Review

Oxford academic who lost her 18-year-old son while he was under NHS care shares tragic fight for justice

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She was represented at son’s inquest by legal dream team she met on Twitter

Baroness Helena Kennedy, a silk at Doughty Street Chambers, is not someone I’ve ever claimed to have anything in common with. But now, having read in her foreword to Justice for Laughing Boy that she “wept when [she] read this powerful book”, I can say that I do.

The story of a young man, Connor Sparrowhawk, found dead while under the care of an NHS trust, this 2018 title is beyond your typical read-by-the-beach weepy. For starters, it’s true. And, particularly poignantly, it’s written by Sparrowhawk’s mother, Sara Ryan, who is an academic at the University of Oxford.

Justice for Laughing Boy is many things. Particularly in the first half of the book, much reads like an extended eulogy to Sparrowhawk — “a strong defender of human rights” whose passion for buses, N-Dubz, The Inbetweeners and mermaids demonstrates his quirky loveableness.

But, sadly, Justice for Laughing Boy is also a public record of Ryan’s herculean battle against the authorities following her son’s autism diagnosis.

Banned from a local primary school and faced with paediatricians’ “relentless focus on deficit”, as Sparrowhawk approached adulthood he became “uncharacteristically unhappy and anxious”, even turning violent on occasion.

Ryan tried desperately to seek effective support for her son, but grew increasingly frustrated at learning-disabled persons’ place “very much near the bottom of, or at the bottom of, the support pile”. She was faced, recurrently, with “mother-blame” as a response to her concerns; calls to crisis lines, GPs and more saw Ryan “almost gnawing on the phone in despair”. She began documenting her struggles on her blog, My Daft Life, where she was met with similar stories from the parents of other learning-disabled children.

In spring 2013, Sparrowhawk was moved to a short-term assessment and treatment unit run by Southern Health NHS Foundation Trust, where he would be observed and assessed over a few weeks “to work out why he was so distressed and unpredictable”. While there, Sparrowhawk lunged at a support worker, was pinned face down to the floor by four staff, and sectioned under the Mental Health Act. More than 100 days later, in July 2013, Sparrowhawk suffered an epileptic seizure while taking a bath. He had been born in a bath and had died, aged 18, in a bath, too.

Ryan was staggered by the level of negligence demonstrated by the trust, not least because her son, a diagnosed epileptic, was left unsupervised and locked in a room while bathing. It even came to the fore that a 57-year-old man had previously died in the same bath as Sparrowhawk and in the presence of some of the same staff members — and that a nurse on shift while Sparrowhawk was in the bath had being doing an online shop. “A death by indifference,” Ryan says.

A photo of Helena Kennedy, Sara Ryan, Deborah Coles (INQUEST) and Caoilfhionn Gallagher at the Justice for Laughing Boy book launch, hosted by Doughty Street Chambers. Image credit: Twitter Angela__Patrick

Since Sparrowhawk’s death, Ryan, her family and supporters have spent years fighting their #JusticeForLB campaign, which has won Liberty’s ‘Close to Home’ award. Utilising the law effectively is perhaps one of the most vital components to Ryan and co’s mission. Yet, as Kennedy says in her foreword, Justice for Laughing Boy is a story that “lays bare the deep inequities within our legal system”.

This is perhaps most striking at the inquest into Sparrowhawk’s death. Facing seven separate legal teams on the other side, Ryan rubbishes the then Minister for Justice and Civil Liberties’ claim that inquests “are specifically designed so people without legal knowledge can easily participate” as “utter bollocks”. She continues:

“There were no wigs and gowns… but the context, the setting, the process and the enormity of the whole thing was overwhelming.”

Fortunately, and vitally, Sparrowhawk “had the very best fighting in his corner”, in the form of: Bindmans’ Charlotte Haworth Hird, Brick Court Chambers‘ Paul Bowen QC, Doughty Street’s Caoilfhionn Gallagher (now QC) and her new pupil, Keina Yoshida. (The Sparrowhawk inquest took part in the first two weeks of Yoshida’s pupillage, what an interesting case to start off with.)

Speaking to Legal Cheek, Bowen explains how this legal dream team was assembled:

“I’ve done a number of high-profile cases involving the rights of disabled people and I’d been following Sara’s blog and also on Twitter; it was through Twitter I found out Connor had died.”

Bowen, who has acted for right-to-die campaigners Debbie Purdy and Tony Nicklinson, continues:

“Given my legal background, I felt I’d be able to help so I reached out to Sara on Twitter, and Caoilfhionn did the same. It was Caoilfhionn who put the family onto INQUEST [a charity providing advice on state-related deaths], who then put them onto Bindmans. It wouldn’t have happened without Twitter.”

Ryan couldn’t speak more highly of her legal team, who “led the proceedings from start to finish with expertise and an apparently instinctive grasp of what battles were important to fight and what to leave”. Gallagher and Haworth Hird “demonstrated speed, skill and expertise in digging through tomes of case law to provide additional evidence”, while Ryan commends Bowen’s “polite, missile-like points”.

But, even with a stellar legal team, navigating the two-week jury inquest was far from easy. “From the moment Connor died, it felt like a well-oiled machine, involving the Southern Health in-house and external legal representatives, was cementing a wall of denials,” Ryan reflects. “In our two years of interactions with our legal team… they had always been brutally open about what a mountain climb we were facing in this process.”

Ryan continues to climb that mountain. Justice for Laughing Boy, which is soon to be made into a film, ends:

“I hope this much-needed conversation has started. We all have a responsibility to drag the UK out of a learning disability ‘care’ space that seems to remain aligned closer to the eugenic practices of the last century than a so-called advanced, civilised society.”

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13 Comments

Anonymous

Great article. More like these LC!

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Anonymous

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Ella

This case raises a lot of gritty legal issues about medical negligence-style cases and how the courts shiuld treat them. Lawyers who sue the NHS are branded ambulance chasers yet claimants who hold the government to account through judicial review proceedings are branded as heros. Read Justice 4 LB and you’ll see the divide is not that simple.

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Anonymous

This is a sad and troubling story that, sadly I suspect, happens more than we’d care to think.

But I don’t really understand what the article is saying about frustration at the conduct of the inquest. What was Ms Ryan seeking? Was there some issue like contested Article 2 consideration, expanded inquiry, request for adjournment for police investigation, or similar? The gist of the problem seems to have been left out.

Anyway, good luck to Ms Ryan.

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Sara

Hi, in answer to your question, the Trust argued against an Article 2 inquest and jury in the first couple of PIRs. Their barrister argued that the various investigations (police, CQC etc) meant that an Article 2 inquest wasn’t necessary and as the cause of death wasn’t unnatural there was no need for a jury. There were layers of awfulness to the inquest. I recommend you read the book to get the full story 😉

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Anonymous

Thank you. That’s very good of you to take the time to answer the question.

I will buy your book.

Regards.

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Bless this Enterprise, New World Order

We cannot admit that state schools are similar to old style army fatigue exercises.

If we taught LD children the Alexander Technique, or we briefed them on things verbally, as happens in a civil service hierarchy, they would soon become brighter, more advanced human beings than those confined by the written curriculum. This would suit their disposition.

We cannot admit that hospital rank and file staff, and officer staff such as psychiatrists, are incapable of curing people and are just feeding pension funds and private equity by dispensing meds most of the time.

We cannot admit it because we would be admitting that we have become an inhumane world order, like that described by ethical former Etonians, Aldous Huxley and George Orwell.

So instead of recruiting people who might have a flair for healing, like Mattias Alexander, we have to recruit people who will say ” you must be a bad mother” or ” here is a bottle of citralapram or lithium” in certain circumstances.

There’s a slight middle class thermal on the back of this tragedy at some barristers chambers. Well done to them. They can rake it in.

Alas no comprehensive, day school, boarding school or university is going to alter the supply line and supply humans to the system with the skill and confidence to change it.

Unless we start to embrace the New World Order.

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Anonymous

This post has been removed because it breached Legal Cheek’s comments policy.

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Cynical Cynthia

Why is the fact that the mother is an Oxford academic even remotely relevant? Typical Legal Cheek, cynically trying to get views from prestige whores at the expense of an otherwise nice story.

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Sara

I dunno Cynthia. Including occupation is fairly common in book reviews. If you’re not an established author people are interested in what you do for your day job. Whatever the job.

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Rose Thorn

as an LD parent myself (who studied a bit of law because, well, we LD parents need to tbh) I feel the prestige of having someone like Sara fighting our corner is not only wonderful but absolutely essential. ‘prestige whores’ Sara and her team most defintely are not. your cynicism speaks volumes Cynthia though I would never hook it up with harlotry.

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A sparrowhawk for a priest

I think a narrative of inquiry was missed by the coroner and the lawyers here.

The trust got £3500 per day for Connor. He had been referred for care to them because in the previous few months his disillusionment with the ” bollocks” of life had morphed from the wry comment stage to violence at school.

His mum had a sense of foreboding when she handed him over to the relevant doctor, hoping for respite and a cure.

The trust prolonged his stay by a combination of poor treatment, poor care plans and what seemed to be a devious ploy not to explain to him or any of his visiting family members that he was not, in fact, legally detained after a certain point. They raked it in accordingly.

Right at the end of his 107 days , at page 241 242, it is clear that he has befriended the other patients or detainees and he films himself giving the trust unit the middle finger.

I guess from his point of view he thought he was going to leave the unit for good. He had probably worked out that he was not legally detained, or his new friends had worked it out for him. His mum was due to pick him up for a visit to a bus depot, which was his favourite pleasure. That would be the end. He could tell her he was free to go home with her after looking at the buses. She would rescue him from carers that he probably regarded as pill dispensing automatons. He always believed she would bring him home. 242

The problem was that his mum was a cynical blogger about the treatment of autism and about the so called care in Oxford in particular.

If Connor did leave the unit that day, with his middle finger sentiment, it would likely be only be a matter of time before the blog – which was gaining traction – became worse.

There had been literally hundreds of uninvestigated premature deaths of autistic or learning difficulty people at the trust and its predecessor. It is likely, I suggest, that Connor’s new friends knew people who had died and had told him about them and about how no one cared.

He was bound to tell his mum. She was bound to blog it, upon finding it to be true. She was also an academic specialising in autism at Oxford university. There would be no stopping her.

Likely, if one could engineer some violence from Connor, one could trigger a mental health law , or some persuasive narrative at least , to stop him leaving the unit.

His key nurse invited him to have a wash before he met his mum to go to the bus depot. It is possible she saw Connor film himself giving the unit the finger, because her invitation for the wash is caught on his video tape. 241

Connor ended up in the bathroom moments later naked. We never find out who locked the door to it. There is a chance it may have been Connor, we have to record that (because no one was clever enough to eliminate the possibility) , but it seems to have been taken as read that it was locked from the outside.

Was the idea of locking it from the outside to make him fret that he would miss his mum calling with the message being passed that he was not ready ? Was it to turn his middle finger sentiment into violence upon unlocking it once he was angry enough to strike someone ? Well it is certainly tempting to say there was no good reason for locking it because he had a history of seizures and epilepsy and to lock it and leave him on a “watch every 15 minutes ” Rota was negligent practice for such a profile.

Negligent practice, with so many staff on that day would, but for the threat of the enhanced blog, I suggest, be totally unexpected.

A reason was offered at the inquest. It amounted to – so he could masturbate. This could have been obliterated – it wasn’t – but the jury reached the most condemning version of the trust ‘s conduct that they could, anyway.

The chill here is not that lame justification, it is those deaths in the low hundreds. Victims like Harold Shipman’s elderly and Fred West’s – in social care – types who are not usually missed or properly investigated.

Two members of Connor’s staff were on shift as Connor bathed when the unknown Clive Grainger, 57, had died an unexpected death in the same bath in 2006.

Was there a temptation by those well versed in the system to keep Connor in the bath till he died of a seizure panicking that he was locked in there and knowing that a death by natural causes narrative could be quickly circulated to the local police, regulators and lawyers ? 221 bottom.

It is a runner that that is what happened because although Connor was taken to the hospital, he never made it out of that bathroom alive.

The trust’s lawyers frustrated the coroner’s inquest with various chess moves but Doughty Street and Brick Court’s finest held them in check until a stroke of evil genius on disclosure at the last minute.

Yes, the revelation about Clive Grainger and two members of Connors staff being present at his death was withheld till the last minute. I am guessing a good two years into the litigation process (189) , at the inquest door.

What was the coroner to do…ask how many of Connors shift were present on the many other deaths there had been and have them disclosed to this Oxford university autism expert and connor’s widely blogged inquest so patterns could be scrutinised ?

Or declare that the details of Clive Grainger’s death did not warrant public scrutiny, in his opinion, he was happy that it was a coincidence ?

He chose the latter. Connors mum exclaimed by email that he could not be serious about leaving Clive Grainger on a dusty shelf (my words), but he was absolutely serious. Leave it Mrs.

How many others who died would have been legally free to leave and turn off the cash tap anytime? We don’t know.

The book has the subtitle – a death by indifference – but that is a big let off in my opinion.

I was moved to look up the poem from 1486A.D at the start of Kes by Barry Hines which has the line Hines took – ” a kestrel for a knave.”

It is preceded by “A sparrowhawk for a priest” and I had a feeling that a sparrowhawk was one of the birds in it all these years after reading it.

His family were wondering what connor was going to do for a job now he had turned 18. He would have made a good priest with a mum like his.

I say that those ruthless medics deprived us of a turbulent priest, and they got away with it !

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Jenny

What is really really sad is that walls are built and the NHS and Councils close ranks and they have money for the best legal teams. A litigant in person stands no chance against a massive insurance company and as i have just found out myself the cost shifting thing is a massive injustice for the family of a deceased person or an injured person trying to claim compensation that is rightly theirs. Its about profit for them but to some its about surviving and no court should say a claim is modest may be to them but to some its everything. Time to back the victim not make the rich richer. X

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