was not unnatural – was immediately dismissed by the coroner. But the second was less clear cut. "The argument about whether or not Connor had been detained was relentless," says Sara. "It probably took our barrister about 20 minutes of careful arguing, holding up case law and all the rest of it, for the coroner to eventually accept that he was. And we would never have been able to do it on our own." A jury inquest was granted.
For Mr Dias, this kind of legal wrangling is to be expected at a state death inquest. He says that families initially come to him relieved that their relative's death will finally be investigated. "I have to advise them, time and again, you must understand that this will be terribly, terribly difficult," he says. "Because when something like that happens, rather than throwing open its doors to expose systemic wrongdoing and individual and collective failures, the state closes the doors and you have to bash them open."
Rosi Reed, an acquaintance of Sara's, knows this all too well. In 2012 her son Nico Reed, who was 23 years old at the time, also died in a residential unit which was run by Southern Health. Nico had a form of athetoid cerebral palsy; one night he was sick, and choked during the night between staff rounds. Guidelines suggested these should have taken place every 20 minutes, but Nico had not been checked on for at least 45 minutes when he was found.
The Reed family spent all their savings and took on debt to pay for lawyers at Nico's inquest, but ran out of money to pay their legal team before it was over and had to pick which days they most wanted their solicitor in court. The Trust, by contrast, had legal representation throughout; Rosi says they pushed for a verdict of natural causes. On her blog, Justice for Nico, Rosi wrote of the lawyers at the hearing: "It wasn't just that we didn't understand what they were saying, it was the way that it made us feel; inadequate, stupid, illiterate and very far out of our depth." She went on to write that the inquest "was like being bludgeoned by emotions too terrible to bear, hour after hour and day after day. Don't tell me the Southern Health legal team were going through the same thing."
The coroner did ultimately rule that Nico's death was preventable; the family did not get the verdict of contributory neglect they had hoped for. Without a lawyer, Rosi is doubtful they would have achieved as much as they did.
If an inquest can't officially punish anyone or send them to jail, why is so much at stake? On an emotional level the answer is obvious; families want answers about exactly how and why their relative died, while staff want to be vindicated. But there are also far-reaching practical implications. The inquest verdict can comprise a list of one or more simple causes (natural causes, dependence on drugs, etc.) – or it could be a more complex and lengthy "narrative verdict", which might note deficiencies in state care which led to the death.
At the most extreme end, such a verdict could cause the Crown Prosecution Service to go back and revisit a decision not to prosecute the institution or individuals involved, or form the basis for criminal negligence litigation. Far more commonly, it results in the coroner issuing a Preventing Future Deaths, or "Regulation 28", report, requiring the responsible organisation make changes so that the same thing doesn't happen again. The organisation must by law respond within 56 days, stating what remedial action it plans to take.
A critical inquest verdict, then, could cause reputational damage to an institution and its staff, force them to spend additional (often scarce) resources reforming their systems, and in extreme circumstances indirectly result in a criminal prosecution. But it could also save lives. "All the families that we work with say, 'What we want more than anything is to try and stop this happening again, to prevent another family going through a similar experience,'" says Deborah Coles, co-director of the charity INQUEST. "In my experience, properly conducted inquests where families are represented can play a very, very important preventative role."
This is what Connor's family were fighting for, and what they ultimately achieved at the conclusion of his gruelling two-week-long inquest on Friday. The jury found that neglect contributed to Connor's death; the coroner will issue a Regulation 28 report and Southern Health will have to make major changes to their operations. Without legal representation for the family, it's not at all clear this verdict would have been reached.
In a cruel irony, nowhere is the life-saving potential of such an inquest verdict clearer than in the circumstances of Connor Sparrowhawk's own death. On the penultimate day of his inquest it emerged that, in 2006, another patient had drowned in the same unit as Connor, also due to having a seizure while bathing unsupervised. The coroner concluded he died of natural causes.
In response to the issues raised in this article, a spokesperson for Southern Health said: "The Trust does not usually instruct legal representation at inquests unless the family is represented," and concerning the arguments used at Connor's pre-inquest reviews: "the Trust was not suggesting that Connor's death was a natural one in the ordinary sense of the term [but only] in relation to the legal framework". Regarding Nico Reed's death, they said: "Whilst the Coroner stated that it is possible that NR [Nico Reed] could have been saved if he had been checked upon earlier, he said this was bound to be speculation."
Last week, Katrina Percy, Southern Health Chief Executive, put out a press release that said: "I am deeply sorry that Connor died whilst in our care. Connor needed our support. We did not keep him safe and his death was preventable. We have thoroughly investigated the circumstances surrounding Connor's death and continue to work hard to help ensure that this doesn't happen again."
There are two main arguments used by policy-makers against reforming the UK's inquest system. The first is that inquests are informal affairs and coroners are capable of conducting thorough independent investigations regardless of who has legal representation. William Armstrong OBE, a former coroner of 18 years, disagrees. "Representation at inquests is profoundly, extremely useful and helpful," he says. "When I was a coroner it was always reassuring for me to know that a family was effectively represented by an advocate who could ask questions on their behalf, who understands what the Coroners Rules allow and don't allow, and ensures that the family's voice is heard."
The second argument revolves around money. The Ministry of Justice is quick to argue that public funding for family legal representation is available in exceptional circumstances, and that automatic funding for everyone would be too expensive. But, Ms Coles points out, exceptional funding is almost impossible to access – for a start, you have to provide detailed financial statements from even extended family members. "It's unbelievably intrusive," she says. "Many families retract the application because they just can't stand it." And as for the latter problem, the issue is not so much lack of universal funding for families as what Ms Coles describes as the "inequality of arms" between them and the state. If the right of public bodies to legal representation at inquests were removed, the parties would at least be on an even footing, and the system would actually cost the taxpayer less.
The wheels of justice may slowly be turning with regard to inquest funding for families. At a widely reported High Court judicial review hearing in March, Mr Justice Green ruled that the current guidance on legal aid funding for families at inquests is misleading and unlawful. At this stage, though, it's unclear how much will change as a result – it all depends on policy decisions made in the coming months and years by the newly-elected Conservative government.
For Connor's family, the verdict they achieved on Friday doesn't bring back their brother and son, but it does bring them one step closer towards achieving justice and improving the treatment of disabled people in the UK. "It has been a long and tortuous battle to get this far," they wrote in a statement last week. "Families should not have to fight for justice and accountability from the NHS."
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