A story of love, loss and human rights
If you read any book this year let it be this one. I read it in one sitting, laughing in places crying in more. It tells the story of Connor, affectionately known as Laughing Boy, by his mum Sara Ryan. Connor who loved his family, Chunky Stan [the family dog], sitting in the sunshine, reading Horrible Histories, Eddie Stobart lorries and London Buses. Connor, who also had autism and epilepsy was found dead in a specialist NHS unit on 4 July 2013. He was 18. He had a seizure in the bath and no member of staff was on hand to stop him from drowning. An entirely preventable death.
You were a cute baby, matey. So blooming cute. Those cheeks. A smile to light up the neighbourhood and beyond. And that laugh….sprinklings of warm deliciousness.
Mum. Was I born in a bath, Mum?
Yes, you were. At home
Mum…Mum? Did I die in a bath, Mum?
I don’t know
(Extract from Justice for Laughing Boy, page 239)
Everyone who reads this book will take something personal from it. Many of you will remember that as a direct result of Connor’s death a group of people in Certitude supporting the 107days campaign [in recognition of the 107 days Connor was in the Assessment an Treatment unit before he died] reviewed our epilepsy support plans to ensure we balance safe care with supporting independence. [We even get a mention in the book!].
Connor loved a bath. At home Sara, Connor’s mum would prop the bathroom door open and keep the chat going while Connor bathed. Connor loved to talk so this worked well to keep Connor safe while having his much loved bath. In the NHS Assessment and Treatment unit staff left Connor alone in the bath unsupervised with the door closed. He had a seizure and died.
This book brings this beautiful laughing boy to life. It also provides a shocking account of a system that let Connor and his family down in the most horrific way possible. They were told that their much loved child died of natural causes. There is nothing natural about drowning in a bath due to an epileptic seizure. The attempts by the CEO and Board – the most senior people in the organisation – not to take accountability for the serious failings and mistakes made are shocking. This is a human rights story, how a system sought to overlook and brush aside the rights to justice of a young man with learning disabilities and autism. Without his family fighting for his right to justice, Connor would be another statistic. One of the 1000 people with learning disabilities or mental health needs whose death in the same NHS Trust where Connor died failed to be investigated. This should be a national scandal.
I have followed these events in real time over the last few years and now reading Sara’s book I inevitably ask myself what it means for us at Certitude, to ensure we learn from Connor’s death. We commit to:
- Always see the whole person with all their assets, skills and characteristics and ensure their epilepsy risk management plan is person centred, agreed with the person and their family, updated regularly and followed by everyone involved in the person’s support
- Work in partnership with families, fully valuing their relationship, seeking their advice and feedback so together we can get the support to their loved one right
- Challenge any practice by any professionals that doesn’t reflect and uphold our person centred approach – seeking support and advice from colleagues, including our own Treat Me Right! team to do this well.
- When things sadly go wrong use all our resources and energy to understand exactly what happened, being open and honest with the person and their family and making sure they know fully the steps we are taking to ensure a full, open and detailed investigation. We will ensure that we and any other professionals involved are held accountable.
- Saying sorry in person and when we say it we mean it
- Do everything in our individual and collective power to make sure we learn from our mistakes and share our learning far and wide so we can help others learn too
Justice for Laughing Boy is a book that should never have been needed to be written. Connor should be here today. He isn’t. The legacy of this charming, funny and talented boy is for people – that includes you and I – to stand firm in our resolve to continue to fight for the rights of all people with learning disabilities to live the life they want to lead: happy, healthy, respected and valued as equals. I can’t recommend Justice for Laughing Boy highly enough. Please share it with your friends and family as the most important, beautifully written and hard-hitting book of 2017.
I would love to hear your feedback on the book and on the action Certitude must take to ensure Connor’s legacy is honoured. I look forward to hearing from you – contact me on twitter @AislingDuffy_ or by email email@example.com. You can follow the campaign at http://justiceforlb.org/
Chief Executive, Certitude
This review was written for and shared with staff internally across Certitude to help us learn from Justice for Laughing Boy