I am a 9.5 in 10 (with apologies to UB40): social care employment statistics and people with learning disabilities

This blogpost is the third in a set looking at various aspects of the social care statistics recently published by NHS Digital for 2021/22, focusing on adults with learning disabilities in England. The first two blogposts gave an overview of trends in social care support and social care spending for adults with learning disabilities.

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 2022, through the continuing COVID-19 pandemic in England. It is also really important to say that the quality of this information has been questioned at the best of times – there are massive caveats about the extent to which local authorities would be able to collect this kind of information accurately throughout a pandemic.

Some of the numbers reported here are included in the 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 2021/22 there were 6,380 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 is now the lowest number of people in paid employment since the first dodgy year of data collection in 2008/09. Consistent across the years is that most of the people in employment (71% of people in 2021/22) 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 2021/22 this was 4.8%, compared to 76% for adults generally in March 2022. 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 (5.3% in 2021/22) than employment rates for women (the blue line) (4.1% in 2021/22 with this gender employment gap staying fairly stable over time.

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 21% of people in 2021/22 (21% 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, bearing in mind understandable caveats about the quality of the information that could be collected during the continuing COVID-19 pandemic, further reductions in 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, and a gender employment gap. 

As far as we know, many more than 5.1% 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. Building sustainable, fulfilling paid employment for people with learning disabilities, in our current circumstances of wide-ranging labour shortages, surely has to be an urgent ‘building back better’ priority? Perhaps the ambitions of the May 2022 Government adult social care reform white paper will be reflected in improved figures next year...

I got bills: Social care spending 2021/22 and people with learning disabilities

NHS Digital have recently released their annual tranche of statistics concerning social care for adults in England. This blogpost is the latest in a series about social care statistics concerning adults with learning disabilities in England, updating the statistics to include the latest 2021/22 figures. Because the reporting year for these statistics runs from April to March, these are the second set of annual statistics that might tell us something about the impact of the COVID-19 pandemic on social care services for adults with learning disabilities. When looking through these statistics it is important to remember the pressures local authorities have been under, which might have affected the quality of the information collected.

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). I've tried to use some of the statistics to answer three questions about spending on social care services for adults with learning disabilities (questions relating to how many adults with learning disabilities are using social care are in a previous blogpost).

Question 1: How much money are councils spending on social care services for adults with learning disabilities?

The graph below shows gross expenditure by local authorities on social care for adults with learning disabilities from 2014/15 to 2021/22, broken down by age band and categories of spending. 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, which as we enter a time of high inflation is going to be even more important to take into account. However, using 2014/15 as a baseline (there had already been real-terms cuts to social care budgets by this point), the graphs also includes lines of what expenditure would be if social care expenditure only increased in line with inflation, using adult social care inflation figures from the invaluable PSSRU publication Unit Costs of Health and Social Care (2021 edition). 

A couple of observations. Overall, despite the number of adults getting social care decreasing during 2021/22, social services expenditure continued its steady upwards trajectory in absolute terms in 2021/22 at an annual growth rate of 4% from 2014/15. Local authority gross expenditure on social care for adults with learning disabilities totalled £6.5 billion in 2021/22, 30% of all local authority expenditure on adult social care. For both adults with learning disabilities aged 18-64 and adults with learning disabilities aged 65+, increases in expenditure ran slightly ahead of inflation. This indicates local authorities trying to protect these budgets, while at the same time falling short of what would be needed given projected increases in the population of adults with learning disabilities needing social care support.

The two line graphs below show trends in expenditure on specific types of social care service for adults with learning disabilities aged 18-64 and 65+ (with different scales for the two age groups). Spending on supported living continues to increase and has now overtaken spending on residential care - these two are by far the largest components of social care expenditure to support adults with learning disabilities.

 

Question 2: How much are people paying for social care in 'client contributions'?

When looking at the figures above on expenditure, it is important to remember that this is gross current expenditure - it does not take account of any income that might be coming into local authorities providing social care services. One source of income is 'client contributions' - money for social care support that is paid by people drawing on social care support or those close to them.

The two graphs below show the amount of income received by local authorities in client contributions for different types of social care support, for services for adults with learning disabilities aged 18-64 and for adults with learning disabilities aged 65+. As with the earlier overall expenditure graph, using 2014/15 as a baseline the graphs also includes lines of what expenditure would be if client contributions for social care only increased in line with inflation, using adult social care inflation figures from the PSSRU publication Unit Costs of Health and Social Care (2021 edition). 

For both adults aged 18-64 and adults aged 65+, the biggest types of client contributions were for residential care and contributions under the 'fairer charging' regimen and its successors. Also for both age groups, client contributions over time have increased faster than inflation, and in total added up to £472.7 million in 2021/22, representing 7% of total gross social care spending.

Question 3: Are unit costs changing over time?

Unit costs for residential care and nursing care for adults with learning disabilities continued their upward trend in 2021/22 for adults aged 18-64. For adults aged 18-64, the average cost to local authorities of residential care was £1,726 per person per week and nursing care £1,568 per person per week. Unit costs were cheaper in 2021/22 for adults aged 65+ compared to adults aged 18-64 (£1,155 per person per week in residential care; £792 per person per week in nursing care), with unit costs decreasing for adults aged 65+ from 2020/21 to 2021/22. It is worth noting that unit costs are higher for these services for adults with learning disabilities aged 18-64 than for any other group of people getting social care.

 

Summing up

Social care spending for adults with learning disabilities reported in 2021/22 seems to continue longer-term trends, with increases just above inflation, continued increases in spending on supported living, and both supported living and residential care being the biggest types of social care spending. Client contributions also continue to rise faster than inflation year-on-year. There is a more mixed picture when it comes to the unit costs of residential and nursing care.

Given that there were 2,275 fewer adults getting social care at the end of March 2022 compared to the end of March 2020, with high inflation and staff shortages a present reality, what kind of a future are councils planning for? How much are councils spending on block contracts irrespective of whether people want to live there, and on 'voids' where people aren't even living? A future combining a high eligibility barrier with expensive, restrictive service options predominating seems the very opposite of value for money.

The missing thousands - social care statistics 2021/22 and people with learning disabilities (1)

NHS Digital have recently released their annual tranche of statistics concerning social care for adults in England. This blogpost is the latest in a series about social care statistics concerning adults with learning disabilities in England, updating the statistics to include the latest 2021/22 figures. Because the reporting year for these statistics runs from April to March, these are the second set of annual statistics that might tell us something about the impact of the COVID-19 pandemic on social care services for adults with learning disabilities. When looking through these statistics it is important to remember the pressures local authorities have been under, which might have affected the quality of the information collected.

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). I've tried to use some of the statistics to answer four questions (questions relating to social care spending and employment will be in two follow-up blogposts).

Question 1: How many adults with learning disabilities were getting access to social care in 2021/22?

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.

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 at some point during the year from 2014/15 to 2021/22), and also the number of adults aged 18-64 in residential or nursing care.

This graph suggests that some trends evident from 2014/15 to 2018/19 (before the COVID-19 pandemic) for adults with learning disabilities aged 18-64 have continued through to 2021/2022, while other trends have changed pace or reversed. 

Residential care has continued to reduce year-on-year from 26,975 people in 2014/15 to 21,880 people in 2012, as has nursing care (1,265 people in 2014/15 through to 1,035 people in 2021/22). The number of people getting social care in the form of direct payments increased from 2014/15 (21,580 people) to 2020/21 (28,015 people), but has levelled off in 2021/22 (27,930 people). The number of people getting social care at least partly in the form of a direct payment increased from 2014/15 (13,265 people) to 2019/20 (17,255 people), but has decreased since (16,265 people in 2021/22). The most common form of long-term social care support was the council-managed personal budget (the extent to which many of these feel any different to council-commissioned community services is debatable), which continues to increase over time (from 49,150 people in 2014/15 to 61,530 people in 2021/22). Finally, while the number of people getting council-managed community support decreased substantially from 2014/15 (12,000 people) to 2020/21 (4,900 people), this number increased sharply in 2021/22 (8.090 people).

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 2020/21 they still represented 17% of all adults with learning disabilities aged 18-64 getting long-term social care.

In total 132,465 adults with learning disabilities aged 18-64 were getting long-term social care at some point in 2021/22. While there had been a steady trend of increasing numbers of adults with learning disabilities getting long-term social care year on year from 2014/15 to 2019/20, from 2019/20 to 2021/22 there have been two years of decreases in these numbers - there were 2,965 fewer adults with learning disabilities aged 18-64 getting long-term social care at some point in 2021/22 than in 2019/20. 

The second graph below presents the same information for adults with learning disabilities aged 65+. 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.

Unlike the figures for adults with learning disabilities aged 18-64, there is a continuous year-on-year upward trend in the numbers of adults with learning disabilities aged 65+ getting long-term social care, from 14,570 people in 2014/15 through to 18,405 people in 2021/22. 

The upward trend for the number of people in residential homes and nursing homes was interrupted in 2020/21 with a slight dip, but has resumed from 2020/21 to 2021/22, when 5,830 people were in residential homes and 860 people were in nursing homes. People getting long-term social care in the forms of direct payment only (620 people in 2014/15; 1,065 people in 2021/22), part direct payment (505 people in 2014/15; 785 people in 2021/22), and council-managed personal budgets (5,920 people in 2014/15; 9,350 people in 2021/22), with occasional fluctuations, have continued to trend upwards over time. The number of people getting council-commissioned community support has continued to decrease over time (1,430 people in 2014/15; 515 people in 2021/22).

For adults with learning disabilities aged 65+ getting long-term social care, 36% were getting this care in the form of residential or nursing care.

However, the statistics I’ve presented so far are for people getting long-term social care at some point in each year. This may under-estimate the impact of COVID-19 on the number of people currently getting social care, particularly where people have died during the year. The NHS Digital statistics also have snapshot figures on the number of people with learning disabilities getting adult social care at the end of each financial year, which we can compare to the number of people getting social care at some point during the year. The graph below shows this information for adults with learning disabilities aged 18-64, from 2014/15 to 2021/22. In 2020/21 and 2021/22, there is a clear reversal in the upward trend, with both people getting long-term social care at some point in the year (132,465 people) and people getting long-term social care support at the end of the financial year (124,635 people) falling for two consecutive years.

 

The next graph below shows the same information for people aged 65+, with a different pattern to people aged 18-64. The number of people getting long-term social care support at some point in the year continues to increase into 2021/22. The number of people getting long-term care at the end of the 2020/21 financial year dropped from 2018/19 to 2020/21, but increased again from 2020/21 to 2021/22. 

While these statistics are difficult to interpret, there were 2,275 fewer adults with learning disabilities of all ages getting long-term social care at the end of March 2022 compared to the same time two years before.

There is also the question of whether the number of adults with learning disabilities getting long-term social care is increasing in line with projected increases in the number of adults with learning disabilities needing social care. The graph shows the total number of adults with learning disabilities aged 18+ getting long-term social care support at any time in the year and at the end of each year, using the same overall format as the graphs above. Added to the graph are projected numbers of adults with learning disabilities requiring social care support, taken from population projections published in 2012 and baselined for 2014/15. There are two projections using dashed lines - the dark blue dashed line is the number of adults with critical or substantial needs only, and the light blue dashed line is for the number of adults with critical, substantial or moderate needs. 

As the graph shows, up to 2018/19 the number of adults getting long-term social care was just about keeping pace with the projected numbers of adults with critical or substantial needs (which is drawing the eligibility hurdle really quite high), but by 2021/22 the gap between the number of people projected to need social care and those actually getting social care was around 10,000 people. The gap is even greater if you take the projected number of adults with learning disabilities with critical, substantial or moderate needs (a gap of around 19,000 people in 2021/22).

Question 2: Where are people with learning disabilities living?

The headline social care statistics only report the living situations of people living in residential care and nursing homes (social care support for people in other living situations is characterised by whether they’re getting council-commissioned support or some form of personal budget). The number of adults with learning disabilities in residential and nursing care from 2014/15 to 2021/22 is in the graph below, broken down by whether people are aged 18-64 or 65+. For people aged 18-64, the trend is for a substantial decrease in the number of people living in residential care – a reduction of 19% in 7 years, with a similar percentage drop (18%) for adults aged 18-64 in nursing care. For adults with learning disabilities aged 65+, the number of people in residential care and nursing care has been gradually increasing up to 2019/20 (although with dips in 2017/18 and 2020/21). 

More hidden in the social care statistics is more detailed information on where local authorities think that adults with learning disabilities aged 18-64 who are getting long-term social care are living (a holdover indicator introduced, along with employment, with Valuing People). The monster graph below stacks up all the different types of living situation, from 2014/15 to 2021/22 (again note the ominous decreases in 2020/21 and 2021/22). 

To hopefully make this a bit more digestible, I’ve picked out trends for the most common types of living situation in the graph below. As the graph shows, the most common (and increasing up to 2019/20) living situations for adults with learning disabilities aged 18-64 were not residential or nursing care. By far the most common living situation was people living with their families (47,835 people in 2021/22; 36% of people recorded in this database). Over 30,000 people were living in some form of supported accommodation in 2021/22 (31,960 people; 24%), over 20,000 people were tenants or owner-occupiers (20,035 people; 15%) and 3,375 people (3%) were living in a Shared Lives arrangement. Throughout the COVID-19 pandemic adults with learning disabilities in all these living situations (and that’s without thinking of the majority of adults with learning disabilities, who do not get any social care support) were not exactly at the front of the queue when it came to government guidance, support with PPE and the essentials of daily life, repurposing much-needed social care support, and support to ensure that support workers could minimise the COVID-19 risks to themselves and the people they were supporting. 

Question 3: What happened to people trying to get a social care service?

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 2021/22. 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 or other forms of non-social care support than in any other year. There seems to be an upward trend in the number of adults with learning disabilities coming to the attention of social services from 2014/15 to 2018/19, followed by a decrease from 2018/19 through to 2020/21, and a recent increase from 2020/21 to 2021/22 (although not to the levels of 2019/20).

In terms of what was happening in 2021/22, 1.030 adults with learning disabilities (almost all of whom were aged 18-64) came to social services as new clients.

Of these, 40% (415 people) were identified as having no needs and therefore requiring no services. For 14% (140 people) the response from social services was to signpost people to universal services or other forms of non-social care support. Almost one sixth of people (180 people; 17%) went on to get some form of low level or short-term support from social care, with a similar number (175 people; 17%) going on to get some form of long-term social care support. Very few (40 people; 4%) declined a service that was offered. 

Throughout the two years of the pandemic, the number of adults with learning disabilities coming to the attention of social care has been lower than in any of the previous three years, with a minority of this group getting any form of social care support during the COVID-19 pandemic beyond signposting elsewhere. 

Question 4: What do adults with learning disabilities think about the social care services they're getting?

At the same time as the publication of the 2021/22 social care statistics, information from the latest Personal Social Services Adult Social Care Survey for 2021/22 was also released by NHS Digital. This is administered by councils to thousands of adults making use of social care services every year, and asks (in carefully developed and tested standard and easy read formats) a range of questions about people's experiences of social care services and about people's wellbeing and health.

The graph below presents information from this survey from 2014/15 to 2021/22 for three groups of adults getting social care services; people with a primary care need of learning disabilities, people with a primary care need of physical support, and people with a primary mental health care need. The responses to four questions are summarised in the graph. For most groups, in response to the four questions at almost all time points there is little change over time (the exception being the percentage of people with learning disabilities saying they were not depressed or anxious, which increased by 16% in 2018/19 and has stayed at this higher level since), and overall people with learning disabilities report a consistently much more positive experience than the other two groups of people.

The general lack of change over this time period, when things have got harder for a lot of people getting social care and including the COVID-19 pandemic (although many groups were marginally more positive in 2020/21, at the height of lockdowns, than before or since), reinforces other research suggesting that these kinds of questions can be relatively insensitive to changes in people's circumstances.

The higher positivity of people with learning disabilities may be a genuine difference - it may also partly be a function of different question formats (people with learning disabilities are more likely to answer easy read format questions than other groups), and partly because people with learning disabilities were more likely to get help to answer questions, particularly from care workers, than the other two groups.

Summing up

To sum up, it seems like the continuing impact of the COVID-19 pandemic and the response of social care services to the pandemic has magnified some longer term trends in social care services, while putting other trends into reverse. The big, and grim, difference is that 2,275 fewer adults were getting long-term social care at the end of March 2022 compared to the end of March 2020, reversing a long-term trend of year-on-year increases. The gap between the number of adults with learning disabilities likely to need social care support and those getting social care support is now into the tens of thousands. This is particularly acute amongst adults aged 18-64 rather than adults aged 65+. Fewer requests for social care support are coming through to local authorities, and only a minority of these requests result in social care support.

There is also a question about how sensitive these statistics are to the seismic changes to people’s social care support that people with learning disabilities have been reporting throughout the COVID-19 pandemic. For example, in the Coronavirus and people with learning disabilities project many people reported paying for social care services they weren’t currently getting, getting less of a service than they used to, or some services which involved going out being replaced by online services, none of which would be picked up by these statistics. This research project also reports changes to people's health and wellbeing over time that are not being picked up by the Adult Social Care Survey.

Why don't NHS England want to know about over 1,000 people in inpatient services?

NHS England are doing another consultation of changes they are making to the information they collect in the Assuring Transformation dataset about the number of people with learning disabilities and autistic people in inpatient services. It's for data gatherers and is not accessible https://nhs-digital.citizenspace.com/standards-assurance/assuring-transformation-data-collection-v4/ 

This consultation describes the Assuring Transformation (AT) dataset as the 'definitive source of information on inpatient numbers and activity'. This short blogpost is me, once again, with a reminder that this is not the case. There is another dataset routinely collected by mental health service providers, called the Mental Health Services Dataset (MHSDS), that is much more comprehensive in its coverage. I'll try and show why this matters by just looking at figures at the end of May 2022 (the most recent information we have).

At the end of May 2022, AT reported that there were 2,075 autistic people and people with learning disabilities in inpatient services. MHSDS reported there were 3,205 people, over 50% and 1,000 people more than the AT dataset. If you're redesigning a national plan, would you not be interested in these extra 1,000 people? 

If you look at the figures for specific provider organisations, the biggest discrepancies in reporting are in the organisations with the most people with learning disabilities and autistic people in their inpatient services. So, here's a list of the organisations where there's a discrepancy of 50 or more people between the AT and MHSDS datasets - many of these will be names you recognise:

Cygnet Healthcare Ltd.    AT - 195 people     MHSDS - 360 people 

(so 165 autistic people and people with learning disabilities in their inpatient services are not visible in the AT dataset, and presumably invisible to the commissioners that provide the data for AT)

Elysium Healthcare.        AT - 160 people    MHSDS - 235 people (75 people invisible to AT)

Partnerships in Care Ltd. AT - 95 people       MHSDS - 170 people (75 people invisible to AT)

Priory Group Ltd.            AT - 130 people    MHSDS - 65 people

(this is one of a small number of organisations where there are more people recorded in the AT dataset than in the MHSDS, so presumably there are people in inpatient services according to AT that don't count as mental health services according to the MHSDS???)

St Andrews Healthcare.   AT - 110 people    MHSDS - 170 people (60 people invisible to AT)

The Huntercombe Group.  AT - 90 people    MHSDS - no people (again, seems very odd)

Birmingham and Solihull Mental Health NHS Foundation Trust.

                                     AT - 15 people        MHSDS - 75 people (60 people invisible to AT)

Bradford District Care NHS Foundation Trust.

                                     AT - no people        MHSDS - 80 people (80 people invisible to AT)

Cumbria, Northumberland, Tyne and Wear Foundation NHS Trust.

                                     AT - 75 people       MHSDS - 145 people (70 people invisible to AT)

Greater Manchester Mental Health NHS Foundation Trust.

                                     AT - 20 people       MHSDS - 80 people (60 people invisible to AT)

Mersey Care NHS Foundation Trust.

                                     AT - 95 people    MHSDS - 145 people (50 people invisible to AT)

Nottinghamshire Healthcare NHS Foundation Trust.

                                     AT - 80 people    MHSDS - 155 people (80 people invisible to AT)

For some of the NHS Trusts in particular, some of this discrepancy is likely to be because they run generic mental health inpatient services, where people are usually inpatients for relatively short periods of time, and who the MHSDS dataset is much better at picking up than the AT dataset. And for areas looking to reduce reliance on long-stay 'specialist' inpatient services, this might be a deliberate and potentially defensible strategy. But this is highly unlikely to be the case for the private sector organisations on this list. What is going on there, and when the discrepancies between the two datasets have been known for years (and complained about repeatedly by the National Audit Office), why hasn't NHS England got this sorted out?

And meanwhile, over 1,000 people with learning disabilities and autistic people in inpatient services, at a stroke of a computer key, are rendered invisible.

Pushing the rock back up the hill - the autumn COVID booster vaccine and people with learning disabilities

For a long time now, there has been disquiet rising to desperation among people with learning disabilities and those close to people who have been trying to organise a fourth autumn COVID vaccine. Even among people with learning disabilities who have received three doses of the COVID vaccine so far, many people are reporting a real resistance among GPs and other health professionals to provide a fourth dose as part of the autumn COVID booster programme. As far as I know (and I've been a bit out of the loop for a while), I haven't seen any announcement by the JCVI (the Joint Committee on Vaccination and Immunisation) or the Department of Health and Social Care that all people with learning disabilities identified as such on GP registers will be prioritised for the autumn booster programme.

This really matters, particularly as waves of new COVID variants continue to hit and health services continue to crumble in the face of sustained impossibilities. While the vastly increased risk of death from COVID-19 amongst people with learning disabilities (particularly, but not exclusively, among people with Down syndrome) has been much reduced by COVID vaccines, people with learning disabilities are continuing to die from COVID-19. The graph below shows the weekly figures from NHS England for people flagged in health services in England as a person with learning disabilities or an autistic person dying in hospital from a confirmed COVID-19 diagnosis. This will substantially underestimate the number of people who have died from COVID-19, but with NHS England stopping monthly reports of deaths from the LeDeR programme it is now all we have. Even this underestimate reports that 186 people with learning disabilities and autistic people have died from COVID-19 in 2022 - that's more than 5 people every week. As people get older, and develop more or worsening health conditions (particularly given the current state of health services and the cumulative consequences of the withdrawal of health and social care support for many through the pandemic), waning vaccine effectiveness over time and new COVID variants could be an increasingly dangerous combination.

Before looking at what we know about COVID-19 vaccine coverage amongst adults with learning disabilities (I haven't found any reliable statistics relating to children with learning disabilities) it is crucial to say that, for various reasons, there are some people with learning disabilities for whom vaccination is not an option. This is likely to include many people who are at increased risk of serious and life-threatening consequences if they were to catch COVID-19, and for whom the complete withdrawal of sensible public health consequences to reduce COVID-19 case rates generally, alongside the near complete withdrawal of COVID testing and confusion over how to access anti-viral medications, has resulted in some people and those close to them living under conditions of virtual house arrest for well into a third year.

Bearing this in mind, what do we know about how many adults with learning disabilities have had at least one dose of the COVID-19 vaccine, and how many so far have had three doses?

Up until 22nd June, the OpenSafely platform, based on records from around 40% of GP surgeries in England, provided regular, detailed statistics on COVID-19 vaccine coverage, including information on various groups of adults with learning disabilities identified as such on GP registers. Since June 2022 they have stopped published regular updates, so from this source June is the most recent data we have.

The graph below shows the percentage of people with and without learning disabilities in older and at risk ('shielding') categories who had received at least one COVID-19 vaccine dose by 22 June 2022. Well over 90% of people with and without learning disabilities in these groups had received at least one COVID-19 vaccine dose.

The following graph shows a detailed breakdown of vaccine coverage among non-shielding adults with learning disabilities aged 16-64, according to sex, age band and ethnicity. While the overall rate of people getting at least one COVID-19 vaccine dose is approaching 90%, there are huge inequalities in vaccine coverage by ethnicity and age.

What do these percentages mean in terms of the number of adults with learning disabilities in England who have (and have not) received at least one dose of the COVID-19 vaccine? The table below shows my best guess at this number, mainly scaling up from the 40% of GP registers reported by OpenSafely. Overall, this produces an estimate that over 278,000 adults with learning disabilities have had at least one COVID-19 vaccine dose, and over 30,000 adults have not been vaccinated at all. 

OpenSafely – first dose vaccinations up to 22 June 2022 (40% of GP practices) of adults with learning disabilities

	Vaccinated	Not vaccinated	Total eligible	Percentage vaccinated (at least one dose)	Extrapolated number vaccinated (at least one dose)	Extrapolated number not vaccinated
80+	518	21	539	96.1%	1,295	53
70-79	2,996	133	3,129	95.7%	7,490	333
65-69	2,485	175	2,660	93.4%	6,213	438
65+ in care homes				96.7% (overall)	6,344*	216
16 -69 shielding	25,319	1,512	26,831	94.4%	63,298	3,780
16-64 (not shielding)	77,427	10,367	87,794	88.2%	193,568	25,918
Estimated totals					278,208	30,738

* Total number of older people with learning disabilities in residential care and nursing homes in England taken from NHS Digital SALT social care statistics 2020/21 – overall COVID-19 vaccination rate applied to these figures for extrapolated numbers of people vaccinated and not vaccinated

 There is also information published weekly by NHS England from the National Immunisation Management System, based on GP register data across England. They report on the number of 'at risk' people or carers aged 16-64 identified as a person with learning disabilities on GP registers who have had COVID-19 vaccinations. Up to 31st July 2022, this dataset reports that 239,727 people (88.9%) had received at least one COVID-19 vaccine dose and 30,059 people had not had a COVID-19 vaccine - the figures don't exactly match up but they are in the same ballpark as the estimates in the table. This dataset also reports big variations in COVID vaccine coverage for 'at risk' adults with learning disabilities aged 16-64 across English regions - more people in the South West (92.2%) and the South East (91.4%) had received at least one vaccine dose compared to people in the North West (87.5%) and London (82.2%).

So, while overall the vast majority of adults with learning disabilities in England have had at least one dose of the COVID-19 vaccine, over 30,000 adults have not had a vaccine dose and there are big variations according to age, ethnicity, and where the person lives in England. One dose of the COVID-19 vaccine can be the result of a one-off effort - three doses require a functioning vaccine system on a more sustained basis. Using the same sources of data and formats as the information above for at least one dose, how many adults with learning disabilities have had three doses of the COVID-19 vaccine?

The graph below, from OpenSafely data, shows that for people aged 65+, 83% to 88% of people with learning disabilities had had three COVID-19 vaccine doses, typically 4%-5% lower than people without learning disabilities. 'Shielding' (probably equivalent to 'Clinically Extremely Vulnerable' people) people with learning disabilities aged 16-69 had been vaccinated with three doses at a higher rate than people without learning disabilities (82.8% vs 76.9%).

Amongst non-shielding adults with learning disabilities aged 16-64 (see the graph below) the inequalities in three dose vaccine coverage by ethnicity, age and to a certain extent sex are even more stark. Only 40.1% of Black people, compared to 72.5% of White people, had received three vaccine doses. Only 29.1% of people aged 16-17 had received three vaccine doses, reflecting the cumulative consequences of earlier JCVI decisions not to vaccinate children and young people. As people move up through the age bands, the consequences of lower vaccination rates among younger people early on is resulting in the overall percentage of adults with learning disabilities getting three vaccine doses going down, if anything, rather than going up.

Using the same guessing methods as before, the table below shows that I estimate over 220,000 adults with learning disabilities in England have had three vaccine doses, and over 80,000 adults with learning disabilities have not had three COVID vaccine doses.

OpenSafely – third dose vaccinations up to 22 June 2022 (40% of GP practices) of adults with learning disabilities

	Vaccinated (three doses)	Not vaccinated with three doses	Total eligible	Percentage vaccinated (three doses)	Extrapolated number vaccinated (three doses)	Extrapolated number not vaccinated with three doses
80+	476	63	539	88.3%	1,190	158
70-79	2,716	413	3,129	86.8%	6,790	1,033
65-69	2,219	441	2,660	83.4%	5,548	1,103
65+ in care homes				89.3% (overall)	5,858*	702
16 -69 shielding	22,218	4,613	26,831	82.8%	55,545	11,533
16-64 (not shielding)	61,096	26,698	87,794	69.6%	152,740	66,745
Estimated totals					227,671	81,274

* Total number of older people with learning disabilities in residential care and nursing homes in England taken from NHS Digital SALT social care statistics 2020/21 – overall COVID-19 vaccination rate applied to these figures for extrapolated numbers of people vaccinated and not vaccinated

The national NHS England/NIMS data I mentioned earlier reports that 194,028 'at risk' adults with learning disabilities aged 16-64 have had three COVID vaccine doses, and 75,758 people have not had three vaccine doses. Again, there are big regional variations - the South West (79.0%) and South East (77.6%) again report much higher rates than the North West (68.7%) and London (61.5%).

So, for me at least, there is compelling case for a sustained vaccination effort for people with learning disabilities across England, both to address existing inequalities in first dose vaccine coverage and to get as many people as possible to a point where they have the maximum vaccine protection possible for them. What are the prospects of this happening? After all, there have been sustained vaccination efforts earlier in the pandemic.

The first major issue for me is that the general infrastructure for delivering COVID-19 vaccines has been largely dismantled in England. This graph below, one of many from the excellent gov.uk COVID-19 vaccination website, shows how many 1st, 2nd and 3rd doses have been delivered, day by day, up to 16th August 2022. The different waves of 1st, 2nd and 3rd doses delivered can be clearly seen, but from March 2022 onwards there has been relatively little COVID vaccine activity. With both community and hospital-based health services overwhelmed, waiting times growing, and COVID-19 vaccination centres dismantled, it is unclear where the capacity for another major vaccination effort will come from. This applies doubly to the learning disability health service professionals who provided specialist support for people with learning disabilities to get their COVID-19 vaccines - these relatively scarce professionals were withdrawn from ongoing and much-needed health support for people with learning disabilities whose health needs have increased in their absence. Social care support staff shortages are also going to have an impact.

The second major issue for me is the attitude and stance of the JCVI itself, which throughout the COVID-19 pandemic has adopted a narrowly clinical stance and has shown a resistance to publicly change its guidance. To my mind, this has resulted in precisely the ambiguous mess that we are in now when it comes to prioritising people with learning disabilities for an autumn COVID-19 booster.

In the first fight over vaccine prioritisation in early 2021, the JCVI adopted a stance that, based on clinical evidence, only people with Down syndrome (and, at a pinch, people with severe and profound learning disabilities) should be prioritised for the COVID-19 vaccine. [There is a critique to be made of the evidence they used to drawn this conclusion, but I will spare you that now.] When it was pointed out to them that there was no practical way of reliably identifying these specific groups of people within GP registers, they came up with this formulation in their letter of 23rd February 2021 to the Secretary of State for Health (any errors are in the original):

"On review, JCVI agreed with its earlier conclusions from the PHE and LedeR reports that mortality among individuals with learning disability most likely reflected those with more severe forms of disability, including Downs’ syndrome, those at higher risk of exposure because they were in residential or nursing care, those in older age groups, and those more likely to have other underlying health conditions which place them at higher risk from COVID-19. It is expected that individuals with more severe learning disabilities are more likely to be on the GP Learning Disability Register, as suggested in the PHE report. However, because of concerns about the coding of learning disability on GP systems, particularly with regard to the coding of severity of any disability, JCVI asked the OpenSAFELY team to look at mortality and morbidity in those with various code sets for learning disabilities on GP systems and to include data from wave 2 of the pandemic. The updated analysis confirmed high mortality and morbidity in those on the GP register, even after controlling for place of residence.

JCVI therefore agrees with the current operational plan to use the PRIMIS specification, which identifies all of those on the GP Learning Disability Register plus those with codes for other related conditions, including cerebral palsy, to be invited for vaccination in priority group 6 (unless already in priority group 4, such as those with Down’s syndrome). The committee also recognised that some severely affected individuals would not be coded at all on GP systems, and supported the planned approach to work with local authorities to identify those in residential and nursing care, and those who required support, for example as part of assisted living in the community, and those in shared accommodation with multiple occupancy, to ensure this population could be offered vaccination."

Or, as succinctly summarised in the response letter from the Minister:

"Thank you for your letter on 23 February 2021 from the Joint Committee on Vaccination and Immunisation (JCVI) on COVID-19 vaccination in cohort 6 of people with learning disabilities. I note that your clinical view remains that those at greatest risk are people with severe and profound learning disabilities. It is very helpful, however, to have your support for a practical operational approach, proposing to invite everyone on the GP Learning Disability Register.

I am grateful for the further considerations of the JCVI. In line with your letter, I have asked the NHS to ensure that everyone on the Learning Disability Register is invited for vaccination as part of cohort 6."

A classic 'Nothing has changed!' moment. The JCVI stuck to their line that they were only recommending vaccines for people with Down syndrome and people with severe and profound learning disabilities, but with a begrudging and offhand statement that this kind of means in practice every adult with learning disabilities on the GP register.

And this face-saving fudge is having real consequences for people with learning disabilities now. The Green Book (yes, it really is called that) contains the last word, in excruciating detail, on what health services should do about about all sorts of vaccinations, including COVID-19 vaccinations (Chapter 14a, as I'm sure you needed to know - you can read it online). If you're a health professional who really wants to delve into the detail, this is where you look. So, who are the adults in clinical and other risk groups when it comes to COVID-19 vaccination? Table 3 defines and describes the set of risk groups, including, under the delightful title of 'Chronic neurological disease' (my emphasis in bold): 

"Stroke, transient ischaemic attack (TIA). Conditions in which respiratory function may be compromised due to neurological or neuromuscular disease (e.g. polio syndrome sufferers). This group also includes individuals with cerebral palsy, severe or profound and multiple learning disabilities (PMLD) including all those on the learning disability register, Down’s syndrome, multiple sclerosis, epilepsy, dementia, Parkinson’s disease, motor neurone disease and related or similar conditions; or hereditary and degenerative disease of the nervous system or muscles; or severe neurological disability."

To me, this is dangerously ambiguous wording. For health professionals not looking to include all adults with learning disabilities in an autumn booster COVID vaccination programme, this can be used as a justification. And the resistance to including all adults with learning disabilities in an autumn booster programme (with the infrastructure and means to make this a reality) is doubly depressing.Time and time again throughout the COVID-19 pandemic (and before, of course) institutional discrimination has been the default setting in health services when it comes to people with learning disabilities. Although there is always more to do, the first COVID-19 vaccine rollout showed what health services could achieve if people with learning disabilities were properly part of a major life-saving initiative. Yet this wasn't a ratchet, setting a new benchmark for how health services (even if only in terms of vaccination services) would routinely view people with learning disabilities. The rock that was pushed up the hill to prioritise people with learning disabilities in the first place has rolled right back to the bottom. We go again.