‘What has Steve Wright got, Mum?’ he asked. ‘DJitis,’ I said. Sara Ryan (Rich Huggins)

Justice for Laughing Boy: Connor Sparrowhawk –            A Death by Indifference, by Sara Ryan

Review by Clare Sambrook

Sara Ryan began a blog six years ago, “mostly to document the funny stories that happened in our everyday lives.” Called mydaftlife, it’s a warm and funny read. Ryan has an ear for dialogue, a photographer’s eye — and she’s a nifty swearer. Star of the show is her son Connor, his quirky take on life. One of five children, they call him Laughing Boy, LB for short. He loves lorries, buses, coaches, London, Eddie Stobart, and the family’s Jack Russell, Chunky Stan.

Connor is 15 when the blog starts. Here’s a conversation:

• ‘Hey LB! How did meal prep go today?’
• ‘Not good, Mum.’
• ‘Oh. Why not?’
• ‘I failed, Mum.’
• ‘Whaddayamean, you failed?’
• ‘I failed, Mum.’
• ‘Why? What did you cook?’
• ‘Kebabs, Mum.’
• ‘Oh. I don’t get it. What went wrong?’
• ‘I didn’t have a skewer, Mum.’
• ‘Oh. Why not?’
• ‘Dunno, Mum.’
• ‘So what did you eat for lunch?’
• ‘Bits, Mum.’

Connor has autism, learning difficulties, epilepsy. He’s nearing 18 and the prospect of leaving school, the people he knows and likes, when the story darkens. An early encounter with adult social care comes with a manager’s humourless remark: “I am his future.”

At home and at school Connor becomes anxious, unhappy, unpredictable, unlike himself. Things come to a head when he punches Big Sue, his beloved support teacher. The family, at their wit’s end, learn that there’s an NHS unit close by that can help. It’s a Short Term Assessment and Treatment Unit (STATT, for short), a mile or two from their Oxford home. It’s called Slade House and run by Southern Health NHS Foundation Trust. There a team of learning disability specialists — psychiatrists, psychologists, occupational therapists, nurses — will keep Connor safe, take a few weeks to assess him, work out the cause of his distress.

Connor is admitted one night in March 2013. The next morning, in the early hours, he is forcibly restrained by four staff, pinned face-down. Says Ryan: “That was the day he stopped being a sixth former.”

Weeks pass. Connor loses weight. One morning, fifteen weeks and two days after his admission, Connor (he has epilepsy, remember) is left alone, behind a locked door, out of earshot, in a steep-sided bath. He has a seizure. And he drowns.

His mother’s blog, and now her book, tells this story and its brutal aftermath, as Connor’s family tries to find out what exactly happened to him, how on earth it can have happened at all.

Other families bereaved by state neglect and wrongdoing might find their own experience reflected here: the “indescribable terror”, the pain and struggle, being blocked and bewildered by official lying and contempt. The bullying and the bruising, the character attack, the surveillance, the accusation that you are the problem.

The waiting.

And the inequality of arms. About the early days, Ryan writes: “We had no idea how uneven the ‘playing field’ was in a game we didn’t yet understand we were playing.”

Ryan’s craft — she is a Senior Research Lead at Oxford University — serves the fight. Her partner Richard Huggins is an academic too. Their #JusticeforLB campaign, supported by family, friends, and the charity INQUEST, forces the exposure of negligence and incompetence on a scale that is hard to comprehend.

It turns out that seven years before Connor died, another patient drowned in the same NHS unit. In the same bath. A fact that Southern Health concealed for more than two years after Connor’s death.

It turns out that Southern Health has failed properly to investigate more than 1,000 unexpected deaths — in only four years — and that the deaths of people with learning disabilities are least likely to be investigated. Fewer than 1% of their unexpected deaths have been looked into. One per cent. As if their lives and deaths don’t matter.

Without #JusticeforLB these things and more would likely have stayed hidden.

Ryan points to the premature mortality rates of people with learning disabilities in the UK, the hate crime, the “lukewarm outrage” to documented experiences of abuse, the lethal undertow of eugenics.

Connor’s life, a happy life, well-lived, shared, recorded, celebrated, proves the wrong and falsity in all of that.

Ryan’s book speaks of a family’s dreadful loss, charts a creative, comradely and joyous campaign for truth, for justice and accountability, strikes a blow for human rights. And brings to life her funny, kind and much-loved son.

Connor at his school prom (#JusticeforLB)

Justice for Laughing Boy: Connor Sparrowhawk –            A Death by Indifference

Extract by Sara Ryan

One thing that was never pinned down during the inquest was what actually happened on the morning Connor died. We found out from the documentation and witness statements that Connor woke up and was going to have a bath before going to visit the Oxford Bus Company. According to the documentation his support worker and key nurse checked on him every 15 minutes until 9.15am when he was found unconscious. Where the decision for 15-minute observations came from was never uncovered, as witness after witness was asked and said they didn’t know.

They were both in the nurses’ office which was across the corridor from the bathroom, a short distance away. The support worker was doing an online Tesco order in between checking on Connor. The mundaneness of this detail fills me with queasiness. Still. Ticking the ‘3 for 2’ box while Connor drowned feet away. Their statements and witness testimony provided contradictory evidence about who did what and when. The support worker’s evidence revealed that the bathroom door was locked. She used a key to open it before she found him. Until then, we hadn’t been told that the bathroom door had been locked.

‘Bus’ by Connor Sparrowhawk

So, not only was Connor not supervised in the bath, but he was locked in the room. This was presented as allowing Connor the privacy to do ‘what boys do in the bathroom’. It was never made clear who locked the door. When it was raised a second time, one or two barristers leapt up to say that we did not know if the door was ‘locked’ – this in spite of the evidence given by the support worker that she had ‘used a key to open it’.

Thinking back to Connor bathing at home in the downstairs bathroom with no door, and a constant in‑and‑out of talking to him, reminding him to wash his hair, chatting to him and answering his endless questions, I felt physically sick. In 18 years, we had never left him in the bath with the door shut, let alone locked. Big Sue and Tina said that, on residential school trips, they would always stand by the door of the shower and talk to the kids, even those without epilepsy.

Sitting there in full view of the jury and listening to the evidence – ‘I checked…oh no, he checked’ sort of stuff – my brain was screaming: ‘What the actual fuck were you doing? Who checked? When? Did you ever fucking “check”? Or did you suddenly wonder where he was?’ The contradictory evidence over who checked and when was never fully addressed during the inquest.

Staff evidence exhibited a mix of remorsefulness, defensiveness, reflectiveness and the downright offensive. The hardest to sit through was [consultant psychiatrist] Dr Murphy, which spread from the Friday afternoon in person to the following Monday by video link from Ireland.

Step-dad, Rich, brothers Owen & Tom, Connor (far right) two weeks before he died (Ryan)

We knew from the Verita review [February 2014, PDF here] that Dr Murphy had assessed that Connor had not had a seizure on 20 May. She took his subsequent statement that he remembered biting his tongue when angry as the accepted version of what happened without discussion with us. The fact that she interacted with Connor a handful of times across the 107 days was irrelevant.

When asked about if Connor had had a seizure, would it be appropriate to leave him in the bath, she replied, ‘If it was a proven seizure, it wouldn’t have been appropriate.’ She went on to say, ‘My understanding is Connor didn’t have a seizure while he was on the ward’ – a point the Coroner dismissed, gently reminding her Connor had a seizure on the day he died.

When questioned about the bleedingly obvious point that you don’t rule seizure activity out in a patient with epilepsy, she replied, ‘I made a judgement call on that day, with all the information I had and I’m always thinking bigger picture and I think that’s normal.’

Paul Bowen QC, [the family’s barrister] making his polite, missile-like points, continued his questioning, drawing on the testimony of expert witness Professor Crawford, a consultant neurologist and Director of the Special Centre for Epilepsy, York.

‘Dr Ryan had seen her son have seizures in the past.’

‘Yes.’

‘And she had seen how he presented after a seizure. And she was the best person to know, having seen him that day whether it was likely or not that he had had a seizure, wasn’t she?’

‘I suppose so.’

‘And indeed, I could put it to you that Professor Crawford draws the conclusion that it probably was as a result of an unobserved seizure that he bit his tongue.’

‘Well, with all due respect, Professor Crawford wasn’t there.’

‘I could say the same, you weren’t actually there when he was supposed to have had the seizure.’

No.

The inquest was obviously a difficult process, and compounded by what seemed to be a continuing tendency to mother‑blame. The staff witness statements produced for Connor’s inquest offered further examples of this. This set of statements typically included a section headed ‘My Relationship with Dr Ryan’ or just ‘Dr Ryan’. Such a heading was unnecessary for many reasons, not least that Connor clearly had a large family who (apart from Tom, who at 13 years old was not allowed on the ward) visited him in the Unit and interacted with staff. It was also odd given I was called Sara in the Unit – there was no ‘Dr’ stuff in those days.

At Marble Arch, waiting for the bus home after birthday day out, Connor & Tom (Sara Ryan)

Charlotte [Haworth Hird, a leading human rights solicitor] sent us these witness statements in September 2015 with an email warning us of the content. It’s odd really, contrasting the actions that help or ease, with those that make a devastating situation worse. Reading the evidence in advance of Connor’s inquest was devastating. For example, a student nurse who until that point I thought I had got on well with stated:

‘I had seen Dr Ryan shouting at a consultant and I did not want to experience that. I was scared of her; she was a bit different.’

When something goes catastrophically wrong, pinning the blame on ‘Mum’ or the family rather than trying to establish openly and transparently what went wrong is one of those aspects of public sector provision that has consistently floored us over the past few years. Of course, mother-blame does, in effect, help to relieve a Trust or County Council from having to think about the pain and grief bereaved families experience.

Craftivisim by George Julian #JusticeforLBIt is also indicative of a wider shortcoming in many health and social care services – of failing to want to understand the experiences and views of families, and failing to factor this in when making decisions or statements.

The County Council was also firing nuclear-type missiles our way. We received an independent report commissioned by the Director of Adult Social Care one morning, out of the blue. The report arrived in my inbox two weeks after it had been circulated to everyone and their dog. It was almost farcical, as so much of it was inaccurate. It was also deeply biased, slipping into a review about me and my actions rather than what happened and why.

Days before Connor’s inquest began, Alicia Wood, then CEO of the Housing and Support Alliance (now known as Learning Disability England), had forwarded a copy of a letter to Caoilfhionn Gallagher, the human rights barrister who had earlier offered us pro bono support. The letter was from a less reflective Oxford County Council commissioner who had written to two disability activists excusing the Council’s role in commissioning such crap services. As I read it, I could see again subtexts of mother-blame.

She described feeling ‘immense sympathy’ for me while stating, in the same sentence, that she believed my campaigning had done a lot of damage. ‘In hindsight’ featured, as it does so commonly when something goes catastrophically wrong. We-could-possibly-have-done-more-but-we-were-so-stretched-type bollocks. The letter ends with a toe-curling paragraph which combines ‘immensely sorry’ with the comment that bloggers have ‘a duty to be honest and accurate’:

‘My hope is that she can find some kind of peace with this, and that one day, she might be able to move on.’

Weary Mother, a regular contributor to my blog, captured what the experience is like for many mothers in the following comment on mydaftlife:

So many of us have fought so bloody hard for justice for our sons and daughters and have all been treated as brutally as Sara and her family has…just for seeking justice. Many of us battle on, like Sara, now.

My son is an actor with a group composed of people with learning disabilities. With tears running down my face I watched him when they performed a play about the First World War. My son was the only soldier from that village to come home. In his tattered uniform he came slowly down the aisle in church, Last Post playing quietly. He leaned heavily on stick (as he now does from damage done to him in real life), his head bandaged and bloody. At front the widows wait with his wife, who moves towards him in beautiful and moving joy.

In the background, slowly and in time to the gently played Last Post, a row of our dead boys walk in line, eyes bandaged and unseeing, comrades all. Arm stretched out, hand on comrade’s shoulder.

I wept. So many, so many…so bloody many. Harm is done to our boys and our girls and like those widows, we are grateful if they just come home.

When cross-questioned at Connor’s inquest, the student nurse changed her position and said she was not scared of me. She said I was a mother trying to do her best for her son.

Justice for Laughing Boy: Connor Sparrowhawk – A Death by Indifference, by Sara Ryan with a foreword by Baroness Helena Kennedy QC.
To order a copy for £12.99 go to Jessica Kingsley Publishers.

#JusticeforLB: Notes by Clare Sambrook

• Sara Ryan continues to blog at mydaftlife.

• Connor’s family is supported by the charity INQUEST, and represented by INQUEST Lawyers Group member Charlotte Hird Haworth of Bindmans solicitors.

• Six weeks after Connor died, an unannounced inspection of Slade House by the Care Quality Commission found it to be inadequate in all 10 measures of assessment. That CQC report, published in November 2013, can be found in PDF here. Sara Ryan notes: “The report reads like an inspection of a Victorian asylum.”

• In February 2014 the Verita report, commissioned by Southern Health, confirmed that Connor’s death was preventable. PDF here. 

• A police investigation into Connor’s death was closed in August 2014.

• An inquest jury determined in October 2015 that Connor’s death was contributed to by neglect and very serious failings — failings in the assessment, care and risk management of epilepsy in patients with learning disability, errors and omission in Connor’s care at the unit, Southern Health NHS Foundation Trust Short Term Assessment and Treatment Unit (STATT), Slade House. The full jury findings are here.

Sara Ryan at the launch of her book, Doughty Street Chambers, London, November 2017

• Under pressure from the #JusticeforLB campaign, NHS England commissioned an independent review of deaths of people with a learning disability or mental health problem in contact with Southern Health (from April 2011 to March 2015), known as the Mazars review. Despite Southern Health’s attempts to stop it, the report was published in December 2015. Mazars identified multiple failures of leadership and governance, and revealed that Southern Health had failed properly to investigate more than a thousand unexpected deaths, and that fewer than 1% of the unexpected deaths of people with learning disabilities were looked into. PDF here. The matter was debated in the House of Lords on 10 December 2015. Text here.

• The Mazars findings prompted the Secretary of State for Health to ask the Care Quality Commission to examine how acute, community and mental health NHS trusts across England investigate and learn from deaths and identify necessary improvements. That review, published in December 2016 (PDF here), reported that “families often have a poor experience of investigations and are not always treated with kindness, respect and honesty.” And: “This was particularly the case for families and carers of people with a mental health problem or learning disability.”

• On 9 June 2016, Southern Health accepted full responsibility for Connor’s death, admitted negligence, admitted that it had violated both Connor’s and his family’s human rights. Statement here and below.

Ex-chief executive Katrina Percy• In July 2016 the BBC revealed that Southern Health had handed contracts worth millions of pounds to past associates of chief executive Katrina Percy.

• In August 2016, under pressure from the public, patients and families bereaved by the Trust’s neglect, the Southern Health NHS Trust Board invited chief executive Katrina Percy to step sideways into a £240,000-a-year job created especially for her.

• In October 2016, under continued pressure, Percy stepped down from that role with a £190,000 payoff. At the time of writing (November 2017) Percy is advertising her “strategic consultancy” services on Linkedin. She cites her “inspirational and visionary leadership”, her reputation for “creating a culture which is open, accessible and energised”, and for “delivering ambitious service transformation, financial, quality and operational performance.”

• In August 2017 a medical tribunal found multiple failings by Dr Valerie Murphy, the lead clinician responsible for treating Connor. During the tribunal Sara Ryan was grilled for two hours by Dr Murphy’s barrister which she described as a “barbaric experience”. Ryan told the Oxford Mail: “It was truly traumatising. It was a complete shock.” In November 2017 the tribunal found Murphy guilty of misconduct and said she had failed in ways that “fellow professionals would regard to be deplorable.” The Tribunal is due to meet in February 2018 to consider a sanction for Dr Murphy.

• On 18 September 2017, Southern Health pleaded guilty to breaching health and safety laws in relation to Connor’s death. Two months later Southern Health admitted guilt in relation to the death in April 2012 of 45 year old Teresa Colvin. The Trust’s new chief executive Dr Nick Broughton said: “The prosecutions against the trust are extremely serious and have contributed to a wholesale programme of change.”

We can't stop thinking about this dream of @sarasiobhan 's. Wouldn't it just be incredible? https://t.co/g4ugkT9Zl5 pic.twitter.com/WexHTdOa6W

Trust statement regarding Connor Sparrowhawk’s death

Southern Health NHS Trust Statement, June 2016

Almost three years ago Connor Sparrowhawk died while in our care, for which we are deeply sorry, and we would like to take this opportunity to again offer our unreserved apologies to his family for his preventable death.

We have now been able to come to a successfully mediated settlement with Connor’s family, as detailed in the statement below. The statement and an easy version of the statement are also attached on the right hand side of this page as pdf documents.

PUBLIC STATEMENT BY THE TRUST

1. Southern Health NHS Foundation Trust (“the Trust”) accepts that it was responsible for the death of Connor Sparrowhawk, an 18-year-old boy who was a much loved son, brother and friend. He died on 4th July 2013 whilst in the care and custody of the Short Term Assessment and Treatment (“STATT”) Unit, Slade House, for which the Trust was responsible. Connor’s preventable death was the result of multiple systemic and individual failures by the Trust in the care provided to Connor on the STATT Unit.

2. The Trust accepts:

(i) The findings of the independent investigation into the death of Connor Sparrowhawk by Verita, dated February 2014, which concluded that his death was preventable and found significant failings in the care provided to Connor in particular concerning the management of his epilepsy;

(ii) The findings of the inquest jury on 16th October 2015, which determined that Connor died by drowning following an epileptic seizure while in the bath, contributed to by neglect* due to a number of very serious failings. These failings included both failures in the systems and processes in place to ensure adequate assessment, care and risk management of epilepsy in patients with learning disability at the STATT Unit, and in terms of errors and omissions in relation to Connor’s care whilst on the Unit. The Trust accepts that contributory factors included:

• (a) A lack of clinical leadership on the STATT Unit;
• (b) A lack of adequate training and the provision of guidance for nursing staff in the assessment, care and risk management of epilepsy;
• (c) Very serious failings in relation to Connor’s bathing arrangements; 
• (d) Failure to complete an adequate history of Connor’s epilepsy; 
• (e) Failure to complete an epilepsy risk assessment soon after admission;
• (f) Failure to complete an epilepsy risk assessment thereafter; 
• (g) Inadequate communication by staff with Connor’s family regarding his epilepsy care, needs and risks.

3. Southern Health NHS Foundation Trust acknowledges and accepts that:

(i) The failings identified by Verita and by the inquest jury:

• (a) Caused Connor’s death.
• (b) Were negligent breaches of the duty of care the Trust owed to Connor.
• (c) Violated Connor’s right to life protected by Article 2 of the European Convention on Human Rights.
• (d) Violated the Article 2 rights of Connor’s family.

(ii) The Trust failed to take all reasonable steps to locate all relevant evidence and to disclose this to the Coroner and Connor’s family.

4. The Trust will pay Connor’s family the sum of £80,000 by way of compensation for its unlawful acts and omissions.

5. The Trust fully acknowledges that Dr. Sara Ryan has conducted herself and the Justice for LB campaign in a dignified, fair and reasonable way. To the extent that there have been comments to the contrary by Trust staff and family members of staff, these do not represent the view of the Trust and are expressly disavowed.

*As that word is understood in coronial law.

Justice for Laughing Boy: Connor Sparrowhawk –            A Death by Indifference, by Sara Ryan with a foreword by Baroness Helena Kennedy QC. 

To order a copy for £12.99 go to Jessica Kingsley Publishers.

---

Produced by Clare Sambrook for Shine A Light.