People with learning disabilities are dying 20 years early, report finds: ‘They deserve better’

David Lodge lay by his dead father’s side for days before they were found. The 40-year-old with multiple physical and learning disabilities had no way of raising the alarm to let people know he desperately needed help. David’s father had been his full-time carer, and David didn’t know what to do or how to feed himself when he was alone.

He was severely dehydrated and physically frail but still alive when they were discovered.

David was admitted to hospital but a series of medical failings led to his death, as found by the coroner. There was a “lack of urgency” to escalate his care, and staff gave him sedatives which he “probably didn’t need” and “put extra strain on his body”.

He had a cardiac arrest and died. The coroner concluded that a referral to critical care or intensive care could have prevented his cardiac arrest.

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People with learning disabilities die 19.5 years younger on average than the general population, at around 62.5 years old, according to a report published in September by King’s College London in collaboration with NHS England.

The Learning from Lives and Deaths Report – known as LeDeR – also found that people with a learning disability are three times more likely to die from a condition that could have been treated.

David’s sister, Dr Keri Lodge, is one of three people to have spoken to the Big Issue about the death of a loved one with a learning disability. Alongside charity Mencap, they are calling for change so no other individual faces the “traumatic” experiences their family members did in the final days of their lives.

Keri, who is a doctor, says: “I would have liked them to have put to one side the fact that he had a learning disability and treated him the same as any other 40-year-old man who hadn’t had anything to eat and drink for a number of days, was extremely weak and needed urgent, acute medical attention.”

Nearly four in 10 deaths of people with a learning disability in 2023 were ‘avoidable’, defined as cases where a death was preventable or their condition was treatable. More than one in 10 deaths were believed to be entirely preventable.

Jon Sparkes, chief executive of Mencap, says: “People with a learning disability and their families deserve better. In this day and age, no one should die early because they don’t get the right treatment.”

David, who was blind and had lost his mobility, was “bright” and “witty”, Keri says. 

“He was a rare sunshine. He had his challenges, but it didn’t detract from the cheeky, mischievous person that he was, and he got through so many challenges without letting them get him down. He carried on. He was warm and had a sense of fun and was caring. He was just David.”

Keri believes medical staff did not see David as a person beyond his disabilities.

“They didn’t consider escalating his care to critical care or to the ICU. I can’t help but think: ‘That’s because you don’t value him. You didn’t see him as a human being. You didn’t value his life. You made the decision that he wasn’t worth that extra care.’ 

“People see David as a problem and they forget he is a person. He was a man who needed urgent medical attention. It doesn’t matter that he had a learning disability.”

A spokesperson for Humber Health Partnership, the trust responsible for David’s care, said: “We would like to extend our deepest condolences to the family of Mr Lodge and apologise that he did not receive the standard of care we strive to deliver for all patients when he was brought to our hospital.

“As we outlined in our response to the coroner earlier this year, we always try to learn where processes could be improved and, following Mr Lodge’s death, have changed processes to ensure all patients, including those with learning difficulties, receive compassionate care and treatment at all times.”

David is not alone. Charlie Lander died three years ago after a sequence of medical failures and “neglect” led to his death. 

“We loved Charlie so much,” says his sister Alex. “He was always a central part of our family. He was always there. From the moment I was born, I had an older brother with learning disabilities. It was such a normal part of my life.”

Charlie had severe learning disabilities and was non-verbal, and he had a rare eating disorder Pica which meant that he craved and consumed non-food items. He lived in a care home most of his life, which Alex says went to “great efforts” to keep him safe. 

But ultimately the “only real way Charlie could have been completely safe was to be in a locked room with nothing in it” and “that would have been no way to live”. 

Charlie died due to a small bowel obstruction having eaten a plastic medical glove in June 2022. Medical staff failed to realise that he should have been operated on. 

He was left in a corridor outside A&E, without a learning disability nurse, and he was not given antibiotics for hours despite the markers for sepsis being high. His mother was not contacted, so he did not have any family members with him.

“He was found to be on his own when he died,” Alex says. “His carer had gone on a break. Charlie had nobody. He needed somebody there. This poor vulnerable person had nobody to speak for him.”

A coroner ruled that medical misadventure and neglect had led to Charlie’s death.

“Charlie was his own worst enemy, in the fact that he chewed and swallowed plastic, but he didn’t deserve to die at 49. Had he been operated on and cared for properly, he likely would have lived,” Alex says.

Dr Mark Roland, Chief Medical Officer at Ashford and St Peter’s Hospitals NHS Foundation Trust, said: “We sincerely apologise for the failings in our care which contributed to the very sad death of Mr Lander and our thoughts remain with Mr Lander’s family and loved ones.

“The trust is committed to reducing health inequalities for individuals with learning disabilities and has made significant improvements since 2022 to enhance the quality of care we provide.”

It now has a full-time learning disability liaison nurse and an enhanced care lead who works closely with the learning disability team. 

It claims it has strengthened its investigatory process into patient safety and has committed to implementing Martha’s Rule, which empowers patients and families to seek an urgent, independent medical review when they believe a patient’s condition is worsening and their concerns are being ignored.

In 37% of deaths of people with learning disabilities in 2023, there was some form of delay in care or treatment. Meanwhile, 28% of cases saw instances where diagnosis and treatment guidelines were not met.

“I just find it absolutely astounding that we live in a society where this can happen,” Alex says. She adds that Charlie’s life was “valuable and important”. He taught her about “compassion and looking out for other people and giving everybody a voice”.

“Speaking out now is raising awareness for people that will come after Charlie. There will be other Charlies. They will be in a vulnerable position in a hospital. I want to make sure somebody thinks twice about how that person is treated.”

There has been some improvement. The percentage of avoidable deaths fell from 46% in 2021 to 39% in 2023, and the life expectancy of a person with a learning disability has increased – if only by a few months, from 62.1 to 62.5.

Sparke said he is “pleased that overall life expectancy has improved” and said this is evidence that measures that the NHS have implemented are working, such as the learning disability register, annual health checks and mandatory Oliver McGowan training on learning disability.

But he added that “there is still a huge amount of work needed to improve the life expectancy of people with a learning disability”, particularly in Black and Asian communities who face the impact of additional intersectional inequalities.

The Big Issue previously reported on how people with learning disabilities were not resuscitated during the pandemic.

An NHS spokesperson says: “While this report shows encouraging progress, it is clear there is much more to do to meet the needs of people with a learning disability and autistic people.

“The NHS has rolled out training to more than three million health and care staff to improve the care offered to patients, and all disabled people have a ‘reasonable adjustment digital flag’ so they are recognised and care for appropriately when getting NHS support.

“The NHS also remains committed to reviewing every death that is notified to LeDeR to make sure lessons are learned to reduce avoidable mortality and health inequalities.”

Another individual who faced medical failings which contributed to premature death is Chloe Every, who died aged just 27. She was a “vibrant young woman”, her aunt Lisa Every says, and “everyone loved her”. She had learning disabilities and myotonic dystrophy, a genetic disorder which causes muscle loss and weakness.

An investigation conducted by the NHS trust found a series of failings leading up to her death. She had been admitted to hospital with symptoms of bowel cancer in 2019. Within 12 days, she had died. 

Her aunt says it was not because of the cancer but because she had choked and had a cardiac arrest while unmonitored in a general ward.

“She did not have to die like that,” Lisa says. “It would have been kinder to shoot her at the door than to put her through what they did for 12 days. They traumatised her.”

Chloe was left in the initial assessment unit for six days too long, preventing her from receiving care. There were no learning disability nurses, and the specialist who had worked with Chloe for 18 years was not notified, likely impacting the care she received as a patient with myotonic dystrophy.

She was prescribed morphine, despite it posing a risk to people with her condition, and suffered a cardiac arrest. Doctors “broke all her ribs” to restart her heart. At the same time, her organs started to shut down.

“She should have been put into palliative care and maybe she would have lived six months or a year, and her friends and families would not be traumatised,” Lisa adds.

The investigation found that Chloe was not observed in line with her needs by the nursing team prior to being given an enema.

An irregular heartbeat was noted shortly before the enema was administered but was not relayed to a doctor. Chloe was transferred to a general ward and Lisa, who had been by her side throughout her stay in hospital, was told to go home. 

That night, Chloe was not properly observed. She choked and had a second cardiac arrest. When Lisa returned early the next morning, she discovered that Chloe had died.

Matthew Trainer, chief executive of Barking, Havering and Redbridge University Hospitals NHS Trust, says: “We are extremely sorry Chloe did not receive the care she should have in our hospital. We’d also like to apologise to her family for the distress caused by our initial investigation into her death, which was not thorough enough.

 “We hope it provides some small comfort that since her death in 2019 we have taken steps to improve care for patients with learning disabilities.”

The trust claims to have implemented mandatory learning disability and autism training for all staff and to be recruiting more nurses with learning disability qualifications and experience.

“There has to be a learning disability nurse who takes responsibility in a clinical way. Someone has to be accountable,” Lisa says.

The trust also said the pharmacy team have used learnings from Chloe’s experience to improve care and safety for patients, including increased awareness of drug use in patients with chronic conditions and special needs.

It has also introduced a 24-hour critical care outreach team to review observations and identify patients at risk of deteriorating.

Lisa says she will never be able to forgive the hospital for what Chloe went through. “Chloe would have died anyway. But it was a matter of how and when. She was traumatised for the last 12 days of her life. It is unforgivable. I will never forgive them.”

Mencap is calling for neighbourhood health schemes to work with people with a learning disability on a local level to make services accessible and for GPs to prioritise getting people onto the learning disability register and completing annual health checks.

Stephen Kinnock, the minister for care, said in response to the LeDeR report that it is “unacceptable” that people with learning disabilities are still dying 20 years earlier than the general population.

He said: “Together with NHS England and partners, we are committed to driving further improvements, implementing our 10-Year Health Plan and working towards healthcare that is equitable and provides the quality of care that people with a learning disability and autistic people should rightly expect.”

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