Social care statistics and adults with learning disabilities in England - 2019/20 update

NHS Digital have recently released their annual tranche of statistics concerning social care for adults in England, and this blogpost updates previous posts about social care for adults with learning disabilities to include information for 2019/20. Because the reporting year for these statistics runs from April to March, we will not really be able to see what effect COVID-19, and social care responses to COVID-19, will have had on these social care statistics until information for 2020/21 is published, probably around this time next year.

Councils with social services responsibilities return information to NHS Digital every year on how many adults are using various forms of social care, and how much councils spend on social care (this doesn’t include other types of state funding relevant to social care, such as housing benefit as part of supported living support). When looking at trends over time it’s important to remember that there were big changes in the way information was collected between 2013/14 and 2014/15, the one with the biggest impact being that up to 2013/14 most information was collected on people known to social services whereas from 2014/15 onwards most information is collected only on people getting ‘long-term’ social care. Most of the information for 2019/20 can be found here and here (although for many of the graphs here I have had to dig into the depths of CSV files).

First, how many adults with learning disabilities are getting access to social care? From 2014/15 the types of long-term social care support people get have been grouped into one of six mutually exclusive categories: residential care, nursing care, direct payment only, support via a personal budget partly including a direct payment, a council-managed personal budget, and council-commissioned community support only. For most of these categories there is also equivalent information from 2009/10.

The first graph below shows the number of adults with learning disabilities aged 18-64 getting various types of personal budget or council-commissioned community support from 2009/10 to 2019/20 (bearing in mind the change in data collection between 2013/14 and 2014/15), and also the number of adults aged 18-64 in residential or nursing care.

This graph shows that trends evident from 2009/10 to 2018/19 have largely continued through to 2019/20. Adults with learning disabilities aged 18-64 were most commonly getting support in the form of council-managed personal budgets (the extent to which most of these feel any different to council-commissioned services is debatable). The number of people getting support in the form of direct payment only or with part-direct payment has been consistently rising over time, and is now the second most common vehicle for long-term social care support, although the number of people getting a direct payment only seems to be stalling. The number of people getting council-commissioned community support only continues to decrease.

In terms of residential and nursing care, the graph shows that although the number of adults aged 18-64 in residential care and nursing care continues to gradually decline over time, in 2019/20 they still represented 18% of all adults with learning disabilities aged 18-64 getting long-term social care.

In total 135,430 adults with learning disabilities aged 18-64 were getting long-term social care in 2019/20, an increase of 9% in the five years from 2014/15.

The second graph below presents the same information for adults with learning disabilities aged 65+, from 2014/15 (when the information first became available). Please note that, because the number of people with learning disabilities aged 65+ using social care is much smaller compared to people aged 18-64, I have used a different vertical scale.

Again, council-managed personal budgets are the most common form of community-based support for older adults. These, along with other forms of personal budget, are continuing to increase over time while the number of adults getting council-commissioned community services only continues to decrease. The number of older adults with learning disabilities in both residential care and nursing care fluctuates over time, representing in 2019/20 38% of all older adults with learning disabilities getting long-term social care.

In total 17,715 adults with learning disabilities aged 65 or over were getting long-term social care in 2019/20, an increase of 22% in the five years from 2014/15.

It’s also highly likely that these figures under-represent the number of people with learning disabilities in residential and nursing care. From 2014-15 everyone using social care is allocated to a single category of ‘primary need’ – learning disabilities is one of these categories, but it is also possible that a person with learning disabilities may be allocated to a different ‘primary need’ such as physical support, sensory support, mental health support, or support with memory and cognition (e.g. dementia). We don’t know the extent to which people with learning disabilities, particularly as they get older, are re-assigned to a different category and potentially moved into generic residential or nursing care places for older people.

The temptation for cash-strapped commissioners to do this is strong as residential and nursing care for people with learning disabilities are a lot more expensive than residential and nursing care for other groups, and residential and nursing care for people aged 18-64 are much more expensive than residential and nursing care for people aged 65+. The graph below shows the unit costs for residential and nursing care for adults with learning disabilities aged 18-64 (from 2009/10) and for older adults (from 2014/15). It is really important to remember that these costs (which should more properly be termed fees) are not adjusted for inflation.

In 2019/20 the average fee of residential care for adults with learning disabilities aged 18-64 was £1,583 per week (the next most expensive average fee was for people with sensory needs, at £1,181 per week). Nursing care for adults with learning disabilities aged 18-64 was charged at an average £1,2716 per week (the next most expensive average fee was for people needing support with memory and cognition, at £964 per week).  

Residential care for adults with learning disabilities aged 65+ was an average £1,063 per week (the next most expensive average fee was for people with sensory needs, at £675 per week). Finally, nursing care for older adults with learning disabilities was an average £881 per week (the next most expensive average fee was for people needing support with memory and cognition, at £730 per week). 

While residential care fees have steadily risen in recent years, nursing care fees have on average risen but also fluctuated over time.

It is also extremely likely that more adults with learning disabilities could do with social care support than are currently getting it. Although there are no longer any national statistics that directly address this issue, there are a couple of ways to think about it.

First, the information I’ve quoted so far shows that even in the last five years the number of adults with learning disabilities getting social care support has continued to increase. However, the increases we see are nowhere enough to keep up with the likely increase in the number of adults with learning disabilities needing social care support according to population projections. In 2012, a team led by Eric Emerson produced some projections of the number of adults with learning disabilities likely to need social care support up to 2030. Even under the most restrictive funding scenario (with only people with critical or substantial needs getting social care support) we estimated that by 2020 there would be 172,802 adults with learning disabilities needing social care support, compared to the 153,145 adults actually getting long-term social care support in 2019/20.

Second, although it is limited, adult social care statistics also include information on new people coming to the attention of social care services, and what happens to them after a ‘completed episode of short-term care to maximise independence’ (which to my untutored eye looks functionally equivalent to assessment). The graph below shows this information for all adults with learning disabilities aged 18+, from 2014/15 to 2019/20. Looking at the graph, 2018/19 looks like a bit of an anomaly, largely due to much higher numbers of people being signposted to universal services of other forms of non-social care support than in any other year. Without the 2018/19 data, there seems to be a more gradual upward trend in the number of adults with learning disabilities coming to the attention of social services.

In terms of what was happening in 2019/20, 1,190 adults with learning disabilities (almost all of whom were aged 18-64) came to social services as new clients. Of these, 33% (395 people) were identified as having no needs and therefore requiring no services, and very few (10 people) were identified as self-funders. For 22% (265 people) the response from social services was to signpost people to universal services or other forms of non-social care support. Relatively few people (120 people; 10%) went on to get some form of low level or short-term support from social care, with slightly more people (195 people; 16%) going on to get some form of long-term social care support. Few people  (50 people; 4%) declined a service that was offered.

In terms of the living situations of adults with learning disabilities, from 2009/10 councils have provided a detailed breakdown on where they think adults with learning disabilities aged 18-64 are living. The differences between information up to 2013/14 (on everyone known to councils) and information from 2014/15 (on people getting long-term social care support) are pretty stark here, as most numbers are considerably lower in 2014/15 compared to 2013/14. The graph below is very complicated as there are a lot of categories, but there are a couple of things that stand out for me.

First, by far the most common living situation for adults with learning disabilities aged 18-64 is ‘settled mainstream housing with family/friends’ – (in practice for almost everyone living with family). In 2019/20 this applied to 49,070 people, 36% of all working age adults with learning disabilities getting long-term social care, with numbers rising (up 10% in the five years from 2014/15). The number of working age adults in some form of supported accommodation, according to these figures, has been rising rapidly - in 2019/20 this was 31,160 people (23% of working age adults getting long-term social care support). The number of people in residential care has continued to decline – in 2019/20 this was 20,095 people (15%), while the relatively small number of working age adults with learning disabilities in nursing homes remains fairly static at 970 people (1%). The number of people in some other types of support, such as tenancies and shared lives arrangements, has fluctuated from 2014/15 to 2019/20 with few consistent upward or downward trends over time.

In 2017/18 I reported a small but rapidly rising number of working age adults with learning disabilities in various types of obviously temporary accommodation (short-term stay with family/friends, council-provided temporary accommodation and other temporary accommodation), rising by 32% in three years from 1,205 people in 2014/15 to 1,590 people in 2017/18. In 2018/19 this had reduced again to 1,195 people but in 2019/20 this had increased again to 1,425 people – I don't know what this substantial fluctuation is about. And the figures reported by social services don’t include most adults with learning disabilities in inpatient services - councils only recorded 370 people in these places in 2019/20, with their reported numbers continuing to drop over time. This number is far fewer than the 2,000 - 3,500  people in NHS Digital statistics recorded by health commissioners or providers – whilst most of the people with learning disabilities in inpatient services will not be directly funded by social care these figures do cast considerable doubt on the reality of policy aspirations to pooled funding and the readiness and willingness of social care services to support people to come out of these places.

Finally, it is important to note that for 6,770 working age adults with learning disabilities getting long-term social support their living situation was unknown to the local authority providing the support – this number had been decreasing but has increased substantially from 2017/18 to 2019/20.

  

How much money are councils spending on social care services for adults with learning disabilities? The graph shows this gross expenditure from 2014/15 to 2019/20, broken down by age band and categories of spending, although it is important to remember that these figures do not include housing benefit (an essential component of supported living arrangements). These figures are also not adjusted for inflation, although the squeeze on social care spending has meant that social care inflation has been relatively low in recent years.

A couple of observations. Overall, the amount of social care funding for adults with learning disabilities continues to increase in absolute terms, from £5 billion in 2014/15 to £6.1 billion in 2019/20, although a relatively small inflation rate would pretty much wipe this increase out. Second, almost the entire social care budget (98.8%) is spent on long-term support rather than short-term support. Finally, social care spending on residential and nursing care for adults with learning disabilities still represents 34.1% of all social care expenditure on adults with learning disabilities.

The final thing I want to repeat from last year's blogpost is the point that Neil Crowther has made in his recent synthesis review of evidence on deinstitutionalisation throughout Europe – that the statistics I’ve talked about here mainly report on the number of people using, and spending on, specialised services of various kinds. There is much less information about how people experience their lives, and whether people have the opportunity to exercise their rights and live their lives how they want. The final graph below is from the other set of social care statistics released yesterday, the Adult Social Care Survey. This is a major exercise conducted via local authorities every year to survey thousands of adults using long-term social care to gain exactly the kind of information that Neil discusses. The graph below shows the percentage of adults with learning disabilities getting long-term social care in the survey (at least 16,000 people) reporting on their quality of life, how satisfied they were with the services they were getting, how good their health was generally, and about if they felt anxious or depressed on the day. The graph also has comparative information from adults with physical support needs and adults with mental health needs who responded to the survey.

The survey is very carefully designed and conducted, including an easy-read version available to anyone who wants it. I think this graph shows that there are unavoidable limitations to conducting a survey in this way to get this kind of information. First, people with learning disabilities report everything as being much better (this is true across pretty much all the questions in the survey) than other people, which I can’t help thinking is because far more people with learning disabilities get help to complete the survey than other groups. For example, 45% of people with learning disabilities completing the survey had help from a care worker, compared to 16% of people with physical support needs and 34% of people with mental health support needs. Second, for the most part levels of satisfaction etc are pretty high and are not changing much over time. There is a long strand of research suggesting that people adapt to their circumstances, even if their circumstances don’t look great to an outsider, and I am worried that using high levels of satisfaction as the most important indicator of ‘success’ will hide poor (or absent) support and the constrained lives that many people may be living.

To summarise, the social care statistics presented here suggest that existing trends continued into 2019/20 - more adults with learning disabilities getting long-term social care support (with accompanying small increases in expenditure over time), but not enough to keep up with the numbers of adults with learning disabilities likely to benefit from social care support. More adults with learning disabilities are getting social care in some form of personal budget, with more people living in supported accommodation, continuing to live with their families, and living in some form of temporary accommodation. While the numbers of adults with learning disabilities living in residential or nursing care continue to gradually decline, spending on residential and nursing care is still over a third of the total social care budget for this group of people.

Going through these statistics while continuing to go through the COVID-19 pandemic, I'm wondering how responsive these statistics will be to the massive changes in social care support people with learning disabilities have experienced during the pandemic, and how relevant and fit for purpose these statistics are to the things that really matter to people. including how social care can be part of the infrastructure everyone needs to lead a fulfilling life. The adult social care statistics currently being collected are undergoing a review, which is apparently due to report fairly soon. I will be really interested to see what is recommended.

COVID-19 and non-COVID deaths among people with learning disabilities in England - what happened through 2020?

 As we come to the end of a grim 2020, this short blogpost will go through weekly statistics on the deaths of people with learning disabilities in England from COVID-19 and non-COVID causes through 2020. I have been putting updates on this information in tweet threads but I haven't put them into a blogpost for quite a while. 

There are two sources of weekly information about COVID-19 deaths amongst people with learning disabilities. The first is the LeDeR programme, originally set up to facilitate local reviews of the deaths of people with learning disabilities in England. It is national in scope but notifications of deaths to the programme are not mandatory. On its notification form, the LeDeR programme started asking about COVID-19 deaths on 16th March 2020, relatively early on in the pandemic. NHS England/Improvement have been publishing weekly information on suspected or confirmed COVID-19 deaths and deaths from non-COVID-19 causes from the LeDeR programme for some time, including a weekly easy read summary.

The first graph below shows the number of people with learning disabilities who died from COVID-19 each week throughout 2020 (the first column on the left is all COVID-19 deaths from when the LeDeR programme started recording COVID-19 deaths up to 20th March). It is important to note that all numbers made public are rounded to the nearest 5, and that if there are fewer than 5 deaths in a week the number is suppressed (standard practice to prevent potential identification of people). 

This graph shows that the number of people with learning disabilities who died from COVID-19 rose very rapidly during the first peak of the pandemic in England and reduced to virtually zero by the end of June. Through the summer very few COVID-19 deaths of people with learning disabilities were reported, but from October to the end of the year the number of people with learning disabilities dying from COVID-19 has increased again but to nothing like the levels in the first peak.

Overall, the LeDeR programme has reported that 840 people with learning disabilities in England have died from COVID-19 up to the 11th December 2020. A Public Health England analysis of this information through the first peak of the pandemic estimated that 65% of deaths of people with learning disabilities were notified to the LeDeR programme - using this estimate would suggest that almost 1,300 people with learning disabilities in England have died from COVID-19.

The second graph below adds in people with learning disabilities dying from non-COVID causes throughout 2020 (the blue columns). The first blue column on the left is so large because it includes all non-COVID deaths from the start of 2020 up to 20th March - after this the blue columns are weekly deaths from non-COVID causes. It is worth noting that the figures for very recent weeks tend to under-report deaths from either COVID-19 or non-COVID causes as notifications of deaths can come in some time after the person has died - the LeDeR programme updates these numbers as notifications come in. 

This graph shows that weekly deaths from non-COVID causes fluctuate from week to week, but don't seem to be particularly high or low at times when COVID-19 deaths are high or low. In total, the LeDeR programme has reported that 2,095 people with learning disabilities have died from non-COVID causes in 2020 up to 11th December. Assuming the same level of under-notification deaths I mentioned earlier, the estimate would be that over 3,200 people with learning disabilities dies from non-COVID causes in 2020 up to 11th December.

Have more people with learning disabilities in England died from COVID-19 and non-COVID causes combined compared to previous years? This is hard to know as good information from previous years isn't available on the number of deaths of people with learning disabilities. As a crude indicator, I have taken the average number of deaths per week reported to the LeDeR programme in 2019 and added this to the graph below as a green line.

In the first part of the year, pre-COVID, many fewer deaths of people with learning disabilities were notified to the LeDeR programme compared to the average for that number of weeks in 2019. I don't know why this is - the LeDeR programme reports some fluctuations throughout 2019 as you would expect, but not to this extent.

Beyond this, during the first peak of the pandemic three times as many people with learning disabilities were dying from COVID-19 and non-COVID causes combined compared to 2019. Once the first peak died down the number of people with learning disabilities dying from COVID-19 and non-COVID causes has been roughly similar to average levels of deaths in 2019.

A second, less comprehensive, source of information is on people who have died from confirmed COVID-19 in hospitals on a weekly basis through 2020. This information, also published by NHS England/Improvement, started flagging people with learning disabilities and autistic people in this dataset from 24th March, although over 20% of people have not been flagged at all (whether they are a person with learning disabilities or an autistic people, or not). 

The graph below shows the number of people flagged as a person with learning disabilities or autistic person who died from confirmed COVID-19 in hospitals from 24th March up to 16th December 2020. The first column on the left is so large because it covers 6 weeks rather than 1 week, at the height of the first peak of the pandemic. 

This graph shows a similar pattern over time to the LeDeR information on COVID-19 deaths I discussed above - large numbers of people dying in the first peak of the pandemic, falling to very few deaths in the summer but starting to increase again from October onwards (although not anywhere near the level of the first peak).

Overall, this dataset reports that 663 people with learning disabilities in England died of confirmed COVID-19 in hospital in England. If we assume that unflagged people include people with learning disabilities and autistic in the same proportion as flagged people, this figure would be almost 840 people.

In the first peak of the pandemic, these figures suggested that people with learning disabilities and autistic were 4-5 times more likely to die than you would expect from the number of people with learning disabilities registered with GPs. So far in the second peak, it looks like people with learning disabilities and autistic people are twice as likely to die than you would expect - an improvement on the first peak, but still a very high figure.

The final graph below just puts all this information together into a graph on the cumulative number of people with learning disabilities who have died COVID-19 and non-COVID=19 deaths over 2020 according to these two data sources. I'm not sure it adds much, but maybe it's helpful as an alternative way of visualising the information.

I don't want to add a lot of commentary to this, but there are three things I will say:

1) The number of people with learning disabilities who died from COVID-19 in the first peak of the pandemic should be a permanent stain on the reputation of people in a position to do something about this who were warned early on and did nothing.

2) We cannot be complacent about what is happening to people with learning disabilities during the second peak of the pandemic in England - this peak is not over yet and we are in the depths of winter after, for many people with learning disabilities, long periods of isolation and restriction.

3) To my mind, this is yet further evidence for people with learning disabilities as a population to be prioritised for the COVID-19 vaccine. Dithering about this or ignoring it until it's too late is not good enough - people and services need to start preparing now if vaccinating people with learning disabilities is to happen comprehensively.

Paid employment and adults with learning disabilities in England - a 2019/2020 update

This blogpost updates previous posts on what the statistics say about the self/paid employment of working age (aged 18-64 years old) adults with learning disabilities in England. These figures are provided by local authorities every year, and since 2014/15 have only been provided for people getting long-term social care (before 2014/15 it was the larger group of people known to local authorities as a person with learning disabilities, even if they weren't getting long-term social care support). This means that these figures don't include the much, much larger group of adults with learning disabilities who aren't known to local authorities or GPs and who don't get any kind of support related to their learning disability.

It is important to note that these statistics are collected for financial years (April to March), so they will represent what was happening for adults with learning disabilities up to March 2020, before COVID-19 really hit.

Some of the numbers reported here are included in the NHS Digital Adult Social Care Outcomes Framework (indicator 1E, if you're interested), although some of the numbers are more buried in publicly available but less accessible CSV datafiles. 

What do the numbers tell us?

The first graph below shows the number of working age adults with learning disabilities that councils say are in any self/paid employment, broken down by whether people are in employment for 16+ hours per week or less than 16 hours per week (and 1 hour a week can count in these statistics). The gap between 2013/14 and 2014/15 is because of the change in data collection I mentioned earlier, so numbers before and after then can't be compared, and 2008/2009 was the first year that information was collected so it's rather dodgy for that year.

 

According to these figures, in 2019/20 there were 7,524 working age adults with learning disabilities getting long-term social care in any form of self/paid employment. After a couple of years of the number of people in paid/self employment edging towards 8,000, this a drop back to earlier years. Consistent across the years is that most of the people in employment (71% of people in 2019/20) are working for less than 16 hours per week.

What do these numbers mean in terms of employment rates? The graph below shows the employment rates for working age adults with learning disabilities over the same time period. The columns show the overall employment rate - in 2019/20 this was 5.6%, compared to 76.6% for adults generally in February 2020. This is the lowest employment rate for adults with learning disabilities recorded since the statistics were changed in 2014/15.

 The lines on the graph show employment rates for men and women with learning disabilities separately. Employment rates for men (the purple line) are consistently higher (6.2% in 2019/20) than employment rates for women (the blue line) (4.8% in 2019/20), with this gender employment gap staying fairly stable over time.

 

Employment rates are also very different across regions, as you can see in the next graph below which shows employment rates for different regions from 2014/15 to 2019/20. While there are some fluctuations over time (and there have been questions about the quality of the data), the East Midlands (3.6% in 2019/20), West Midlands (4.2%) and North West (4.3%) consistently report lower employment rates. London (7.0%) and recently the South East (6.9%) report the highest employment rates.

 

At an individual council level these differences in employment rates are even bigger, ranging from virtually 0% to over 20%. At the extreme ends, Portsmouth reported an employment rate of 0.2%, Hull 0.4%, Hammersmith & Fulham 0.7%, Gloucestershire 0.8% and County Durham 0.9%. At the opposite extreme, Wokingham reported an employment rate of 19.4%, Hartlepool 23.5% and Hounslow 26/8%.

The last graph below sounds an appropriate note of caution about the reliability of information on self/paid employment provided by councils. This shows, for all working age adults with learning disabilities getting long-term social care, whether councils say they are: 1) in self-paid employment; 2) not in employment but actively seeking work (and presumably therefore liable to potential benefit sanctions); 3) not in employment but not actively seeking work. There is also a fourth category, where councils say they don't know the employment status of the person.

 

Over time, the number of people whose employment status is unknown has decreased rapidly, from 44% of working age adults with learning disabilities in 2014/15 to 22% of people in 2019/20 (22% is still a big chunk, however). It is unclear how councils are making decisions about whether to record someone as actively seeking work or not.

Overall, this update shows, even before COVID-19 really hit, reducing employment rates (from a ridiculously low base) for working age adults with learning disabilities getting long-term social care, with most work being extremely part-time, a gender employment gap and big and scarcely explicable differences in employment rates across areas. 

As far as we know, many more than 5.6% of working age adults with learning disabilities want to work. We know that secure, stable paid employment for people with learning disabilities is associated with better physical and mental health, and we know that supported employment is highly cost-effective. This is one clear case where we should be able to do much better than the pre-COVID-19 status quo.

 

 

COVID-19 vaccination and people with learning disabilities – where should people with learning disabilities come in the list of priorities?

News of the potential effectiveness of COVID-19 vaccines has started to focus attention on priorities – as batches of the vaccine become available, who should be prioritised to get them first? This post sets out some of the evidence that, to my mind at least, builds a case for people with learning disabilities being a much higher priority for COVID-19 vaccinations than is currently being suggested.

What is the current suggested priority list for the COVID-19 vaccination? Here is the most recent interim advice from the Joint Committee on Vaccination and Immunisation (JCVI), published in September:

“This interim ranking of priorities is a combination of clinical risk stratification and an age-based approach, which should optimise both targeting and deliverability. A provisional ranking of prioritisation for persons at-risk is set out below:

• ·    older adults’ resident in a care home and care home workers
• ·       all those 80 years of age and over and health and social care workers
• ·       all those 75 years of age and over
• ·       all those 70 years of age and over
• ·       all those 65 years of age and over
• ·       high-risk adults under 65 years of age
• ·       moderate-risk adults under 65 years of age
• ·       all those 60 years of age and over
• ·       all those 55 years of age and over
• ·       all those 50 years of age and over
• ·       rest of the population (priority to be determined)^”

As you can see, this is heavily weighted towards older people aged 65 or over. Using ONS 2019 population estimates, this would mean that over 10 million people aged over 65 in England (and a majority of the 600,000 care and nursing home workforce who will be working with older people) would get COVID-19 vaccinations before anyone aged under 65, no matter what their risks of dying from COVID-19.

This is going to be a serious problem for people with learning disabilities.

The recent authoritative Public Health England analysis of COVID-19 deaths amongst people with learning disabilities in the first wave of the pandemic reported rates of death 3-6 times higher amongst people with learning disabilities compared to people generally. These rates of death become even more disproportionate at younger (adult) ages, with a peak age of COVID-19 deaths at age 55-64. The PHE analysis of LeDeR notifications suggests that COVID-19 death rates for people with learning disabilities aged 55-64 are higher than death rates for the general population aged 75+, and much higher than death rates for the general population aged 65-74 (see the graph below, copied from the PHE report). COVID-19 death rates for every age group of adults with learning disabilities aged 35 years upwards (35-44; 45-54; 55-64) are higher than general population COVID-19 death rates for people aged 65-74, who are a higher priority for vaccination.

The PHE report also shows that, because people with learning disabilities were dying 15-20 years younger than other people even before COVID-19 hit, there are only around 13,000 older adults aged 65+ registered with GPs in England. For the general population, vaccinating everyone aged 65+ will cover around 24% of the adult population. For people with learning disabilities, vaccinating everyone aged 65+ will only cover around 5% of all adults with learning disabilities registered with GPs (there are around 240,00 adults with learning disabilities aged 18-64 registered with GPs). [UPDATE 2nd Dec 2020 - I made a couple of errors here. There are around 25,000 older adults with learning disabilities out of around 250,000 adults with learning disabilities registered with GPs. So it's 10% rather than 5% - the general point still stands however].

Going down the vaccination priority list, once the 10 million+ people aged 65 or over and care/nursing home workers for older people have been vaccinated, the next priorities are people aged under 65 who are ‘high risk’, then people aged under 65 who are ‘moderate risk’.

I’m assuming that people defined as ‘high risk’ are in one of the ‘clinically extremely vulnerable’ groups used in the 18^th November government guidance on shielding. The full list in the guidance is here:

“Adults with the following conditions are automatically deemed clinically extremely vulnerable:

• ·       solid organ transplant recipients
• ·       those with specific cancers:
• o   people with cancer who are undergoing active chemotherapy
• o   people with lung cancer who are undergoing radical radiotherapy
• o   people with cancers of the blood or bone marrow such as leukaemia, lymphoma or myeloma who are at any stage of treatment
• o   people having immunotherapy or other continuing antibody treatments for cancer
• o   people having other targeted cancer treatments that can affect the immune system, such as protein kinase inhibitors or PARP inhibitors
• o   people who have had bone marrow or stem cell transplants in the last 6 months or who are still taking immunosuppression drugs
• ·       those with severe respiratory conditions including all cystic fibrosis, severe asthma and severe chronic obstructive pulmonary disease (COPD)
• ·       those with rare diseases that significantly increase the risk of infections (such as severe combined immunodeficiency (SCID), homozygous sickle cell disease)
• ·       those on immunosuppression therapies sufficient to significantly increase risk of infection
• ·       adults with Down’s syndrome
• ·       adults on dialysis or with chronic kidney disease (stage 5)
• ·       pregnant women with significant heart disease, congenital or acquired
• ·       other people who have also been classed as clinically extremely vulnerable, based on clinical judgement and an assessment of their needs. GPs and hospital clinicians have been provided with guidance to support these decisions”

You will notice that adults with Down syndrome are on this list, presumably because of recent research reporting more people with Down syndrome than other people with learning disabilities are dying of COVID-19. For some health conditions on this list, particularly for those aged under 65, people with learning disabilities are more likely to experience them than other people, including severe respiratory conditions and chronic kidney disease.  

Going down to the next priority level for COVID-19 vaccination, those at ‘moderate risk’, again people with learning disabilities aged under 65 are more likely than other people to experience a range of the health issues in the ‘moderate risk’ list below, including: lung conditions, heart disease, diabetes, chronic kidney disease (yes I know it appears in both lists – I’m not the person to ask why this is), and being very overweight.  

“People at moderate risk from coronavirus include people who:

• ·       are 70 or older
• ·       have a lung condition that's not severe (such as asthma, COPD, emphysema or bronchitis)
• ·       have heart disease (such as heart failure)
• ·       have diabetes
• ·       have chronic kidney disease
• ·       have liver disease (such as hepatitis)
• ·       have a condition affecting the brain or nerves (such as Parkinson's disease, motor neurone disease, multiple sclerosis or cerebral palsy)
• ·       have a condition that means they have a high risk of getting infections
• ·       are taking medicine that can affect the immune system (such as low doses of steroids)
• ·       are very obese (a BMI of 40 or above)
• ·       are pregnant”

We don’t know how many adults with learning disabilities aged under 65 are experiencing one or more of these ‘moderate risks’ (as people often have more than one health issue), and we also know very little about how health issues commonly experienced by people with learning disabilities (such as constipation, gastro-intestinal reflux and dysphagia, which can all be implicated in aspiration pneumonia for example) relate to risk of serious consequences of COVID-19.

So, as I understand it the current COVID-19 vaccination priority list will first get through well over 10 million vaccinations of people aged over 65 (which will include only 13,000 older adults with learning disabilities registered with GPs) and care/nursing home workers working with older people. Only then, through complex processes of gatekeeping, will adults aged under 65 with learning disabilities who are ‘clinically extremely vulnerable’ (an uncertain but likely fairly small proportion of people aged under 65 with learning disabilities) get the COVID-19 vaccine, as part of the approximately 1 million people in England aged under 65 who are on the shielded patient list.

And it is only after vaccinating approximately 12 million people will adults with learning disabilities aged under 65 at ‘moderate risk’ be vaccinated, involving even more complicated and uncertain gatekeeping, and where there are likely to be larger proportions of people aged under 65 with learning disabilities but still missing a lot of people with relevant health issues.

 

So, in summary I think this priority list for COVID-19 vaccinations will vaccinate over 10 million older people and care workers first, which will only include around 13,000 older adults with learning disabilities. At this point the vaccination process will have missed 95% of adults with learning disabilities registered with GPs, even though death rates from COVID-19 for younger adults with learning disabilities from 35 years upwards are higher than those for the general population aged 65-74. Once the vaccination priority process moves on to adults aged under 65, the focus on the ‘clinically extremely vulnerable’ then those at ‘modest risk’ will involved complicated and inefficient gatekeeping, and will still miss large numbers of adults with learning disabilities with health conditions potentially putting them at risk. And this is before we even start thinking about the potential mental and physical health consequences of continued lockdowns and restrictions for people with learning disabilities and those who support them, whether family or paid workers.

 

My proposal is really straightforward. As with flu vaccinations now (and I know COVID-19 is definitely not flu, but many of the risk factors for people with learning disabilities are similar), put adults with learning disabilities of all ages (registered with GPs if you need an institutional peg) as one of the most urgent priorities for COVID-19 vaccinations. In total this would be around 250,000 people known to GPs in England, a fairly small population in the grand scheme of what is being proposed with vaccinations, and working through GP registrations there is an infrastructure there to find people without the need for complicated gatekeeping. An equal priority for vaccination would be people who are in regular, close contact with the person, including family (many of whom are likely to be in current high priority vaccination categories anyway) and paid workers supporting people. As well as saving lives amongst a group of people who already get a raw deal from health services and have been disproportionately hit by COVID-19, just think what a difference it will make to people being able to live their lives when restrictions and lockdowns may have taken a real toll.

Restraints used on people with learning disabilities and autistic people in inpatient units through COVID-19 - an update

Summary

This blogpost updates a post I wrote about restrictive interventions in inpatient services used on people with learning disabilities and autistic people leading up to the first peak of COVID-19 in England. 

The last blogpost had information up to the end of March 2020 - this blogpost includes information up to the end of May 2020.

It is important to remember that these statistics on ‘restrictive interventions’ (restraints) seriously underestimate the true picture, because many independent sector inpatient services do not report into the MHSDS dataset where restraints are recorded.

From January to May 2020, the percentage of people with learning disabilities and/or autistic people in inpatient units who were subject to restraint increased as the overall number of people in inpatient units decreased. In January 2020, 11.3% of people in inpatient units were subject to some form of restraint, rising to 16.2% of people in May 2020. In total, 540 people in May 2020 were subject to restraint at least once in the month, with a total of 5,520 restraints reported.

Those people who did experience some form of restraint experienced restraint on average 9.6 times in January 2020 (almost once every 3 days), increasing to 10.2 restraints per person in May 2020.

There were increases in May 2020 in almost all types of restraint, with particularly stark increases in prone, supine and 'other' forms of physical restraint, chemical restraint in the forms of oral medication and injections of rapid tranquilisers, and seclusion.

As restrictions in inpatient services related to COVID-19 continue, these statistics show sharply increasing use of severe physical restraint, chemical restraint and seclusion on people with learning disabilities and autistic people in these services. 

Restraints in inpatient services

A couple of months ago, I wrote a short series of blogposts about what (if anything) the statistics could tell us about what happening to people with learning disabilities and autistic people in inpatient services leading up to and going through the first peak of COVID-19 in UK in April. This blogpost updates the previous post on restraints (restrictive interventions) that people were being subject to. The previous post (please have a look at that post for background on the statistics and their limitations, which I won't repeat here) only had information up to the end of March, before peak COVID-19. This update extends that information (supplied by NHS digital on a monthly basis) to the end of May, starting to look through the first COVID-19 peak when further restrictions on people in inpatient settings and changes to working practices were started to be imposed. 

From January to May 2020, the source of the information used here (the Mental Health Services Dataset, or MHSDS) reports a reduction in the number of people with learning disabilities and autistic people in inpatient services (including people in specialist learning disability inpatient services and people in mainstream mental health inpatient services), from 3,810 people at the end of January to 3,335 people at the end of May. Throughout this time, there have been particularly big reductions in the number of people with learning disabilities and autistic people in mainstream mental health inpatient services for very short (i.e. days or weeks rather than months or years) periods of time.

For those people who were in inpatient services at this time, what were they subjected to in terms of restraint?

 

The graph shows the number of people with learning disabilities and autistic people (in independent sector and NHS inpatient services) who were subject to at least one episode of restraint in each month, from January to May 2020. It also shows the total number of episodes of restraint that people were subject to in the same time period.

The pattern is similar for people in both independent sector and NHS inpatient services - a picture of general reductions from January to April (remember, the number of people in inpatient services is also decreasing), then in May an increase in the number of people being subject to restraint and particularly sharp increases in the number of restraints that people are being subject to.

In May 2020, overall 16.2% of all people with learning disabilities and autistic people were subject to at least one episode of restraint, with each person subject to restraint experiencing an average of 10.2 restraints (one every three days) during the month.

As the next graph shows, while the percentage of people subject to restraint increased in May amongst all age groups, younger people aged 18-24 were particularly likely to be subject to restraint throughout.

What particular types of restraint were people subject to, and how do they change over time? The two graphs below show information on the types of physical restraint recorded by inpatient services to the MHSDS, in terms of the number of people subject to restraint and the number of restraints people were subject to.

 

Both of these graphs show a consistent picture, of flat or gradually decreasing reported physical restraints from January to April 2020, then stark increases in many types of physical restraint in May, particularly prone restraint, supine restraint, and physical restraints reported as 'other' (a particualrly worrying trend given the alarming number of categories of physical restraint catalogued here). There were also reported increases in the number of times standing restraint, seated restraint and restrictive escorting were used, without big increases in the number of people subject to them.

 

The final two graphs report the same information for chemical restraint, mechanical restraint, seclusion and segregation. Again we see a similar pattern, with particularly sharp increases in reported chemical restraint in the forms of rapid tranquiilising injections and oral medication, and in reported seclusion.

I find these sharp increases in all sorts of heavy-duty restraints in May (when presumably lockdown restrictions and COVID-19-related working practices have been in place for some time) really, really worrying. Whether you're subject to these restraints yourself in an inpatient unit, or spending time in an inpatient unit where these restraints are being frequently used on people around you, it can't feel like you're in a place that is therapeutic and helping you to better physical and mental health.

Transparency and openness of these inpatient units to friends and family members of people within them (perfectly possible while managing COVID-19 infection risk), let alone any sign of a coherent strategy throughout COVID-19 for people in inpatient units, has been conspicuously lacking. To my mind, these statistics only reinforce the urgency of the need for scrutiny and action.

Slide set on what we know about people with learning disabilities and COVID-19

This is an unfancy version of a slide set I did recently for a talk about what we know so far about people with learning disabilities and COVID-19. Hopefully the embedded powerpoint works and the slides make some sort of sense.

Alternatively, this link might work if you can't get access to Sharepoint. 

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).