Connor Sparrowhawk (known as Laughing Boy, or LB) drowned in the bath in an NHS Assessment and Treatment Unit (Slade House) in Oxford on 4.7.13. He was 18 and diagnosed with epilepsy and autism. The specialist learning disability unit, run by the Hampshire based Southern Health NHS Foundation Trust (Sloven), had four members of staff on duty 24 hours a day and 5 patients. It was jointly commissioned by Oxfordshire Clinical Commissioning Group (OCCG) and Oxfordshire County Council (OCC). LB was admitted to the unit after becoming anxious and unpredictable. He died 107days later.
A 15 minute film, to find out more about LB, what happened to him and our subsequent campaign for justice, can be seen here:
The Tale of Laughing Boy from My Life My Choice on Vimeo.
You can read earlier (funny) posts about LB from about here, pressing ‘next’ in the top right hand corner.
Good summary by Simon Hattenstone here (Guardian mag, 2.4.16). My book which tells the story up to the Autumn of 2017 is available here.
Two months after LB’s death, an unannounced Care Quality Commission inspection of Slade House found the unit to be inadequate in all 10 measures of assessment. Enforcement notices were issued and it has since closed. Other learning disability provision run by Sloven in Oxfordshire also received CQC enforcement notices and their Oxfordshire contract won’t be renewed this year. [Andrew Smith, MP, is currently campaigning to stop Sloven selling the Slade House site and keeping the loot. He is joined in this campaign by local self advocacy group, My Life My Choice].
In Feb 14 an independent report by Verita, commissioned by Sloven after a considerable fight by us, found his death was preventable. It was the outcome of a combination of poor leadership and poor care in the unit.
A police investigation continues into LB’s death alongside a Health and Safety Executive investigation. The police investigation was closed in August 2015. Sloven staff have been referred to the General Medical Council and the Nursing Midwifery Council and remain under investigation. The responsible clinician was suspended for 12 months and was then let back to practice in part because ‘‘At the time of these events you were a young consultant in the difficult field of adult learning difficulties”. A full account of the holes in the panel decision can be found here. After giving evidence at the tribunal, I ended up having nearly 6 months off work due to ill health. I captured this experience in Writing Trauma.
A broader review, commissioned by NHS England and the Oxfordshire Adult Safeguarding Board is underway, again conducted by Verita. This review looked at national, regional and local issues around learning disability provision and what happened to LB. It sank without a trace in October after bizarre findings. NHS England have also commissioned Mazars to investigate Sloven responses to all deaths in their learning disability and mental health provision dating back to 2011. [David Nicholson agreed to action this the day he retired after we met him with Jane Cummings]. We requested this review (see the Connor Manifesto) after Sloven labelled LB’s death as natural causes and we were concerned about the non investigation of other deaths in their provision. This review was published on December 17th 2015 after unprecedented challenge by Sloven to stop publication. The report was leaked on December 9th sparking an Urgent Question sessions in the House of Commons. The text of this debate can be read here (from 11.51am)
OCC commissioned an ‘independent review’ into LB’s death without involving us or informing us. They were made to disclose this document to us in Mar 15. It contains numerous inaccuracies and defamatory content and we’re currently seeking legal advice about this.
The inquest After four pre-inquest reviews, LB’s inquest was held in Oxford 5-15th October in front of a jury. The full determination can be read here (neglect and failings) and the Prevention of Future Deaths pointlessness here. It emerged during the inquest that a patient had died in the same bath in 2006. Sloven were aware of this death but failed to disclose it to the police, coroner, HSE or us. The inquest proceedings were live tweeted by George Julian and can be read here.
The criminal prosecution The Trust eventually pleaded guilty to the deaths of Connor and another patient, Teresa Colvin (TJ), and was sentenced in March 2018. The sentencing remarks of the Judge, Mr Justice Stuart-Smith, can be read here. Well worth a read to see what depths NHS Trusts are prepared to sink too, to defend their reputations. The Trust received the biggest fine in the history of the NHS for Connor and TJ’s deaths.
The campaign/social movement #JusticeforLB was created/emerged to draw attention to LB’s preventable death, ensure that people know about him and that change occurs for others. It’s unfunded and draws on the skills, ability, enthusiasm, love and goodwill of many people. George Julian is informal campaign manager, PR person and a lot more.
#107days and the #LBBill
Between Mar 19-Jul 4 2014 #JusticeforLB ran what turned out to be a remarkable crowd sourced and spontaneous campaign to celebrate LB’s life, raise awareness about provision for learning disabled people and fundraise for legal costs at the inquest. (Families have to pay for their own legal representation at inquests despite public bodies being able to draw on the public purse to defend themselves. The costs, an estimated £25,000, have been raised.) A second version of #107days ran this year.
The #LBBill emerged out of the first #107days campaign from an idea Mark Neary had about changing the law so that learning disabled people couldn’t be moved against their wishes. Ideas from the #LBBill fed into the last government’s Green Paper No Voice Unheard, No Right Ignored. The Bill has also fed into the current Law Commission consultation on Mental Capacity and the Deprivation of Liberty. We are hoping the Bill will be adopted as a Private Members Bill in the next Private Members ballot.
This is a skim through what has been and continues to be a tale of atrocity, rage, deceit and bullying, but also extraordinary solidarity, collectivism, joy, celebration, humour and creativity. Over two years on, the dark side of public bodies remain hellbent on crushing us with no whiff of remorse, commitment to change or any demonstrable positive action. This is documented in painful detail on the pages of this blog.
It also turns out, without much digging, that despite much (so much) talk about ‘learning lessons’, members of the Sloven management team, including their award winning CEO, Katrina Percy, have been involved in a previous Verita investigation into poor care at Fordingbridge Hospital (2007/8). A heavily redacted version of this review is available here. [Update: Percy eventually resigned over contract irregularities in October 2016.]
I have followed your blog since last summer, and want to express my heartfelt sorrow to you on LB’s death. His preventable death, which was clearly the case back in July and is evident now from the findings of the independent report.
Although I cannot possibly put myself in your shoes, I, too, have a son with (poorly controlled) epilepsy, autism and learning disabilities. Keeping risks to a minimum is a never-ending battle, and seared in my memory is when he had a tonic-clonic seizure at home in the bath. He’s also had absence seizures and atonic (drop) seizures during swimming lessons, all of which required instant intervention to stop him from drowning.
To think within a “care” setting, that anything less than close supervision of a person with epilepsy at bath time is seen as adequate, beggars belief. Whether at Trust level, down to individuals caring for patients, my view is that there is a criminal case to answer, whether at a corporate level, individually, or both.
If I had shown such an absence of care to my child, by putting him in such obvious danger to life, then I would expect the full force of criminal law on me. Why should a Trust, or individuals responsible for patient care, be any different?
The specific details of LB’s case, and the wider issues of how society (mis)treats people with learning disabilities, needs a broader audience beyond local media. Have any of the Panorama team involved in the Winterbourne View case (Shelley Jofrie?) been contacted?
I also thought that perhaps Alex Thomson, chief correspondent with Channel 4 News, might be interested. He is heading the Epilepsy Action appeal on Radio 4 at 7.55am tomorrow morning, as one of his twin boys has epilepsy.
With my thoughts and best wishes to you.
I tried tweeting @BBCnews 4 days ago to the effect that Winterbourne had nationwide coverage and so should this, asking where their Panorama team were – they didn’t reply.
You are so right about the never ending battle keeping risks to minimum for our youngsters, especially as they get older and you try to give them the independence they need. Also so right about criminal case to answer, we can only hope that the ever increasing social media coverage will eventually result in national coverage and #justiceforLB.
Best wishes, Jenny
Please stay strong and thank god you drew attention to the appalling management! I worked there in the senior leadership team and lasted 6 months, they are not only incompetent but toxic! I resigned!!! They were covering up deaths when I was there
Don’t you think you should have brought this to the attention of the police when you witnessed these unforgiving acts for yourself instead of resigning and moving on. LB may still be alive if the people who worked there, or in your case previously worked there had reported concerns, and had the guts to actually do something about stopping them.
Good summary to share S&G . Hope it goes far and wide. Xx
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Sara and family, I have been following your blog since last year. I am very very sorry about what happened to LB. Sometimes what you go through day to day is just too painful to read so I confess there is some of what you write that I cannot bear to read. If only, even just for a minute, it was possible for you not feel the pain you do.
Our own dude is 14 and we are all to familiar with the need to advocate (read fight) on his behalf over and over.
So what good can we do for LB? (other than make a donation which we will do)
I work in healthcare and my husband works in pupil support in education in central Scotland.
We pledge to do the following : We will live and work by our values. We will not accept poor care from ourselves or others for all dudes. We will listen to dudes and their families. When we make mistakes (which we will) we will apologise and mean it. We will do this promptly and show, as clearly and transparently as we can, what we are doing to fix the causes of those mistakes. We will make the most of every day we have with our son. We will challenge the ingrained horrible attitudes towards people (human beings!!) with autism and/or learning disabilities. If we find ourselves not doing this, we will get out of health and education because we won’t belong there.
Thank you for your bravery and taking Southern Health to task. When you do this, it gives every dude out there a better chance for a better future.
We hope you can find some peace somehow.
I work in education and I pledge to do all that stuff too. As a bereaved parent myself I do feel Sara’s pain
Dear Sara – I have only just come across your blog and the campaign Justice for LB. It has shocked me to the core and got me wondering about the circumstances surrounding the death of my brother who had Aspergers and mental health problems resulting in his admission to a private Assessment unit just over a year ago; he died 5 days after a ‘freak’ accident on 21st Feb this year which was not seen by any staff but which was consequent from delays in repairs to railings/ ramped access to the unit. At the time I had raised my concerns with the social services LD team and requested a vulnerable adults procedure be instigated. It was actioned but was not taken seriously as it did not involve sexual abuse and so was closed after he died – as he was no longer at risk! I had asked for it to be treated as a serious incident and the medical team, who treated my brother until his death, also requested SS to respond due to the severity and nature of the injury he sustained. As a Social Worker of 25 years experience who had fought ‘tooth and nail’ to ensure that others that I cared for under my caseload, I allowed myself to be persuaded that all that could have been done by the unit and Social Services had been carried out. Since his death though, I and other family have had niggling doubts about the detail of the circumstances leading up to the incident as told by the manager. An inquest is to be held in September but I have no idea now as to whether I should be considering legal representation for the same or not. I would welcome any advice you might give as to where I could go for more information/ support over the same.
Stephanie, only just seen this – can you share with us whether you managed to access some support and what happened at your brother’s inquest? I hope you got answers that you feel confident were truthful and fair.
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just found this after seeing Connor’s Mum on breakfast tv. If she needs crowdfunding to continue to fight this injustice, how do I contribute? A family member has severe epilepsy, I know the dangers of drowning in the bath, and Im a lay person. How can a health provider not realise its a risk factor? I work as part of a team of service users and carers in a Uni setting, bringing lived experience of a range of health and care issues into the classroom. From student recruitment and selection, through to monitoring courses and research. I’m a (former) social work practitioner and practice teacher. I’m also doing support for a lot of students with disabilities including Autistic spectrum. Im just gobsmacked a health setting can be so dangerous for vulnerable people and yet nothing gets done promptly in response to prevent it happening again
Dear Sara, I have just discovered your blog. My sister Lulu had special needs, brain damage, autistic traits. I have a blog at dontbringlulu.co.uk and I co-wrote a book with my parents Ron and Doris Onions called ‘Don’t Bring Lulu, Her Family’s Tale of Trial and Triumph’. My sister died in 2009 – she choked on some food in the care home in Telling, E. Sussex. Please let me know if you need any help with the class action. I also work as a journalist for Radio Jackie ( my father was a journalist too.) Also, is it OK to use the pix of Connor on my blog?
Good luck in your campaign. Sarah Onions.
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My sister and friend informed me of your loss following an incident that occurred where my son of 24 years of age was admitted to hospital following an injury to his penis. On arrival to the hospital the medical staff raised a case of “Safeguarding” as whilst in residential care he suffered 3 cuts to his penis with no explanations.
I am so sorry for your loss and I would like to further my case of abuse to highlight the need to be heard and actions to be addressed by governing bodies such as quality Care Commissioner (CQC) to take better actions to elevate care homes who claim to support vulnerable people, but really their only interest is making money.
I was very sorry to hear about your son’s death and I can’t imagine the pain you and your family are feeling. Perhaps I have a little understanding because my middle daughter Rosie was diagnosed with an acute form of leukemia which she was 13 and very sadly some of her teenage friends from the cancer ward didn’t make it. I also have a older daughter called jade who at 14 was admitted to an inpatient psychiatric ward after a suicide attempt. My daughter celebrated her 26 birthday in September and is still sectioned. During this time she has been diagnosed with PTS , borderline personality disorder, autism and treatment resistant psychosis. She had been moved from Birmingham to Northampton, Bath, Cambridge, Cardiff and now Nottingham. Clearly the system has not worked and yet all they can offer is to move her on to another placement. We desparetely want her to come home because we feel that with a wrap around care package she will have a better chance of recovery. However the hospital will not communicate with us and despite a previous tribunal recommending that Birmingham social services commission a feasibility study regarding jade coming home nothing had been done. Do you or any parents/ carer’s that you know have any suggestions regarding how we go forward? The tribunal route doesn’t seem to work because they just continue the section and I am not denying that my daughter is poorly I just want to challenge the fact that inpatient care has failed her. Anyway Sara if you read this I am sending all my good wishes to yourself and your family and once again I am sorry about your loss of a beloved son.
With warmest regards
Ms Linda Hutchings
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I am a mental health nursing student writing an essay about importance of leadership and its importance to patient safety. I was researching the Mazars report (2015) as part of this essay and came across where this investigation began. I want to express my sincere condolences to you and your family for the loss of your son. I really cant imagine the turmoil and heartbreak you must have felt and still feel to this day.
After listening to your radio interview it really struck a nerve and emotion in me. This story is something I will carry with me throughout my practice when caring for my patients. I just wanted to write to you to let you know that he will never be forgotten and that future nurses like me are still reading this report. Hopefully we can all learn and improve patient care from this awful event, especially for those with a learning disability who are so vulnerable.
Sending blessings and strength to you and your family!!
Thank you Mairead, this is such a delight to read. I wish you all the best in your studies and working life.
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