This blogpost picks out some findings from the latest LeDeR report, which reviews the deaths of people with learning disabilities in England notified to the LeDeR programme. There are multiple formats for this report, including easy read and infographics as well as the full report. Reporting deaths to the LeDeR programme is national in scope but voluntary, with local reviewers often conducting reviews as part of or in addition to their jobs. The organisations managing and reporting on this programme changed in the middle of 2021, and the programme has continued through the ongoing COVID-19 pandemic, with its operation disrupted by the ongoing pressure on health services through the ongoing COVID-19 pandemic.
(source: Wellcome Trust)
The latest LeDeR report, published in July 2022, focuses on the calendar year 2021, with comparisons where possible to 2018, 2019 and 2020, and some comparisons to equivalent information about the general population. When looking at all this information, it's vital to bear in mind the big peaks of COVID-19 (so far), largely before the widespread availability of the COVID-19 vaccination, which hit in the spring of 2020 and the end of 2020/beginning of 2021 and resulted in disproportionately high numbers of deaths among people with learning disabilities.
There are three levels of information collected by the LeDeR programme. First, there are web-based open systems for notifying deaths of people with learning disabilities to the LeDeR programme (the new organisations taking this on have started collecting information about the deaths of autistic people as well, although findings from this won't be reported in the next annual report), with some basic information collected as part of this notification process. In 2021, 3,304 deaths of people with learning disabilities were reported to the LeDeR programme, compared to 3,652 deaths in 2020, 2,825 deaths in 2019, and 2,613 deaths in 2018. There is a clear COVID-19 effect here, and the report shows that COVID-19 has caused the death of additional people on top of people dying from other causes.
The second level of information is collected from initial reviews, collected by local reviewers. There have been some changes to the information collected in this initial review from the old to the new LeDeR regime, so some information for 2021 is unavailable or cannot really be compared to 2020. These reviews are supposed to happen for every death, and in the past there have been serious backlogs in these reviews being done. For the 3,304 people whose deaths had been notified to the LeDeR programme in 2021, 2,662 initial reviews (80.6%) had been completed by the time of writing the report in 2022.
The third level of information is collected from additional focussed reviews where there are thought to be potential concerns based on the initial review. Again, there have been some changes to how these are conducted, and for 2021 in total 139 focused reviews had been completed (5.2% of those who whom an initial review had been completed).
In addition, information collected for the LeDeR programme can be linked to information from death certificates on cause of death. Death certificates in themselves can be records of discriminatory health service practices (for example, the recording of 'learning disability' as a cause of death).
Taken together, this means that quite a lot of information can be missing for quite a lot of people, which is important to bear in mind when going through the report's findings.
Overall, in 2021, the median age of death (if you order people's deaths from youngest to oldest, the median is the age at which half of people have died) was 61 for boys/men and 60 for girls/women (the LeDeR programme covers people's deaths from the ages of 4 upwards). For comparison, immediately pre-COVID-19 LeDeR reported the median ages of death for people with learning disabilities as 60 for both boys/men and girls/women. These are similar ages of death for people with learning disabilities to those reported using a range of methods for a decade, showing no clear trend of absolute improvements in life expectancy for people with learning disabilities over this timescale. There is also no sign of the gap in life expectancy between people with learning disabilities and other people closing, even as life expectancy for the general population in England is stalling and if anything starting to decrease. According to the LeDeR programme, in 2019, 2020 and 2021 over 60% of people with learning disabilities in each year died before the age of 65. Comparative figures for the general population in 2020 (so including the COVID-19 pandemic) reported 15% of people died before the age of 65.
During the COVID-19 pandemic, there has been a lot of focus on health conditions that might be considered risk factors if a person is infected with COVID-19, with the creation of the 'Clinically Vulnerable' and 'Clinically Extremely Vulnerable' categories which are used to prioritise COVID-19 vaccinations but now confer no additional support or consideration from education, health or social care services. There were real struggles to prioritise all people with learning disabilities (or at least those registered as such with their GP) for the COVID-19 vaccination, as many people with learning disabilities had potentially risky health conditions not recognised in the list of conditions drawn up algorithmically for the general population. The lack of clarity of guidance for (fourth) booster COVID-19 vaccines continues this injustice.
Findings from the LeDeR programme reinforce how risk algorithms drawn up on the general population miss out health conditions and issues that are common for people with learning disabilities. Amongst people with learning disabilities who had died from any cause, the most common long-term health conditions were: epilepsy (33% of people who had died); cardio-vascular (heart) diseases (32%); mental health problems (32%); sensory impairments (25%); and dysphagia (23%). Many of these health conditions (particularly issues like dysphagia) are unlikely to be on the radar of general health services, especially as they often go unrecognised even in people with learning disabilities. For example, GPs recorded dysphagia amongst 4.3% of people with learning disabilities in 2016/17, rising to 7.8% of people in 2020/21, reflecting (welcome) increasing recognition, but from a very low base.
The LeDeR report continues to report entrenched discrimination in the way that health services manage the deaths of people with learning disabilities. Some of these practices have got even worse during the COVID-19 pandemic, but they also pre-date the pandemic, so cannot be brushed aside as the product of a health service under intense pandemic pressure. In 2021, 64% of people with learning disabilities who died had a Do Not Attempt Resuscitation (DNAR) order (for a further 12% of people it was not recorded whether a person had a DNAR or not). This is very similar to percentages recorded in 2018 (63%), 2019 (63%) and 2020 (64%). A DNAR may be entirely appropriate for a person, depending on whether due legal process has been gone through. LeDeR reviewers in 2021 (who, as we shall see, are generally quite optimistic in their evaluation of the care people had experienced) reported that 40% of the DNAR documentation and processes they reviewed were not appropriate.
What has definitely got worse is the percentage of people's deaths that have been reported to a coroner. For children with learning disabilities aged 4-17, the LeDeR programme reports that the percentage of children's deaths reported to the coroner has plummeted over time, from 42.5% in 2018, through 50.9% in 2019 and 38.0% in 2020, to 14.7% in 2021. For adults with learning disabilities the percentage of people's deaths reported to the coroner started low and continues to fall: from 24.9% in 2018, through 18.6% in 2019 and 15.3% in 2020, to just 8.7% in 2021. For comparison, in 2020 34% of all registered deaths in the UK were reported to a coroner. Despite the severe limitations of inquests when trying to gain truth and accountability for people with learning disabilities who have died (see the excellent work of Inquest, George Julian, and the Stop People Dying Too Young group), not even getting as far a coroner is an obvious brick wall to accountability before the process even starts.
In 2021, what did people with learning disabilities die of, according to death certificates? The five most common causes of death (using quite broad standard categories, so apologies for some of the offensive jargon here) reported by the LeDeR programme were:
1) COVID-19 (532 people were reported to have died of COVID-19, or 21.3% of all deaths in 2021)
2) Diseases of the circulatory system (356 people; 14.3%)
3) Diseases of the respiratory system (300 people; 12.0%)
4) Cancers (286 people; 11.4%)
5) Diseases of the nervous system (276 people; 11.0%)
With the exception of COVID-19 in 2020 and 2021, these are fairly similar to the causes of death reported in previous LeDeR reports for 2018, 2019 and 2020.
More detailed analyses of specific causes of death in the LeDeR report further show the ways in which standard health programmes stack the deck against people with learning disabilities. One example is bowel cancer, which from 2018 to 2021 represented between 10.9% and 14.7% of all cancer deaths of people with learning disabilities, with people with learning disabilities dying from bowel cancer at an average age of 61.7 years. Yet bowel cancer screening only starts at the age of 60 (up to 74), so it is guaranteed to not pick up early signs of bowel cancer amongst many people with learning disabilities. The promising news is that the bowel cancer screening programme over the next five years is dropping its minimum age to 50 from 60, which will include many more people with learning disabilities. The bad news is that other data from GPs shows that only 43.3% of people with learning disabilities eligible for a bowel cancer screening test actually had one in 2020/21, compared to 62.7% of people without learning disabilities, so extending theoretical eligibility will have limited impact in the absence of practical, proactive measures to increase screening coverage.
Overall, it's not surprising (although I hope it is still shocking) that LeDeR reports 49% of people with learning disabilities died an avoidable death (based on a standard list of causes of death that have been judged to be preventable and treatable) in 2021. This compares to 22% of the general population dying an avoidable death, using the same definition, in 2020. This yawning chasm has been apparent through all the LeDeR reports and in those preceding them.
In this LeDeR report (as in previous ones) I've found it very hard to reconcile the scale of grimness in the findings I've reported above with the more rosy take of LeDeR reviewers, who are asked to rate various aspects of the person's healthcare and support. As mentioned there have been some changes in how this information is collected from reviewers, so it's hard to present a consistent picture over this transition year. The information is also only shown in the report as graphs, so any percentages reported are my guesses based on squinting at the columns.Only looking at reviewer ratings based on the initial Bristol method (these are collected in initial reviews, and have much higher numbers of reviews than those using the new method), in both 2020 and 2021, care falling short of expected good practice (ratings 1 to 3) was reported in less than 20% of reviews, 'satisfactory care' (rating 4) was reported in around 25% of reviews, and 'good' or 'excellent' care was reported in almost 60% of reviews. Even for people whose death was avoidable according to the definition above, for 47% of people reviewers rated their care as good or excellent. In both 2020 and 2021 reviewers rated over 90% of people's care packages as meeting the person's needs. Reviewers also expressed concerns about people's deaths relatively rarely; 9.9% of people's deaths in 2020 and 7.3% of people's deaths in 2021.
As in previous years, this LeDeR report makes for very grim reading. Discrimination in health service provision was patently obvious to those who cared to look even before the COVID-19 pandemic, and from this and other sources of information it's clear that the way that people with learning disabilities have been un/mis/treated through the pandemic has only exacerbated this discrimination. The multiple initiatives (including the LeDeR programme itself, which has a substantial local service improvement dimension) happening in various pockets of health services is clearly not moving the dial for the population of people with learning disabilities in a way that is noticeable at a national scale.
But then through a lens of socio-economic inequality (with a side order of disablist discrimination) this is hardly surprising. The LeDeR report largely doesn't (and possibly can't) address this in any detail, although there are hints that people with learning disabilities from minoritised ethnic communities are more likely to die, and die younger, compared to other people with learning disabilities. People with learning disabilities who lived in more deprived areas are also much more likely to die than people with learning disabilities who lived in wealthier areas, although we don't know this information about where people with learning disabilities are generally living. Where are the concerted initiatives that, over time, would make a massive difference to the population health of people with learning disabilities, starting from birth - stopping poverty, better education, decent quality housing throughout people's lives (with or without support from staff), employment for those who want it, support for families so that everyone can live their best life, being able to go out without fear of abuse or crime, and things set up so that people can imagine their future and go and live it? In a total vacuum of national policy or attention across government, health services have tried to fill the void, but when you've only got a health service hammer everything looks like a nail (and don't give me the ICS spiel - everything I've heard looks like they're replicating the cultures and practices of any number of acronymic health planning quangoids that came before them).
Bleak times.
