The long road to justice

For Professor Sara Ryan, her work has always been far more than just a job.

Driven by an unshakeable search for justice and desire for change following the heartbreaking and avoidable death of her son Connor Sparrowhawk, Prof Ryan spearheaded a nationwide campaign to change the way people with learning disabilities are cared for.

Connor – lovingly nicknamed Laughing Boy – was diagnosed with autism and learning disabilities as a young child. He was looked after at home by his family, but during one crisis in his teenage years, Connor was admitted to an NHS assessment and treatment unit as there was no other support for the family.

It was during a stay at one of these units in the summer of 2013 that Connor died at the age of 18. He was found unconscious in a bath following a seizure.

A later inquiry and a court case found serious failings with Connor’s care. The subsequent campaign by Prof Ryan helped bring these failings to light with the revelation that the Southern Health NHS Foundation Trust, responsible for the unit where Connor was a patient had also failed to properly investigate more than 1,000 deaths over four years of people with learning difficulties or mental health problems.

But for Prof Ryan, her son’s life has always been a source of inspiration – the campaign around Connor’s death placed positivity at its heart, capturing the attention of people all over the country and further afield.

It was the discovery that Connor had learning disabilities as a young child that led Prof Ryan to focus on disability as an area of interest, later studying for a PhD on the experiences of mothers in public places with ‘unruly’ children. Something Prof Ryan was increasingly experiencing as Connor grew up.

“He was part of a big family, one of five children,” said Prof Ryan.

“He was a really unusual, chatty, loving, generous young man. Hilariously funny. He was just a very unusual little kid and he grew into a sort of unusual young man who had a very developed sense of social justice and injustice.

“I always thought he was an unusually good baby. I was quite struck by how he was so undemanding. And then when he was two, he failed the developmental checks.”

Speaking about the inspiration for her studies, Prof Ryan added: “At that point I was taking an eight-yearold out who was causing quite a lot of consternation amongst other people because he would just lie on the floor at Tesco and not move. Kids like that don’t follow social rules because he didn’t really get them.

“So I focused my PhD on that subject and then went on to get a job at Oxford University researching people’s experiences of being autistic and families’ experiences of having an autistic daughter or son.

“There was this parallel work – life mirroring what was happening at home which was quite interesting.”

Prof Ryan continued her work at Oxford University before joining Manchester Met in 2021, part of a growing hub of expertise and research focused on how to better support and work with people with learning disabilities.

She said: “There was such a contrast between the research that was being done around kids, autistic children or children with learning disabilities and what we were experiencing as a family.

“The research was in part to try and counteract the medical model of saying that people like Connor were a burden and were difficult.

“Family carers were stressed and exhausted, but partly because they have to fight to get the appropriate support to enable everybody in the family to flourish.”

It was the availability of this external support that was to become central to Prof Ryan’s focus and later campaign.

During Connor’s early years, there was some financial support available but fewer opportunities to access people who can directly provide support. By the time Connor was 17, the family turned to an NHS specialist unit which was just down the road from their old home in Oxfordshire.

Prof Ryan said: “But then Connor, when he turned 18, he literally transformed from being the most joyful, delightful person to hang out with to being somebody who was obviously really struggling. He became uncharacteristically aggressive, distressed and agitated, and he started lashing out in a way he’d never done before.

“He had a younger brother who was 11 at the time and some of the other children had left home by that point or were at university. We got to a stage where we had to ask for help because we didn’t know what to do.

“He was admitted to the unit in March 2013 and it was one of the worst nights of my life. He was sectioned that night: he went in as a voluntary patient and was sectioned because he lashed out at the staff and ended up being under this whole series of sections. He suddenly became a sort of mental health patient.

“He was in the unit for 107 days and I was blogging at the time. I’d written a really lovely blog about life with Connor called ‘My Daft Life’, and this blog became a record of the days he spent in the unit.”

During Connor’s stay he had also been dealing with epilepsy, which he had been diagnosed with at 16. There had been early warning signs for Prof Ryan about the unit, as during one visit she realised that Connor had experienced a seizure that hadn’t been picked up by staff. Prof Ryan was reassured that this would never happen again.

But then, on 4 July 2013, the unthinkable did happen.

“He was going to visit the Oxford bus company because he loved buses and it had been arranged for him to visit and have a tour,” said Prof Ryan.

“And he went and had a bath in the morning and drowned while the staff were about seven feet away from him in an office.”

She added: “Every so often I think back and then I think back to that that day in particular. The whole situation you can’t put it into words – I still can’t put it into words.

“We went home eventually from the hospital and then I tweeted because the blog had quite a big following. At that point it was anonymous and it just obviously bounced around and quite a few people followed it.

“I think at some point on that day, I just posted a one liner to say that Connor died that morning because it seemed dishonest not to say.”

Prof Ryan’s online presence helped inadvertently steer their next steps, bringing in support from all corners. The inquest into Connor’s death would mean the family would need legal representation, which sparked the campaign that became known as Justice for Laughing Boy.

“We got our legal representation lined up then we started fundraising as it would cost about £25,000,” said Prof Ryan.

“Connor was a brilliant artist and so we started selling postcards of his artwork for a pound each. My mum did the post office runs.

“I linked up with somebody called George Julian, who’s a knowledge transfer consultant, on Twitter. And the pair of us got the hashtag #JusticeforLB because it was Justice for Laughing Boy.

“And we started this really random, spontaneous, uncoordinated campaign that captured people’s imagination in a way that you wouldn’t expect. I think that’s partly because we tried to get people to join in any way they could.

“It didn’t matter what people could do, whether they wanted to buy postcards or hold a cake sale to raise money or do a lecture in Connor’s name or anything at all.

“People started drawing pictures of buses and sharing those on social media. Somebody started making these crowdsourced quilt patches for a quilt that eventually went on to be displayed in the People’s History Museum in Manchester, as well as other places.

“A Brownie pack in New Zealand drew pictures of buses in the playground.”

The family reached out to David Nicholson, who was the then chief executive of NHS England and he agreed to meet. He quickly ordered an investigation into what happened at the unit and Trust. The subsequent report caused waves in the national media and prompted a response from the then Secretary of State for Health, Jeremy Hunt.

The years passed but the family’s desire to see justice never stopped and the Southern Health NHS Foundation Trust pleaded guilty to breaching health and safety laws and was fined £2m, both in the case of Connor’s death and that of another patient in its mental health services. The Trust admitted ‘systemic failures’.

And while a court ruling would never mend the family’s broken heart, it did focus minds to ensure that the same would never happen again, something that Prof Ryan had been striving for all along.

Prof Ryan later captured her experiences in a special book, Justice for Laughing Boy: Connor Sparrowhawk – a Death by Indifference, which was published in 2017.

And while the campaign may have ended, the work to contribute to making services and support better for, and with, people with learning disabilities continues through Prof Ryan’s life as a researcher at Manchester Met.

She said: “There’s a real bringing together of expertise in the area of people who work in research, people with learning disabilities, autistic people, family carers, third sector organisations, health and social care professionals, and wider.

“And the research is intended to be impactful and make a difference, either in terms of policy, support or care – or simply being human, working closely with people and organisations that use that research to influence their practices. “It’s a real strength area for the University at the moment.”

Making a difference

Researchers at Manchester Met were at the forefront of ensuring people with learning disabilities weren’t left behind during the COVID-19 pandemic.

Live research was taking place while the pandemic was at its height and the country experienced repeated lockdowns.

Professor Chris Hatton was part of the Coronavirus and People with Learning Disabilities Study, which tracked the experiences and views of adults with learning disabilities throughout the pandemic.

For millions around the world, lockdowns were a difficult experience as people became cut off from friends and family.

But for people with learning difficulties and their carers this often meant their vital support was cut off completely – or they faced a heightened sense of fear once restrictions were lifted.

These studies captured the experiences of people with learning difficulties which helped to inform the response of services to help people with learning difficulties while living under COVID.