‘Signs of improvement’ in data on learning disability deaths

This improvement is thanks to work by learning disability nurses and other initiatives that have improved access to health services for people with a learning disability, Nursing Times has been told.

“Work needs to be done to make sure there is consistent availability of learning disability nurses”

Jonathan Beebee

The seventh annual Learning from lives and deaths – people with a learning disability and autistic people (LeDeR) report, published in November, found that 42% of deaths in adults with learning disabilities England in 2022 were classified as “avoidable”.

Although still very high compared to the general population (22%), this is a significantly lower rate of avoidable death in people with a learning disability than has been seen in previous years.

In 2020 and 2021, 50% of deaths in adults with a learning disability were deemed avoidable, while this figure was 52% in 2019 and 54% in 2018.

The LeDeR report also found a consistent year on year increase in length of life in people with a learning disability since 2018. The median age at death of someone with a learning disability in 2022 was 62.7 years compared with 62.1 in 2021 and just 60.1 in 2018.

Far fewer people with a learning disability died of Covid-19 during 2022 compared to 2021 and 2020, according to the LeDeR report. A contributing factor was the successful roll-out of the Covid-19 vaccination programme to people with a learning disability, with reasonable adjustments made where necessary.

The report identified fewer concerns about the care of people with a learning disability who died during 2022 than in 2021. It found a trend for high ratings of overall quality of care as well as of availability and effectiveness of care in deaths occurring in 2022 compared with 2021.

Royal College of Nursing professional lead for learning disability nursing Jonathan Beebee told Nursing Times these figures showed that the situation had improved and were “definitely some cause for celebration”.

“There have been some really positive initiatives to try and improve access to health services for people with learning disabilities,” Mr Beebee said. “The improvements [we’re] seeing may be a sign that some of them have had a big impact.”

Mr Beebee said that an increase in the number of learning disability liaison nurses in hospitals was likely one of the reasons that avoidable deaths had dropped in people with a learning disability.

“There’s been an increase in the availability of acute learning disability liaison nurses who are available to hospitals, and we know that that has a significant impact on outcomes for people when they attend an acute hospital,” he said.

Jonathan Beebee

Other initiatives that may have contributed to reducing avoidable deaths in people with a learning disability include efforts to improve immunisation rates in people with a learning disability and greater awareness around the risk of constipation in this patient group.

In addition, efforts to ensure people with a learning disability have an annual health check have played an important role, Mr Beebee said.

“We know that great effort has gone into making sure that everyone with a learning disability has their annual health check, and more is being done to ensure that health passports are up to date, that the NHS systems flag people with learning disabilities so [staff] know to look for the health passport and look at what reasonable adjustments people need,” he said.

However, the LeDeR report found that people with a learning disability are still on average dying over 20 years earlier than the general population, where life expectancy is over 83 years for men and 86 years for women.

The authors of the report said they “believe that things may not be improving fast enough, and overall care and outcomes all too often still fall below acceptable standards compared to the general population”. “This is true even with the good and hard work performed by care professionals throughout England,” they added.

The report also highlighted continuing disparities in life expectancy between people with a learning disability from different ethnic backgrounds. People from minority ethnic backgrounds were more likely to die at younger ages than those who were White.

“Improvements during 2022 should certainly be celebrated, but we shouldn’t overlook how much we still don’t know”

Andre Strydom

Other areas of concern highlighted in the report included a rise in the number of people with a learning disability whose death was caused by cardiovascular disease, from 14% in 2020-21 to 16.7% in 2022.

In addition, there was a spike in deaths reported to LeDeR in July 2022 at the time of a heatwave, that could not be attributed to Covid-19 or any outbreak of disease.

The report concluded that, with climate change, extreme weather events were likely to happen more frequently, and that “guidance and adaptations may need to be considered to protect vulnerable individuals during extreme weather”.

Chief investigator on the LeDer report and professor in intellectual disabilities at the Institute of Psychiatry, Psychology & Neuroscience at King’s College London, Professor Andre Strydom, said: “People from ethnic minority groups died younger, and there is a need to improve access to care pathways to improve prevention and better manage some conditions in people with a learning disability, such as cancer, lung, heart and circulatory conditions.”

He added that in light of the “concerning effect” on excess deaths of people with a learning disability during heatwaves, care homes and hospitals looking after people with a learning disability needed to be better prepared for weather events in the light of climate change.

“Improvements during 2022 should certainly be celebrated, but we shouldn’t overlook how much we still don’t know,” Professor Strydom concluded.

Looking to the future, Mr Beebee said that further reductions in unnecessary deaths in people with a learning disability could be expected as a result of the mandatory learning disability and autism training that is already being rolled out to meet the legal requirement introduced in England in 2022.

The Oliver McGowan code of practice, outlining the standards that this training will have to meet, has finished its period of consultation and is expected to be published this year.

The code is named for the teenager with a mild learning disability and autism who died in November 2016 after he was given antipsychotic medication, even though he and his family warned it could be harmful. His death was determined to have been potentially avoidable by an independent review.

Mr Beebee said that when fully rolled out this training would “definitely” have an impact on avoidable deaths in people with a learning disability.

“It’s going to mean that there is a greater awareness of what people with learning disabilities need when accessing health services,” he said.

But he warned against seeing increased training in learning disabilities as a “panacea”.

“It won’t stop the complexity of needs that people with learning disabilities have,” he said. “Whilst it’s great that all services will have a better understanding of learning disabilities and will be more accessible, it doesn’t do away with the need for more learning disability nurses.”

Mr Beebee said that although there had been an increase in the number of learning disability nurses working in liaison roles in hospitals, the overall number of learning disability nurses on the Nursing and Midwifery Council (NMC) register has been in decline.

This means that availability of learning disability nurses across the UK is uneven.

“Work needs to be done to make sure there is consistent availability of learning disability nurses,” Mr Beebee said.

“Wherever someone with a learning disability goes in the UK, they should know with confidence that that acute service has got access to the same level of learning disabilities expertise and nursing.”

He said that part of the problem was the lack of a clear career pathway that would tempt student nurses to choose a career in learning disability nursing.

“We’re not attracting student nurses and we’re not able to fill jobs,” he said.

“The student nurses who are coming through are choosing not to go for learning disability nursing jobs. They’re choosing to go for a job on a surgical ward or cancer ward, because that gives them the validation that they’re doing a ‘real nursing job’ and they feel like they’ve got stability in their career.”

A learning disability workforce summit to address these issues is planned for May this year, in partnership between the RCN Learning Disability Forum, the UK Learning Disability Nurse Consultant Network and the Learning and Intellectual Disability Nursing Academic Network.