The LeDeR report for 2019: a warning from (recent) history for the COVID-19 era

Summary

In this blogpost I look at what the most recent LeDeR report tells us about the deaths of people with learning disabilities before the COVID-19 pandemic, and what we can learn to support people as the pandemic continues.

Here is the list of suggested actions coming out of the blogpost:

We need a much better way of tracking infection rates as well as deaths amongst people with learning disabilities and those supporting them, and universal testing.

Flu vaccinations (for people with learning disabilities and those people supporting them) are crucial, including clear messages throughout health services that people are eligible for free vaccinations, pro-active strategies for making sure people are offered them in ways that people are likely to accept, and support for people to have them. In 2018/19 only 44% of eligible people with learning disabilities in England had a flu jab, virtually the same percentage as in 2017/18.

Annual health checks for people with learning disabilities need to take place urgently, and need to include a specific section on priorities for keeping people safe during the potential second spike. This should include urgent medication reviews. In 2018/19 only 56.1 of eligible people with learning disabilities had an annual check, a slight increase from 55.1% of people in 2017/18 but far short of the 75% target set by NHSEI (and way short of the 100% people that is presumably the ultimate aim?).

NHS to identify and prioritise as a COVID-19 priority those health services that are particularly important to preserve the health of people with learning disabilities through any second spike.

Triaging for intensive care treatment for COVID-19 on the basis of ‘frailty’ should be scrapped.

In advance of a second COVID-19 peak, it should be an urgent priority to go through proper consultation processes with people and those supporting them to reach individual decisions on DNACPRs.

Rigorous medication reviews are urgent.

Supporting the health of people with learning disabilities who are part of BAME groups needs to be a particular priority.

Supporting the health of people with profound and multiple learning disabilities needs to be a particular priority.

People with epilepsy, dysphagia, constipation and GORD need to be considered as being at potentially greater risk, and urgent measures to support people with these conditions is needed.

All these measures should not be targeted at older people with learning disabilities but are equally important for people at all ages.

As many people as possible need to leave inpatient services now, even if for medium-term creative alternatives that put people at a lower risk of COVID-19 infection.

All these measures should be part of a national management and operational plan set up now and operating through the course of the pandemic, with substantial direction from people with learning disabilities and those supporting them (see this example from Australia for people with disability).

What this blogpost is about

In this blogpost I want to talk about the most recent report from the LeDeR programme, a voluntary programme for the notification and review of the deaths of people with learning disabilities. The report has been published in July 2020, but is called the 2019 report because it provides information up to the end of 2019. I have written about previous LeDeR reports here and here, and about the Government response to a LeDeR report two years ago here. To be honest the overall picture has remained depressingly similar over time, although more detailed analysis is added to the reports every year as more information becomes available.

In this post I want to talk about what the information from this report, obviously about a pre-COVID-19 world, can tell us about preventing even more people with learning disabilities dying as the COVID-19 pandemic continues. We already know (largely thanks to LeDeR programme notification data, reluctantly released and skeletally analysed by NHS England/Improvement (NHSEI)) that people with learning disabilities in England have been dying in disproportionately large numbers in the first wave of COVID-19. While this may be abeyance at the time of writing (17^th July 2020), the need to do radically better, urgently, is acute well before winter comes.

Before going into what the LeDeR report shows, it’s important to realise there are three main sources of information used in the report.

1) Notifications. Anyone can notify a death of someone with learning disabilities in England to the LeDeR programme through an online form or ringing the LeDeR team (notifications are what are being reported weekly during the COVID-19 pandemic). The LeDeR programme has taken time to become national in its reach (and it’s important to remember that notifications are not mandatory), so 2019 is probably the first year to produce truly national figures for England. In 2019 notifications of deaths were made for 3,060 people in England, up from notifications of 2,720 people’s deaths in 2018 and notifications of 1,265 people’s deaths in 2017.

2) Reviews. The main purpose of the LeDeR programme is to co-ordinate, stimulate and collate information from reviews of all deaths of people with learning disabilities notified to LeDeR. These reviews are supposed to be done by local teams to embed learning from the reviews into local practice. If there are sufficient concerns identified locally about a person’s death, this can go forward for a full multi-agency review. Across the whole time the LeDeR programme has been operating only 45% of notified deaths have been reviewed. While the proportion of notified deaths being reviewed has increased over time, even in 2019 only just over two-thirds of notified deaths were reviewed (69.5% review rate in 2019, compared to 33.6% in 2018 and 9.1% in 2017), so reviews are still not keeping pace with notified deaths let alone catching up with the backlog.

3) For notified deaths, information on causes of death can be obtained from death certificates via the Office for National Statistics (ONS). The LeDeR programme has obtained these for the deaths of 84% of people since the programme started up to the end of 2019.

How many people are dying during the pandemic compared to before?

Bearing these different sources of information in mind, what can we learn from the LeDeR programme in 2019 to help understand what’s happening to people with learning disabilities during the pandemic? The first thing is that we now have information on how many people died in 2019 against which to compare how many people have died so far in 2020. The graph below sets this out, but it’s quite complicated so I’ll go through it. The columns show how many people’s deaths have been notified to the LeDeR programme so far in 2020. The red parts of the column are people who have been notified to LeDeR as dying of confirmed or suspected COVID-19, the blue parts of the column are people recorded as dying of a non-COVID-19 cause. The biggest column on the left is all deaths from 1^st January 2020 to 20^th March 2020 (around 11 weeks) – after that each column shows the number of people’s deaths each week up to the week ending 10^th July 2020.

The red columns show a sharp rise in the number of people with learning disabilities dying a COVID-19 related death up to a peak in early-mid April (the same time as the peak for people generally in England), and then a reduction to the point that for the past month fewer than 5 people per week have been notified to LeDeR as dying of COVID-19. The blue columns show that, at the same time as the COVID-19 peak, more people were also notified to LeDeR as dying of other causes – this has gradually reduced to around 35 people per week dying non-COVID-19 deaths in the past month.

How does this compare to the number of people with learning disabilities dying in 2019, before COVID-19? The very dark blue line on the graph shows the average number of people dying per week notified to LeDeR in 2019 – this was 3,060 people’s deaths, or 58.9 deaths of people with learning disabilities every week [this is close to the 54 people dying per week from 2016-2019 I shonkily calculated from other statistics in a previous blog, so there is some consistency there]. The LeDeR report shows there is some seasonal variation in how many people’s deaths were notified to them in 2019 (highest October – December) but the variation is not so extreme as to make a big difference to the figures for January – July.  The striking thing about this line for me is how many more people’s deaths were notified to LeDeR in the very early part of 2019 compared to the very early part of 2020 (before COVID-19 really hit the UK). At the peak of the pandemic, the number of non-COVID deaths notified to LeDeR was similar to the average weekly level for 2019 (and dropping to well below these levels by June), with additional COVID-19 deaths during the peak. I don’t know why this is, but it does suggest that before the COVID-19 pandemic really hit many fewer people’s deaths were being notified to the LeDeR programme than in 2019 – perhaps the NHS gearing up for COVID-19 (including the suspension of LeDeR reviews) was partly responsible? This means that the LeDeR figures for 2020 might seriously under-estimate the number of people with learning disabilities dying in 2020.

Finally, as the LeDeR report makes grimly clear, before the COVID-19 pandemic people with learning disabilities (as has been the case for a long time) were twice as likely to die deaths that were avoidable than the general population, with approaching half of people with learning disabilities (44% vs 22% for the general population) dying an avoidable death (avoidable deaths are the total of deaths that were preventable, treatable, or both). The final, dark green line on the graph shows how many people with learning disabilities in 2019 would have died if the level of avoidable deaths was the same as for the general population (using age-standardised mortality rates). Even before the pandemic, LeDeR reports that 19% of people with learning disabilities compared to 14% of the general population died in ways that were preventable (where better public health or ways to stop people becoming unhealthy in the first place, such as preventing obesity or smoking, would have prevented the person's death). Particularly grim was the finding that one-third of people with learning disabilities (34%) died in ways that were treatable (timely and effective healthcare, or effective interventions to reverse ill-health, would have prevented the person's death) compared to 8% of the general population.

Throughout the first wave of COVID-19, this already poor treatment on the part of health services is likely to have got worse for many people with learning disabilities, as intensive care services were prioritised partly by the withdrawal or reduction of health services of particular relevance to people with learning disabilities. This is likely to be placing people at greater risk of having a severe reaction to COVID-19. This includes postural care and wheelchair support services, annual health checks and a range of primary care services, and speech and language therapy (in this context, particularly important for people with dysphagia). In any preparation for a future COVID-19 spike, it is crucial now to identify and include as a COVID-19 priority those health services that are particularly helpful (in both the short and long term) in helping people with learning disabilities reduce their COVID-19 risk.

Who is dying?

One of my extreme frustrations throughout the COVID-19 pandemic has been the lack of published analysis of what puts people with learning disabilities at greater risk of dying from COVID-19, despite relevant information being present in the datasets being used. Public Health England are apparently due to publish a much more complete analysis of the figures relating to people with learning disabilities during COVID-19 by the end of July 2020.

The LeDeR report gives us a picture from before COVID-19 (2017-2019) of who amongst people with learning disabilities was at greater risk of dying.

Most obviously, on average people with learning disabilities died at much younger ages than the general population. The median age at death (the age at which half the group have died younger and half the group have died older) was 61 years for boys/men with learning disabilities in 2019 (vs 83 years in the general population), and 59 years for girls/women with learning disabilities (vs 86 years in the general population). The graph below shows the percentage of people with learning disabilities vs the general population who died by the age at which they died. As the graph shows, 85% of the general population die at the age of 65 years or older, compared to 37% of people with learning disabilities.

COVID-19 analysis so far has shown that older age is the biggest risk factor for dying from COVID-19; within the broad older age category, increasing age means increasing risk. Data from adults with learning disabilities and/or autistic people in particular types of registered social care, produced by the Care Quality Commission, reported that 47% of people who died between 10 April and 15 May 2019 were aged 65 years or older, compared to 44% of people who died of non-COVID causes in the same time period in 2020 and 45% of people who died of COVID-19 in the same time period in 2020 (the timeframe starts in the middle of the first COVID-19 peak). This suggests that, amongst people with learning disabilities, COVID-19 does not seem to be disproportionately affecting older people compared to other causes. This could be for any number of reasons:

1) fewer people with learning disabilities survive into older age, with those that do survive possibly healthier than people who die at younger ages (I would recommend this great report from the Greater Manchester Growing Older with Learning Disabilities project, published yesterday, to understand more about what older people with learning disabilities think about their lives).

2) people with learning disabilities are more likely to experience multiple health conditions that may put people at risk of a severe reaction to COVID-19 at a younger age than the general population.

In the general population, being part of a Black or Minority Ethnic (BAME) group has been associated with a higher risk of death from COVID-19. The LeDeR report shows that, even before the pandemic, people with learning disabilities from BAME communities (and particularly those people with profound and multiple learning disabilities) were more likely to die at much younger ages than White British people with mild/moderate learning disabilities. These inequalities pre-COVID are illustrated in the LeDeR by looking at median age of death. If you are a person with mild/moderate learning disabilities (to sue the report’s terminology), if you are White British your median age at death is 64 years compared to 54 years if you are part of a BAME group. If you are a person with severe or profound and multiple learning disabilities, if you are White British your median age at death is 57 years compared to only 31 years if you are part of a BAME group.

Given how COVID-19 has disproportionately affected people in BAME communities generally, it is possibly that COVID-19 might be worsening these already existing inequalities in the deaths of people with learning disabilities.

It is also clear that support for people with profound and multiple learning disabilities should be particularly important during any second COVID-19 spike.

Where do people die?

Again, there is an absence of information about where people with learning disabilities are dying during the COVID-19 pandemic, and where people were living before they died.

The LeDeR report states that, of those people’s deaths reviewed in 2019, 60% of people with learning disabilities died in hospital (compared to 46% of the general population. We don’t know how many people with learning disabilities who died of COVID-19 died in hospital compared to other places. A simplistic comparison of the number of confirmed COVID-19 deaths of people with learning disabilities and/or autistic people in hospital reported by NHS England (516 people to date) vs the number of COVID-19 deaths of people with learning disabilities in any location reported by the LeDeR programme in 2020 (640 people to date) would suggest that 81% of people with learning disabilities dying of COVID-19 died in hospital. This might be another reason to suspect under-reporting of deaths to the LeDeR programme in 2020 compared to 2019.

One specific issue is about people with learning disabilities and autistic people dying in inpatient units throughout the COVID-19 pandemic. The LeDeR report states that 9 people either in inpatient units or discharged from one less than 2 months previously had died in 2019 – the latest figures from the MHSDS report that 10 people with learning disabilities and/or autistic people had died in inpatient units in one month (April 2020, the peak of the pandemic).

Do not resuscitate orders (DNACPRs)

Leading up to and throughout the pandemic, the alarm has been raised about blanket DNACPRs being issues to people with learning disabilities, and people with learning disabilities having DNACPRs put on their medical notes during a hospital visit without due consultation and consideration. Even before the pandemic, the LeDeR report found that 16% of people with learning disabilities who had died in 2019 and had their death reviewed had a DNACPR decision that had not been appropriately completed with proper procedures followed.

What health conditions do people die of?

As a population, people with learning disabilities at younger ages are more likely than the general population to have a wide range of health conditions associated in the general population with a higher risk of a severe reaction to COVID-19, such as: chronic obstructive pulmonary disease, high blood pressure, chronic heart disease, heart failure, stroke, Type 1 and Type 2 diabetes and chronic kidney disease. People with learning disabilities are also more likely to be extremely overweight starting at younger ages than the general population. I went through the evidence in some detail in this blogpost in March so I won’t repeat it here.

What I want to highlight in this blogpost is what the LeDeR report shows about long-term health conditions commonly experienced by people with learning disabilities but not generally mentioned as risk factors for a severe reaction to COVID-19 in the general population, perhaps because some of them are relatively rare in the general population. In particular, pre-COVID-19 the LeDeR report found that, amongst those who had died, 36% of people had experienced epilepsy, 29% of people had experienced dysphagia, and 23% of people had experienced constipation. These three health conditions (along with Gastro-Intestinal Reflux Disorder, or GORD) are all likely to place people at greater risk of a severe reaction to COVID-19 and need particular attention.

Prescribed drugs

The LeDeR report pre-COVID-19 reports how common prescribed drugs were, and how many different drugs people were prescribed, amongst people whose deaths had been reviewed in 2019. Pretty much everyone who had died (97% of people) had been prescribed at least one drug, with 61% of people prescribed 5 or more different drugs (a common definition of ‘polypharmacy’), which is higher than the level of polypharmacy reported in research studies. For 12% of people, their combination of drugs could lead to potentially ‘severe’ drug-drug interactions affecting health and life, and for a further 14% of people their combination of drugs could lead to potentially ‘moderate’ drug-drug interactions causing pain and discomfort.

The most commonly prescribed drugs relate to health conditions relevant to COVID-19, as I’ve mentioned above.

Over 4 out of 10 people (42%) had been prescribed proton pump inhibitors, presumably for acid reflux. A third of people (33%) had been prescribed laxatives, even though they are not particularly effective. A fifth of people (20%) had been prescribed hypertensives and treatments for heart failure, and a fifth of people (20%) had been prescribed lipid regulating drugs.

Many people were prescribed ‘psychotropic’ drugs, affecting the brain, mood or behaviour. Over a third of people (37%) had been prescribed anti-epileptics, over a quarter of people (27%) had been prescribed anti-depressants and just under a quarter of people (23%) had been prescribed anti-psychotics.

Overall, this paints a really bleak picture for me. For some health conditions (like high blood pressure) it looks like many people with a health condition are not being prescribed drugs which could help. More commonly, it looks like people are being prescribed unnecessary drugs that are ineffective (like laxatives), have serious side effects (like antipsychotics), and would not be prescribed if people were supporting to live fulfilling lives. In a COVID-19 context, these drugs, individually and in combination, may be acting to increase the chances of a severe reaction to COVID-19. Medication reviews are needed urgently. And ideas for keeping people ‘safe’ should no be at the expense of supporting people to lead fulfilling lives, which is likely to be more protective than a whole heap of the medications people are currently prescribed.

What to do?

Looking at the LeDeR report for 2019 against what we know about COVID-19 so far, there are some obvious things that health services should be doing NOW to get better prepared for a second COVID-19 spike.

We need a much better way of tracking infection rates as well as deaths amongst people with learning disabilities and those supporting them, and universal testing.

Flu vaccinations (for people with learning disabilities and those people supporting them) are crucial, including clear messages throughout health services that people are eligible for free vaccinations, pro-active strategies for making sure people are offered them in ways that people are likely to accept, and support for people to have them. In 2018/19 only 44% of eligible people with learning disabilities in England had a flu jab, virtually the same percentage as in 2017/18.

Annual health checks for people with learning disabilities need to take place urgently, and need to include a specific section on priorities for keeping people safe during the potential second spike. This should include urgent medication reviews. In 2018/19 only 56.1 of eligible people with learning disabilities had an annual check, a slight increase from 55.1% of people in 2017/18 but far short of the 75% target set by NHSEI (and way short of the 100% people that is presumably the ultimate aim?).

NHS to identify and prioritise as a COVID-19 priority those health services that are particularly important to preserve the health of people with learning disabilities through any second spike.

Triaging for intensive care treatment for COVID-19 on the basis of ‘frailty’ should be scrapped.

In advance of a second COVID-19 spike, it should be an urgent priority to go through proper consultation processes with people and those supporting them to reach individual decisions on DNACPRs.

Rigorous medication reviews are urgent.

Supporting the health of people with learning disabilities who are part of BAME groups needs to be a particular priority.

Supporting the health of people with profound and multiple learning disabilities needs to be a particular priority.

People with epilepsy, dysphagia, constipation and GORD need to be considered as being at potentially greater risk, and urgent measures to support people with these conditions is needed.

All these measures should not be targeted at older people with learning disabilities but are equally important for people at all ages.

As many people as possible need to leave inpatient services now, even if for medium-term creative alternatives that put people at a lower risk of COVID-19 infection.

All these measures should be part of a national management and operational plan set up now and operating through the course of the pandemic, with substantial direction from people with learning disabilities and those supporting them (see this example from Australia for people with disability).