No more preventable deaths: how to end indifference and bring about change

This article is based on a talk given by Sara Ryan, Professor of Social Care at Manchester Metropolitan University, at our health and wellbeing and conference on 12th September 2024. 

Sara Ryan is Professor of Social Care and Manchester Metropolitan University with a portfolio of NIHR funded projects focusing on learning disabilities, autism, growing older, loneliness and the experiences of giving evidence at Fitness to Practice hearings. But Sara is not just a professional in the field of learning disability and autism, she is also an expert by experience.

Sara’s son, Connor Sparrowhawk had a learning disability, autism and epilepsy. Tragically, Connor died in an NHS care unit in 2013 when he was just 18 years old. Connor needed careful supervision due to his epilepsy, but despite this, he was left unattended in a bath and drowned.

It took four years of fighting before the NHS trust admitted systemic failures and pleaded guilty to breaching health and safety laws, but Sara and her family did not stop there. In 2017, Sara published her book, Justice for Laughing Boy: Connor Sparrowhawk – A Death by Indifference, which helped to raise awareness of the very real consequences of poor NHS care and treatment.

To spread this message even further, earlier this year, Stephen Unwin, an experienced theatre director and father to a son with a learning disability, adapted Sara’s book into a play. The play tells Connor’s story while also reminding the audience that his story is not entirely unique.

The problem with diagnostic overshadowing

At the LDT and Kingston conference, Sara opened her talk with a photo montage which showcases 18 people with a learning disability and/or autism who have died preventable deaths in NHS care units since Connor died. This photo represents just a snapshot of the premature and avoidable deaths in the learning disability community over the past decade.

Sara says one of the key reasons people with learning disabilities die earlier than the general population is due to diagnostic overshadowing. This practice leads healthcare professionals to see the learning disability before the person. They may therefore assume that a person with a learning disability’s behaviour is part of their learning disability without exploring other factors such as biological determinants.

“We know that people with a learning disability die long before everyone else, and yet a learning disability isn’t a medical condition, it’s a label. And what this leads to is mistreatment, poor care and earlier deaths,” Sara said.

Sara says healthcare professionals may also have skewed views on what a learning disability looks like. For instance, a systematic review in 2017 found that some healthcare professionals believe that people with learning disabilities are “childlike, funny, strange or intimidating.”

“If [doctors] have been educated for six years or longer… but there has been no learning disability training during that education, how can they really see the person? Doctors have all this weight of knowledge, and for someone to come in and just see a learning disability… it’s absolutely fascinating to me. It’s absurd,” she said.

What can we do to improve health outcomes for people with a learning disability?

Various policy papers have been introduced to improve health outcomes for people with a learning disability. For instance, in 2008, Sir Jonathan Michael published Healthcare for all: An independent inquiry into access to healthcare for people with learning disabilities. The report recommended introducing annual health checks, partnership working with people with learning disabilities and their families, staff training, and setting up a national confidential inquiry into the premature deaths of people with a learning disability.

This confidential inquiry published its findings in 2013. It recommended setting up a national review board which would investigate premature and preventable deaths and make recommendations to avoid repeat mistakes. But this review board was never set up as the government said it was too expensive. While the government did introduce annual health checks, uptake is still low, with a recent report finding that just one quarter (26%) of people with learning disabilities are on the learning disability register.

“We have to ask ourselves, how and why are we doing so badly? How, in 2024, are people being failed over and over again?” Sara asks.

To improve things for the better, Sara says there needs to be:

• Clear identification of people with learning disabilities in GP surgeries
• More consistent health checks
• Increased awareness of learning disability among health and social care professionals through rigorous training.

“My heart sinks when I say this, but we do have to be doing more training. But really, saying we have to train staff in our national health service is ludicrous,” she said.

Sara says it is also vital that healthcare professionals listen to people with learning disabilities, their family members and support workers. Failure to do so is to be ignorant of what it is like to be a person with a learning disability, and this ignorance is a form of discrimination, she says.

Another key problem facing people with learning disabilities in overmedication. In England, around 30 to 35,000 people with learning disabilities are prescribed medication by their GP without a medical reason.

“People [with learning disabilities] are given too much medication and there is a low rate of reviewing that medication… The doctor’s job is to check people’s medication regularly. If you have a learning disability, you get put on medication and you may be left on it forever,” Sara said.

In addition, Sara says that while learning disability is not a medical condition or a reason to die early, it is often reported on death certificates as a cause of death.

“This means the data we have on death is patchy because it’s not accurate data, so we can’t improve things,” she said. “I think this is a public health issue, as poor reporting hides deaths that might have been preventable. This further weakens the reliability of the data we have, so we’re on a downward spiral again.”

Fostering wellbeing: giving people the opportunity to do what they love

A key part of improving the health of people with a learning disability is by focusing on their wellbeing. In order to discover how to do this, Sara and a team of researchers conducted a research project about the importance of having the opportunity to do the things we value.

She said working out how to improve people’s wellbeing was difficult to begin with, but eventually the team had a breakthrough. They asked people with learning disabilities, their families, support workers and care providers ‘What is really important to you?’ and ‘What do you love doing?’

One of the support workers said she loves listening to 10 minutes of Britney Spears in the morning, as it sets her up for the day. Without missing a beat, she said she also supports a man who likes to sit with the wind on his face.

She said: ‘My 10 minutes of Britney is his 10 minutes of sitting with the wind on his face, and yet I can’t put this in his care plan because the CQC will come in and say he’s not doing anything.’

So, Sara supported a team of two people with learning disabilities and two family carers to a take this concept one step further; they travelled around the UK and asked between 200 and 300 people what their ‘10 minutes of Britney’ is.

“What has been absolutely unbelievable is that, so far, they have all been free and easy to do. Someone said they liked watching reruns of Coronation Street on YouTube, someone liked singing in the kitchen, someone liked making a cup of tea in their favourite mug at home, while another liked being with their pet in the garden… No one has said they would love to go to Ibiza in a five-star hotel. They are all such tiny things.”

“The key thing to ask ourselves is how we can show and demonstrate these little importances,” Sara says. “Once you start thinking about it, it makes your own life much better because we start paying attention to things that matter. But we don’t know what people’s 10 minutes of Britney are because we don’t ask them.”

Sara suggests we could also match support workers to people with learning disabilities based on what they like to do. If you both love walking, it’s an activity you can do together, with anyone else who also loves walking able to join in.

Moving forward

Ultimately, Sara says we know how to improve outcomes for people with a learning disability, all we need to do is implement what we know.

“There is a repeated carelessness around basic healthcare and treatments, and there is an assumption that people will die earlier,” Sara said. “It seems the lives of people with a learning disability simply do not matter. People [with learning disabilities] die of things like constipation, scabies and choking – they die of things nobody else dies of.”

“We know that things need to get better. We have a list of recommendations that are an arm long. We know simple things like health checks aren’t working properly. We keep talking about more training, and yet people with learning disabilities are described as ‘child like’ and ‘a bit strange’.

“We do know, we should know, and we can do this,” she concludes.

Cartoon illustrator: Grace Barnes

Lauren Nicolle

Lauren is a qualified journalist who writes primarily across the health and social care sectors. She is passionate about exposing the injustices faced by people with a learning disability, with a particular focus on equal access to healthcare.

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