People with a learning disability in England are less likely to die avoidably in 2022 than in previous years, according to the latest data.
The improvement is thanks to the work of learning disability nurses and other initiatives that have improved access to health services for people with learning disabilities, reports Nursing Times.
“We need to work to ensure there is always a supply of learning disability nurses.”
Jonathan Beebe
The seventh annual report, Learning from Life and Death – People with Learning Disabilities and Autism (LeDeR), published in November, found that 42% of deaths of adults with learning disabilities in England in 2022 were classed as “avoidable”.
Although still very high compared with the general population (22%), this is a significantly lower figure for avoidable deaths among people with a learning disability than in previous years.
In 2020 and 2021, 50% of deaths among adults with a learning disability were considered preventable, up from 52% in 2019 and 54% in 2018.
The LeDeR report also found that life expectancy for people with a learning disability has increased consistently year on year since 2018. The average age at death for people with a learning disability will be 62.7 years in 2022, compared to 62.1 years in 2021 and just 60.1 years in 2018.
The LeDeR report found that the number of people with learning disabilities who died from COVID-19 in 2022 was significantly lower than in 2021 and 2020. This is partly due to the successful rollout of the COVID-19 vaccination programme for people with learning disabilities, with appropriate adjustments made where necessary.
The report confirmed there were fewer concerns about the care of people with learning disabilities who died in 2022 than in 2021. It found there was a trend towards higher ratings of the overall quality of care, and the availability and effectiveness of care, among deaths that occurred in 2022 compared with 2021.
Jonathan Beebe, specialist lead for learning disability nursing at the Royal College of Nursing, told Nursing Times that the figures showed the situation was improving and were “definitely something to celebrate”.
“There have been some very positive efforts to try to improve access to health services for people with learning disabilities,” Beebe said. [we’re] The fact that we see them may be a sign that some of them have had a major impact.”
Mr Beebe said an increase in the number of learning disability liaison nurses in hospitals was likely one of the reasons for the fall in avoidable deaths of people with learning disabilities.
“We are increasing the number of acute learning disability liaison nurses available in hospitals and we know this has a huge impact on outcomes for patients attending acute hospitals,” he said.
Jonathan Beebe
Other initiatives that may have contributed to reducing avoidable deaths in people with learning disabilities include efforts to improve vaccination rates in people with learning disabilities and raising awareness of the risks of constipation in this patient group.
Additionally, efforts to ensure that people with learning disabilities have access to annual health checks also play a key role, Beebe said.
“We know that great efforts are being made to ensure that everyone with a learning disability has an annual health check, and we also know that more is being done to ensure health passports are up to date and that the NHS system is flagging up people with a learning disability. [staff] “It’s important to look at health passports and see what reasonable accommodations people need,” he said.
But the LeDeR report found that people with learning disabilities still die, on average, more than 20 years earlier than the general population, who have a life expectancy of just over 83 years for men and 86 years for women.
“We believe that the situation may not be improving quickly enough and that overall care and outcomes are still often below acceptable standards compared with the general population,” the report’s authors said. “This is despite the excellent and hard work of care professionals across England,” they added.
The report also highlighted the continuing disparities in life expectancy between people with learning disabilities from different ethnic backgrounds, with those from ethnic minority backgrounds more likely to die younger than their white counterparts.
“The improvements in 2022 are certainly something to celebrate, but we shouldn’t overlook the fact that there is still a lot we don’t know.”
Andre Strydom
Other concerns highlighted in the report include an increase in the number of people with learning disabilities who die due to cardiovascular disease, from 14% in 2020-21 to 16.7% in 2022.
Additionally, during the July 2022 heatwave, LeDeR reported a spike in deaths that could not be attributed to COVID-19 or any other disease outbreak.
The report concludes that extreme weather events are likely to become more frequent due to climate change and that “guidance and adaptation measures to protect vulnerable individuals during extreme weather events may need to be considered.”
Professor Andre Strydom, lead investigator of the LeDer report and professor of intellectual disability at the Institute of Psychiatry, Psychology and Neuroscience, King’s College London, said: “People from ethnic minority groups are dying at younger ages and we need improved access to care pathways to improve the prevention and management of some diseases in people with learning disabilities, such as cancer, lung, heart and circulatory disease.”
He added that care homes and hospitals looking after people with learning disabilities needed to take climate change into account and better prepare for weather events, given the “worrying impact” of heatwaves on excess deaths among people with learning disabilities.
“The improvements in 2022 are certainly something to celebrate, but we should not lose sight of the fact that there is still a lot we don’t know,” Prof Strydom concluded.
Looking to the future, Beebe said we can expect to see further reductions in unnecessary deaths of people with learning disabilities as a result of compulsory learning disability and autism training already in place to meet legal requirements due to be introduced in 2022 in England.
The Oliver McGowan code of conduct, outlining the standards the training must meet, has completed a consultation period and is due to be published later this year.
The code is named after a teenager with mild learning disabilities and autism who died in November 2016 after being given antipsychotic drugs despite warnings from him and his family that they could be harmful. An independent investigation determined his death may have been avoidable.
Mr Beebe said the training, if implemented across the board, would “certainly” have an impact on avoidable deaths of people with learning disabilities.
“This will mean there will be greater awareness of what people with learning disabilities need when accessing health services,” he said.
But he warned against viewing increased training on learning disabilities as a “panacea”.
“You can’t eliminate the complex needs that people with learning disabilities have,” he says. “It’s great that all services can become more aware of learning disabilities and be more accessible, but it doesn’t eliminate the need for learning disability nurses.”
Ms Beebe said that although the number of learning disability nurses working as liaison roles in hospitals was increasing, the overall number of learning disability nurses registered with the Nursing and Midwifery Council (NMC) was falling.
This means that the availability of learning disability nurses across the UK is uneven.
“We need to work to ensure there are learning disability nurses available,” Ms Beebe said.
“Anyone with a learning disability should be able to be confident that wherever they go in the UK, they will receive the same level of learning disability expertise and care in the acute service.”
He said part of the problem was a lack of a clear career pathway that would entice nursing students to choose a career in learning disability nursing.
“We’re not attracting nursing students and we’re not getting the manpower to fill the jobs,” he said.
“Nursing students coming in aren’t choosing to work in learning disability nursing. They choose to work on surgical or oncology wards because it shows they are doing ‘real nursing’ and gives them a sense of career security.”
A Learning Disability Workforce Summit to address these issues will be held in May this year in collaboration with the RCN Learning Disability Forum, the UK Learning Disability Nursing Consultant Network and the Learning and Intellectual Disability Nursing Academic Network.