It’s official: Connor Sparrowhawk died of neglect

A black and white picture of Connor Sparrowhawk, a young white man with dark hair with a dark grey jacket, white shirt with no tie, while on the right is a part of his drawing of a red London bus.Yesterday, the verdict was delivered in the inquest into the death of Connor Sparrowhawk, known as Laughing Boy or LB, in the NHS learning disability unit at Slade House, Oxford, in July 2013. The jury’s narrative verdict was of death by drowning following an epileptic seizure in the bath, contributed to by neglect. Contributary factors included lack of clinical leadership on the unit, lack of adequate training or guidance regarding epilepsy, and “a very serious failing” in relation to Connor’s bathing arrangements. The Justice for LB website has published the full jury findings here and a statement from the family here. Channel 4 News featured him last night and the report was posted on YouTube; the report notes that the Southern Health NHS trust issued an apology (seconds after the verdict, almost as if it had been written in advance) but did not deliver it to the family, instead releasing it to the media and their website; the family only heard when a reporter told them. (More: Uncounted, Mark Neary [1], [2], George Julian.)

Connor died on 4th July 2013 after 107 days in the Short Term Assessment and Treatment Team (STATT) unit in Oxford, his home town. He had been placed there in March 2013 after he became “became withdrawn, distressed and eventually aggressive”, attacking staff who worked with him, and after a “town trip with [two of his regular support workers] was cut short through agitation it was obvious that LB was moving into a space that was becoming increasingly small. And pretty much unworkable”. Connor spent his first month there on a section 2 (a 28-day ‘assessment’ detention) and despite initial positive signs (such as a nurse discussing him going back to school), it became obvious that the care was not up to much — they were allowing him to spend hours in bed or in the bath because that was “his choice”, obstructing family visits (not even allowing his teenage younger brother to visit at all), and not involving his family in meetings or taking on board what they told him about their condition, in particular his epilepsy. As revealed at the inquest and in reports before that, the trust that ran Slade House were excessively concerned about publicity, in particular his mother’s blog, on which reports about his care appeared (this one got them particularly worked up) but which was always anonymous (we did not even know Connor’s name until after his death).

When I read of Connor’s death in 2013, I immediately knew the people responsible were going to be in big trouble, because a death in the bath from a seizure reflects such basic neglect. Anyone who knows a thing about epilepsy knows that people with active epilepsy cannot bathe alone, if at all; you don’t have to be a doctor to know this. His mother thought it so obvious that she did not remind them of this; at the inquest she compared it to telling teachers not to let the kids loose on a motorway during a school trip. The usual way of ensuring safety is to sit with your back to the person bathing and talk to them; popping in every 10 minutes is not enough, as it is possible to drown in that time. In many ways this was a simpler inquest than that of others who have died of neglect in NHS care, like Stephanie Bincliffe, Nico Reed and probably also Thomas Rawnsley, whose inquest is expected next year: while the inquest found failures of leadership and training, the neglect consisted of things that happened minutes before he drowned, not months. It was not a question of long-term neglect, of being in the wrong place altogether, such as the denial of physiotherapy which had kept Nico Reed healthy, of being shut in a room for seven years as in the case of Stephanie Bincliffe because the staff did not know what to do with her.

Inquests should, in my opinion, be allowed to consider these wider issues so that all human error that contributed to someone’s death in any kind of care or treatment context can be considered, not just what took place up to an hour or so before. Anyone, particularly professionals, involved in making major decisions about a disabled person’s care or living arrangements needs to understand that their life may depend on this decision, and that they may not have long to live in any case. There is also a need to provide Legal Aid to families at inquests where a cause of death is contested and neglect evident, especially as counsel is provided to not only the health trust but also the individuals involved in the care of the deceased. Currently, they have to pay for legal representation themselves, or raise money from supporters, because of the doctrine that an inquest is not an adversarial process. As Alex Cobham points out, parties accused of neglect will treat them as just that:

Southern Health’s legal team sought a set of directions to make it less likely the jury could return a verdict on neglect – including by arguing for a dictionary rather than a legal definition, which is an interesting court approach to say the least. The family’s QC, Paul Bowen, told the coroner, “so you would be directing the jury unlawfully Sir, that would benefit no-one”.

Of course, as the government has been cutting back legal aid even in adversarial areas of justice such as the family courts, it is unlikely that it will be provided for inquests under the present government. That funding is raised for legal representation in Thomas Rawnsley’s inquest is vital, because it is known that he suffered injury while in the unit where he suffered his last, fatal illness. There is still an appeal to cover legal fees which has raised only a quarter of its target; please donate if you can.

The charity Scope issued a press release yesterday, which was rather a bland bit of PR which entirely missed the point. Mark Atkinson, its chief executive, said:

Too many disabled people are still being admitted to hospitals and institutions and kept there too long - a shocking average of five years.

To avoid future tragedies like this we need to invest in first-rate social care that ensures people have the right, personalised support to live full and fulfilled lives within their local community.

This rather shows that they did not read about this case in much detail. Yes, many disabled people have been held in such units for years, but Connor had been there less than four months. The cases of long-term detention do not usually result in death, even if they result in prolonged separation from family and familiar surroundings, loss of liberty (often greater than their condition justifies), and the causes are sometimes down to the attitudes of those caring for them (psychiatrists in particular), but also to bureaucratic obstacles. This month we heard the third announcement this year that Josh Wills from Cornwall, who has been in a hospital unit in Birmingham for nearly three years, will be going home (to a bespoke placement with full-time carers) soon; he has missed two dates this year already, to the heartbreak of his family. They have no complaints about the care he has received in Birmingham, only the distance. Other relatives I speak to tell me of clinicians refusing contact for weeks, over-medicating, making promises of leave and then breaking them (in one case suggesting a weekend home visit for an event she wanted to go to, then deciding to change her medication instead, thereby cancelling the leave), and of apparently trying to provoke their relatives into meltdowns so as to extend their detention. Responsible clinicians have too much power and are not accountable; this is why such legislation as the LB Bill is needed. But LB’s death was down to simple neglect, which could have happened in any badly-run unit or hospital although neglect of a psychiatric patient’s physical health needs is a common problem (as a friend with bipolar disorder, asthma and hereditary breast cancer found out when she was a voluntary patient in Burnley last year and had an asthma attack).

It might be hoped that Southern Health might be forced to face up to its responsibility for Connor’s death, now that a CQC report, an independent report into Connor’s death and now an inquest has found that his death was preventable and contributed to by neglect, and exposed the poor leadership and communication that followed its takeover of the Ridgeway Partnership in 2013. We know that they have been more concerned about their reputation than about taking responsibility, initially claiming internally that Connor’s death was natural when it could not possibly have been, as well as obsessively monitoring Sara Ryan’s blog, describing her as “toxic” even while Connor was in the unit and as “intimidating” at the inquest, and using one delaying tactic after another to avoid exposure and accountability. The fact is that they took over a small NHS trust which had had its problems (including a similar death in 2006) and improved, and under their leadership things deteriorated again, leading to a wholly avoidable death. We must have no more evasive guff from their two vacuous talking heads, Katrina Percy and Lesley Stevens; no more lily-livered PR-mediated pre-written apologies, and no more boasting of what great care they offer. We need resignations, or sackings, and there must be serious career consequences for the management and clinicians whose incompetence led to Connor’s death. While nursing staff spoke highly of Connor and some apologised for their role in his death, their psychiatrist, Valerie Murphy, was observed blaming everyone but herself. That she was able to walk straight into another position, in Ireland, deserves investigation. She clearly got a good reference from Southern Health, despite being connected to a preventable death.

A graphic titled "The 3Dimensions of care and diagnostic overshadowing", showing a building called "Sloven Towers", a windy road leading to it, and three figures holding signs saying "Deny, Deceive, Delay".

As for what must change in care, there must be improvement in quality, not mere quantity. There is a danger of falling into “stable-door logic”, taking actions to prevent a precise repeat of a given disaster without considering its necessity or the consequences for people’s quality of life. After Nico Reed’s death, the inquest ruled that he could have been saved with 20-minute observations while he slept. This might have prevented him getting a good night’s sleep and does not address the matter that he needed physiotherapy to maintain his swallowing reflexes and prevent him choking, and had been receiving it in a previous setting but not where he was living when he died. After Connor’s death, the remaining patients at Slade House were banned from taking baths at all, including those who did not have epilepsy. We must not have needlessly restrictive changes that impair inpatients’ quality of life with increased intrusion and reduced liberty; we must have proper training for staff and person-centred care for all. In a unit with only five or ten patients, there can be no excuse not to provide that.

The proceedings of the inquest were live-tweeted by George Julian and compiled and posted on this blog. They are as follows:

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