People with learning difficulties and those with autism are not receiving the same standard of healthcare as the general population leading to shorter lives and many more avoidable deaths, according to data from recent studies.
The annual Learning Disability Mortality Review (LeDeR), published at the end of November, found that people with learning difficulties in the UK live shorter lives and the chances of their deaths being classed as ‘avoidable’ is almost double that of the general population.
The LeDeR found that of the 2,054 adults with a learning disability who died in 2022 and had a completed recorded underlying cause of death, 853 (42%) had their deaths classified as avoidable.
Although this was lower than the 2021 figure of 50% of avoidable deaths among adults with a learning disability, it remains “significantly higher” than the percentage for the general population across the UK, which was 22.8% in 2020, the latest data available.
The authors of the LeDeR report said: “We 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.”
Academics at Kingston University with researchers from King’s College London and the University of Central Lancashire compiled the report as part of the NHS England and NHS Improvement-funded LeDeR programme to improve healthcare for people with a learning disability and autism, reduce health inequalities and prevent early deaths.
The LeDeR report also reveals concerning trends in the number of people with learning disabilities who die during heatwaves, as well as disparities among ethnic minority groups and those living in the most deprived areas.
Professor Irene Tuffrey-Wijne, leader of the Staying Alive and Well co-production group that helped with the report and a Professor of Intellectual Disability and Palliative Care at Kingston University said:
“It is good to see that risks of premature death can decrease with good levels of care and reasonable adjustments, but we cannot sugar-coat the stark truth that people with learning disabilities still die several decades earlier than the general population, and that many of these deaths are avoidable.”
Dan Scorer, Head of Policy and Public Affairs at Mencap noted:
“Whilst the report shows evidence of an increase in life expectancy for women with a learning disability, they are still dying 23 years earlier than women in the general population. In addition, with deaths of people with a learning disability living in the most deprived areas at 3 times the level of those living in the least deprived areas, there’s no room for complacency.”
He added that urgent action is needed to address the fact that people from Black, Asian and minority ethnic backgrounds are at a much-increased risk of experiencing health inequality and premature death.
The most commonly reported underlying causes of death were related to diseases of the circulatory, respiratory or nervous systems.
The report recommended prevention and better management of avoidable and long-term conditions in adults, particularly among 25 to 49-year-olds, improved management of specific long-term and recurrent conditions, and addressing reasons for increased risk of avoidable death in males compared with females.
The report also noted “a concerning effect on excess deaths of people with a learning disability during heatwaves, which may become more frequent in the future due to global warming.”
For the first time, this latest LeDeR report investigated deaths of autistic adults without a learning disability, due to concerns that autistic people may also experience health inequalities that could lead to avoidable deaths. The number of reviews included, however, was small at just 36 and the authors noted that “only limited conclusions can be made”.
The authors described inclusion of data for autistic people as a separate group for the first time as “a step towards improving information and data collection on the causes of death for autistic people in England”.
The importance of including such data in the LeDeR report is backed up by two studies also published in November that focus on autistic people and health inequalities.
A study published in The Lancet Regional Health – Europe, of thousands of autistic people with and without a learning disability found that they have a reduced life expectancy compared to the general population.
This study is the first to estimate the life expectancy and years of life lost by autistic people living in the UK.
The researchers, led by those at University College London, used anonymised data from GP practices across the UK to study people who received an autism diagnosis between 1989 and 2019.
In total, 23,580 people were included in the study. Of these, 17,130 people had a diagnosis of autism but not a learning disability, while 6,450 participants had a diagnosis of both autism and a learning disability.
The biggest life expectancy gap was seen between autistic women with a learning disability and the general population, with this group, on average, living until just 69.6 years old. The average life expectancy for women is 83 years old. That’s 13 years less life. For an autistic male with a learning disability death is, on average, eight years earlier than the general population.
The researchers found that autistic men die, on average, five years earlier than non-autistic men, and autistic women die six years younger.
The lead investigator of the study, Professor Josh Stott, said: “Autism itself does not, to our knowledge, directly reduce life expectancy, but we know that autistic people experience health inequalities, meaning that they often don’t get the support and help that they need when they need it.”
A study published in The Lancet Psychiatry, also in November, specifically looked at the help autistic people get from mental healthcare services and found that autistic adults that use NHS mental healthcare services are more likely to experience worse therapy outcomes compared to non-autistic people.
NHS mental healthcare services recommended for anxiety and/or depression are the talking therapies, cognitive behavioural therapy (CBT) and counselling. The study used existing data from large medical records databases to measure participants’ outcomes (depression and anxiety scores) both before and after therapy to see if there was an improvement in symptoms.
They found that autistic people were 25% less likely to see an improvement in symptoms of anxiety and depression compared to non-autistic people. They were also 34% more likely to experience a deterioration in these symptoms.
The study also found that despite experiencing much higher levels of depression and anxiety than the general population, autistic people are largely under-represented in mental healthcare services.
The authors suspect that this is due to the “specific barriers” that autistic people experience to accessing therapy and the lack of appropriate adaption for neurodiversity. This includes differences in thinking style, sensory sensitivities or the need for predictability.
The National Autistic Society (NAS) says this study reflects what they hear all too often: “That autistic adults are not getting the mental health support that they need.”
Anoushka Pattenden, Evidence and Research Manager (Partnerships) at NAS, said: “Action needs to be taken now to make sure health services are just as effective for autistic people.
“It’s vital that mental health professionals receive training in identifying and understanding autism, are flexible in their approach, and include autistic people in discussions about the treatment and adjustments they need.”
Much needed changes and improvements in the way autistic people are treated within the health system received a major setback, however, when the government dropped reform of the Mental Health Act from the King’s Speech at the beginning of November. This was despite knowing the contents of a four-year long enquiry led by Baroness Hollins, condemning the government’s failure to end the “inhumane treatment” of autistic people and people with learning disabilities.
Baroness Hollins wrote:
“My heart breaks that after such a long period of work, the care and outcomes for people with a learning disability and autistic people are still so poor, and the very initiatives which are improving their situations are yet to secure the essential funding required to continue this important work.”
The review was published a day after the King’s speech.
Tim Nicholls, Head of Influencing and Research at the National Autistic Society, said:
“The King’s Speech was a vital opportunity for the Government to commit to reforming the outdated Mental Health Act, and address the ongoing crisis of autistic people being stuck in mental health hospitals. The Government has failed to keep its promises.
“Reforming the Mental Health Act needed to be a key step towards ending this crisis. We urgently need significant, long-term funding for community mental health and social care services, so that autistic people can get the support they need in the first place and don’t need to reach crisis point and end up locked away in hospitals.”
Dear Reader,
If you like our content please support our campaigning journalism to protect health care for all.
Our goal is to inform people, hold our politicians to account and help to build change through evidence based ideas.
Everyone should have access to comprehensive healthcare, but our NHS needs support. You can help us to continue to counter bad policy, battle neglect of the NHS and correct dangerous mis-infomation.
Supporters of the NHS are crucial in sustaining our health service and with your help we will be able to engage more people in securing its future.
Please donate to help support our campaigning NHS research and journalism.
Comments are closed.