Autistic people and people with learning disabilities in inpatient units: written evidence to the Health and Social Care Select Committee

 This blogpost is a copy of written evidence I was asked to provide for the Commons Health and Social Care Committee inquiry into the treatment of autistic people and people with learning disabilities. It goes through some of the statistics about people in inpatient units, in my best pompous data-nerd style. 

10 years on from the Panorama programme about people being horrendously abused in Winterbourne View, and this is where we are?

People with learning disabilities and autistic people in inpatient services in England

Written evidence to the Commons Health and Social Care Select Committee: Inquiry into the treatment of autistic people and people with learning disabilities

 

May 2021

Professor Chris Hatton, Manchester Metropolitan University

 

This written evidence provides a brief overview of statistical information regarding autistic people and people with learning disabilities in inpatient services, focusing on:

1)      The number of people in inpatient services

2)      Admissions, discharges and deaths

3)      Transfer planning

4)      Restrictive interventions

5)      Length of stay in inpatient services

6)      Some observations on data

 

The number of people in inpatient services

There are two sources of monthly information on the number of people with learning disabilities and autistic people in inpatient services published by NHS Digital[1].

The first is the Assuring Transformation (AT) dataset– this information is collected retrospectively by health service commissioners in England and has been collated and reported monthly by NHS Digital from February 2015. DHSC and NHS England/Improvement communications and written policy concerning Transforming Care and Building The Right Support use statistics drawn from this dataset.

The second uses information from an extension of the Mental Health Services Data Set (the MHSDS) to include people with learning disabilities and autistic people in mental health inpatient services. The MHSDS records monthly data from service providers flagging people with learning disabilities and autistic people in mental health inpatient services (including both mainstream mental health and specialist inpatient services), reported from February 2018 onwards by NHS Digital.

There are some major differences in scope between the AT and MHSDS datasets, the most substantial being that the MHSDS reports autistic people and people with learning disabilities in mainstream mental health inpatient services, often for short durations, which the AT dataset tends to exclude (possibly as a consequence of the MHSDS being reported by providers and AT being reported by commissioners). The AT dataset also reports more detailed information on aspects of service processes, while only the MHSDS currently reports information on restrictive interventions (various types of physical, mechanical and chemical restraint, seclusion and segregation).

 

Chart 1 below shows the number of people with learning disabilities and autistic people in inpatient services over time, according to the AT and MHSDS datasets. There are four issues to consider when looking at this chart

1)      AT numbers are retrospectively reported by commissioners, with the most recently reported numbers (2,035 people in March 2021) added to over time as commissioners update their returns. This typically adds at least 100 people to the initially reported figures. Not taking this into account will inflate the scale of any reduction in inpatient numbers.

2)      Figures for 2020 and 2021 must be considered in the light of COVID-19, where admissions (particularly for children and young people) sharply decreased during the first peak of COVID-19 in spring 2020, and it is unclear what will happen once restrictions end. It is difficult to interpret recent figures as representing long-term trends in Transforming Care/Building The Right Support policy versus inpatient service responses to COVID-19.

3)      The MHSDS, which includes autistic people and people with learning disabilities in generic mental health inpatient services, reports much higher numbers of people (typically around 1,000 more people) at the end of each month than the AT dataset. If ‘specialist’ inpatient units are reducing their numbers, an important part of the Building The Right Support programme should include what is happening to autistic people and people with learning disabilities in generic mental health inpatient services.

4)      These are end of month figures, which under-estimate the number of autistic people and people with learning disabilities using typically generic mental health inpatient services for very short periods of time. For example, MHSDS data for January 2021 report 3,205 people in inpatient services at the end of the month, but 4,215 people in inpatient services at some point in the month. Again, the Building The Right Support programme should be interested in people using generic mental health inpatient services for very short periods of time, including for the purposes of ‘respite’ (325 people in January 2021).

 

Chart 1: Number of people with learning disabilities and autistic people in inpatient services at the end of the month (AT and MHSDS)

Admissions to inpatient services

Data on admissions to inpatient services are available for a longer time period for the AT dataset than the MHSDS, so these are the data reported on in this section.

Chart 2 below shows the number of people with learning disabilities and autistic people admitted to inpatient services over five years, aggregated from monthly data into annual blocks. This chart breaks down admissions into people transferred from another hospital, people re-admitted to an inpatient service within a year of leaving one, and people admitted to an inpatient service for the first time (or at least more than a year since leaving one).

From 2015-16 to 2018-19 the chart shows an increasing number of admissions to inpatient services, with the decrease in 2019-20 likely to be due to restrictions on admissions during COVID-19.

Across the five years of data, 25% of admissions have been transfers from other hospitals, 16% have been re-admissions within a year (5% of all admissions are re-admissions within 30 days of leaving an inpatient service), and 60% have been first admissions.

Chart 2: Number of admissions of autistic people and people with learning disabilities to inpatient services annually, from Oct 2015 to Sept 2020 (AT dataset)

 

In terms of where people were being admitted to inpatient units from, AT data available across four years (Oct 2016 – Sept 2020) shows that almost half of admissions (46%) were from the person’s usual place of residence, 29% of admissions were from acute beds in hospitals (typically acute generic mental health beds), 2% were from secure forensic locations, 14% were from other types of hospital location, 4% were from penal establishments, and 4% were from residential care.

This reinforces the importance of understanding what is happening to people with learning disabilities and autistic people in generic mental health inpatient services, particularly the possibility of people being repeatedly in and out of ‘revolving door’ inpatient services in the absence of proper support.

 

‘Discharges’ from inpatient services

Data on discharges from inpatient services are available for a longer time period for the AT dataset than the MHSDS, so these are the data reported on in this section.

Chart 3 below shows the number of discharges of people with learning disabilities and autistic people from inpatient services over five years, aggregated from monthly data into annual blocks. This chart breaks down discharges into the destinations that people were immediately discharged to, including transfers to other hospital locations, discharges to community locations, and ‘other’ discharges.

Deaths of autistic people and people with learning disabilities are treated as a category of ‘other’ ‘discharge’, which I discuss in the next section.

Chart 3 below shows that over the five years Oct 2015 – Sept 2020 there have been a total of 10,830 ‘discharges’. Of these discharges:

·       65% have been to various community locations, including family homes with support (22% of all discharges), supported housing (20%), residential care (17%) and independent living (4%);

·       21% have been transfers to other inpatient hospital locations, most commonly low secure hospitals (6% of all ‘discharges’) and ‘other’ types of hospital (5%), but also medium secure units, acute transfer to a learning disability unit, acute transfer to a mental health unit, forensic rehab, and complex/continuing care/rehab (each 2% of all discharges);

·       A further 14% of discharges were to ‘other’ unspecified locations, a substantial number of discharges which requires further specification by NHS England/Improvement and NHS Digital.

 

In terms of trends over time, the number of discharges increased from 2015-16 to 2017-18, but has decreased since.

Chart 3: Number of discharges of autistic people and people with learning disabilities from inpatient services annually, from Oct 2015 to Sept 2020 (AT dataset)

 

Deaths of autistic people and people with learning disabilities in inpatient services

In publicly available monthly data in both the AT and MHSDS datasets, deaths of people in inpatient services are recorded as a category of ‘other discharge’. Because of standard NHS Digital rounding rules, all the data in the AT and MHSDS datasets are rounded to the nearest five, or suppressed if the number is less than five. With the exception of April 2020 during the first peak of the COVID-19 pandemic, where AT recorded 5 deaths and MHSDS recorded 10 deaths, no individual month in either dataset has recorded any figures on the number of people who have died in inpatient units in each month. If any month with suppressed data can represent 0-4 deaths, then over the course of a year this could be anything from 0-48 people’s deaths not represented in the data.

It is vital for raw data to be aggregated by NHS Digital over longer periods of time (6-monthly or annually) to enable better scrutiny of the number of people dying in inpatient services, including during the COVID-19 pandemic.

 

Plans for transferring people out of inpatient services

The AT dataset includes a number of indicators relating to transferring people with learning disabilities and autistic people out of inpatient services.

Chart 4 below shows the percentage of people currently within inpatient units with various types of care plan. In Sept 2020 27% of people in inpatient units did not need inpatient care according to their care plan (down from 34% in Sept 2015), including 5% of all people in inpatient units with a delayed transfer of care. 32% of people in Sept 2020 (up from 24% in Sept 2015) were recorded in their care plan as not dischargeable, and a further 42% were recorded in their care plan as needing inpatient care but with an active treatment plan.

Chart 4: Percentage of people in inpatient units with different types of care plan (AT dataset)

 

In Sept 2020 just under half (49%) of all people in inpatient units had a transfer planned (up from 30% in Sept 2016), and for 9% of all people in inpatient units their planned transfer was overdue (compared to 8% in Sept 2016).

In Sept 2020, among those with a planned transfer date 56% of councils were aware of this planned transfer date (down from 68% in Sept 2016).

There are also indications that fewer transfer plans are being agreed with important others. Chart 5 below shows the percentage of transfer plans that have been agreed with other people and agencies. Although there has been an improvement from Sept 2019 to Sept 2020 this has not offset sharp decreases in previous years. In Sept 2020:

·       41% of transfer plans (compared to 64% in Sept 2016) were agreed with the person

·       36% (vs 60% in Sept 2016) were agreed with the person’s family/carer

·       40% (vs 65% in Sept 2016) were agreed with the person’s advocate

·       48% (vs 82% in Sept 2016) were agreed with the provider clinical team

·       44% (vs 67% in Sept 2016) were agreed with the local community support team

·       47% (vs 80% in Sept 2016) were agreed with commissioners

Chart 5: Percentage of transfer plans agreed with other people and agencies (AT dataset)

Restrictive interventions

Statistics on restrictive interventions (including various types of physical, chemical and mechanical restraint, as well as segregation and seclusion) used on people with learning disabilities and autistic people in inpatient units are provided monthly in the MHSDS dataset. How inpatient services responded to COVID-19 during this time period is an important contextual factor when interpreting these statistics.

Chart 6 below shows the total number of restrictive interventions, and the total number of people subject to restrictive interventions, reported in the MHSDS from January 2020 to January 2021. Although there are apparent large fluctuations from month to month, the figures from January 2021 are similar to those for January 2020, with 420 people during the month of January 2021 subject to at least one restrictive intervention and a total of 3,970 restrictive interventions reported.

Chart 6: Total number of restrictive interventions and number of people in inpatient units subject to restrictive interventions (Jan 2020 – Jan 2021): MHSDS

 

Chart 7 below takes into the account the number of people in inpatient units at the end of each month, showing that in January 2021 13.1% of all autistic people and people with learning disabilities in inpatient units were subject to some form of restrictive intervention in the month (up from 11.5% in January 2020). This chart also shows that in January 2021 each person experiencing restrictive interventions was being subjected to an average 9.5 restrictive interventions per person (up from 8.8 in January 2020), almost one every three days. Again there are large fluctuations recorded from month to month.

 Chart 7: Percentage of people in inpatient units subject to restrictive interventions and average number of restrictive interventions per person subject to restrictive interventions at least once in the month (Jan 2020 – Jan 2021): MHSDS

 

In terms of specific types of restrictive intervention, in January 2021 a very wide range of restrictive interventions were being reported in the MHSDS as being used in inpatient units, including:

·       Chemical restraints, most commonly oral medications (used 405 times on 80 people) and rapid tranquilising injections (used 280 times on 65 people)

·       Mechanical restraints (used 40 times on 20 people)

·       Seclusion (used 340 times on 165 people)

·       Segregation (used 15 times on 10 people)

·       Eight different types of physical restraint, most commonly

o   Supine restraint (used 620 times on 145 people)

o   Seated restraint (used 540 times on 120 people)

o   Standing restraint (used 480 times on 160 people)

o   Restrictive escort (used 335 times on 85 people)

o   Prone restraint (used 255 times on 85 people)

o   ‘Other’ types of physical restraint (used 615 times on 120 people)

 

To understand the monthly fluctuations in the figures for restrictive interventions a little better, Chart 8 below shows the percentage of people in inpatient services subject to restrictive interventions broken down by NHS vs independent sector inpatient services. Chart 8 shows that figures for NHS inpatient services show some fluctuations over time but a general increasing trend over time.

Figures for independent sector services show extreme fluctuations up to August 2020, followed by consistent low levels of restrictive interventions since. This can be accounted for by variations in the completeness of reporting within the MHSDS of restrictive intervention data from independent sector services. In January 2021, only one independent sector organisation out of 17 in the MHSDS (St Andrews) recorded restrictive interventions at a level (5 or more restrictive interventions due to the data rounding rules discussed earlier) recorded at all in the MHSDS. For example Cygnet (365 people with learning disabilities and autistic people in inpatient units according to the MHSDS) and Elysium (480 people) both effectively recorded no restrictive interventions in January 2021.

Chart 8: Percentage of people in inpatient units subject to restrictive interventions by provider type (Jan 2020 – Jan 2021): MHSDS

 Length of stay in inpatient services

The final chart below, Chart 9, shows AT data on the average length of stay of autistic people and people with learning disabilities in inpatient services over time. Chart 9 shows that the average length of stay for people in their current inpatient unit was 2.7 years in September 2020, barely changed from 2.9 years in September 2016. The average continuous length of stay of people in inpatient units (including transfers between inpatient units) was 5.7 years in September 2020, again little changed from 5.4 years in September 2016.

Chart 9: Average length of stay for people in inpatient units (AT dataset)

Some observations on data

This written evidence presents an overview of selected statistical indicators concerning autistic people and people with learning disabilities in inpatient services in England. I hope this will be useful to the Committee in its Inquiry. As will be obvious to the Committee, issues involved in the interpretation of the available data can be complex. I would like to offer a small number of observations on these data which are urgent if policies such as Transforming Care and Building The Right Support are to be subject to robust evaluation and scrutiny. 

1)      The retrospective reporting of data for the AT dataset, and how inpatient services have been operating throughout the COVID-19 pandemic, mean that assertions of continuing reductions in the number of people in inpatient services may have been overstated.

2)      The continuing lack of completeness in reporting to the MHSDS, particularly by independent sector organisations recording restrictive interventions, is an urgent concern as restrictive intervention statistics will be under-estimates which make it almost impossible to evaluate policy progress.

3)      The MHSDS records much larger numbers of people in inpatient services, across a much wider range of inpatient services, than the AT dataset typically used by NHS England/Improvement in reporting progress. The lack of reconciliation of these two datasets is a longstanding issue, as noted by the National Audit Office in 2017[2]:

“NHS England does not consider the current data it uses to monitor the programme [the Assuring Transformation dataset] to be a long-term solution and is planning for it to be incorporated into a newer, data set which monitors people using mental health services. This newer data set began reporting the number of people in mental health hospitals with a learning disability in May 2016. It reports a much higher number of people compared with the programme data set (3,805 people in November 2016 compared with 2,540 people in the programme data set at the same time). NHS England considers this newer data set to be less robust, less mature and needing development and so does not use it to monitor the programme. Our 2015 report highlighted the unsatisfactory situation of having two different unreconciled data sets, where one data set reported that there were 2,577 people in mental health hospitals whereas another data set reported 3,250. We are disappointed to find this problem again.”

4)      For important data, particularly the deaths of autistic people and people with learning disabilities in inpatient services, raw data from the AT and MHSDS datasets should be aggregated over longer periods of time to enable the number of people with learning disabilities who have died to become visible.

5)      The data provided publicly are a series of snapshots – supplementing these with data that track people over time would be really helpful in understanding issues such as the extent of ‘revolving door’ usage of inpatient services.

6)      The scale and detail of data on people in inpatient services is not matched by data on the community support recommended in Building The Right Support, such as the number and composition of community teams and the number of people using them. These data are vital if the positive ambitions of Building The Right Support are to be subject to evaluation and scrutiny.

7)      Routinely recorded statistics do not currently capture anything about the experiences of people in inpatient services or of those close to them. There are challenges in collecting this type of information routinely and reliably and in sharing summary information publicly, but again it is essential to understanding the progress of Transforming Care/Building The Right Support.

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[1] https://digital.nhs.uk/data-and-information/publications/statistical/learning-disability-services-statistics

[2] National Audit Office. Local support for people with a learning disability. London: National Audit Office. Published 3^rd March 2017. Available online at https://www.nao.org.uk/wp-content/uploads/2017/03/Local-support-for-people-with-a-learning-disability.pdf

 

'Client contributions' to social care - adults with learning disabilities

With recent campaigning about drastically increasing charges for people drawing on adult social care, I thought I'd have a quick look at what the NHS Digital statistics say about the scale of 'client contributions' to adult social care in England. I've only looked at figures for adults labelled as having a primary care need of learning disabilities (the same analyses could be done for other groups of people), and I've looked at figures from 2016/17 to 2019/20. This is obviously before COVID-19 really hit, but it might give a bit of a picture of how things were going before the pandemic.

I last did a blogpost about this 6 years ago (the way the statistics are collected has changed since then, so the figures aren't directly comparable), and this blogpost on social care statistics and adults with learning disabilities might be useful for context.

Two graphs.

This graph below shows the amount that local authorities received in 'client contributions' to social care services for adults with learning disabilities aged 18-64. A few things:

• In 2019/20, client contributions totalled £369 million for adults with learning disabilities aged 18-64, 6.8% of the total gross expenditure of local authorities on social care for this group. This equates to an average of £2,265 per year per person getting long term social care.
• From 2016/17 to 2019/20, the total amount of client contributions has increased by 6.4% per year (Compound Annual Growth Rate), compared to 3.8% per year for local authority spending (minus client contributions). It's important to say that these figures aren't adjusted for inflation.
• The greatest client contributions were in the categories of Fairer Charging Income (£137.2 million) and residential care (£123.8 million). 
• While client contributions to residential care are reducing over time (in line with residential care services reducing over time), client contributions to Fairer Charging (10.8% per year) and many other types of support have increased rapidly from 2016/17 to 2019/20.

The second graph below is in the same format, and shows the amount that local authorities received in 'client contributions' to social care services for adults with learning disabilities aged 65+:

• In 2019/20, client contributions totalled £78.4 million for adults with learning disabilities aged 65+, 11.1% of the total gross expenditure of local authorities on social care for this group. This equates to an average of £3,703 per year per person getting long term social care.
• From 2016/17 to 2019/20, the total amount of client contributions has increased by 6.1% per year (Compound Annual Growth Rate), compared to 7.2% per year for local authority spending (minus client contributions). Again, it's important to say that these figures aren't adjusted for inflation.
• The greatest client contributions were in the categories of residential care (£35.4 million) and Fairer Charging Income (£25 million). 
• While client contributions to residential care are fluctuating over time, client contributions to Fairer Charging (15.8% per year) and many other types of support have increased rapidly from 2016/17 to 2019/20.

Local authorities have generally tried to preserve spending on social care services for adults with learning disabilities up to the start of the pandemic, although this is not keeping pace with the number of adults with learning disabilities who could do with some social care support. Austerity for local authorities is also, of course, austerity in the lives of many people with learning disabilities and their families and friends, and these statistics show that people and families are being required to make rapidly increasing contributions that many can ill afford. And of course, these statistics only record formal 'client contributions', when we know that many families are making substantial contributions that would not show up in these statistics.

Finally, all these statistics are before the impact of the COVID-19 pandemic, when we know that people with learning disabilities have faced huge cuts to their social care support and there is real anxiety about rapidly increasing charges. Are we really building back better?

COVID-19 vaccination and people with learning disabilities in England - how is it going?

For a couple of months now, there has been official recognition of people with learning disabilities as a priority for the COVID-19 vaccine across all parts of the UK. But as we know from sometimes bitter experience, "between the idea and the reality, between the motion and the act, falls the Shadow" (thanks for that TS Eliot, don't sue me!). What do we know about how many people with learning disabilities have actually received the COVID-19 vaccine? Are there inequities in vaccine coverage between people with learning disabilities and other people, and are there the kind of inequities in vaccine coverage within the population of people with learning disabilities (for example by ethnicity) that we are seeing for people generally?

This blogpost will quickly summarise some information we have for England, produced with remarkable speed by the OpenSafely consortium based on the GP records of about 40% of the population of England. The OpenSafely consortium produces weekly updates of vaccine coverage, including in many cases disaggregated information about people with learning disabilities compared to other people (based on GP registration as a person with learning disabilities and/or on GP recording of a fairly limited set of 'conditions'). The weekly report I will refer to here was produced on 12th April 2021, and includes information on vaccinations up to and including 7th April 2021. I have drawn a couple of graphs trying to summarise the wealth of information they provide to focus on people with learning disabilities.

The first graph below shows COVID-19 vaccination coverage for a range of groups of people: people shielding aged 16-69; people aged 65-69 (not shielding or living a care home); people aged 70-79 (not living in care home); and people aged 80+ (not living in a care home). Probably due to small numbers, OpenSafely do not disaggregate their information on vaccine coverage for older people in care homes by learning disability. In each group, vaccine coverage is split by people with learning disabilities (dark purple bars for vaccines up to the last 7 days, with red tips for vaccines in the last 7 days) and other people (lilac bars with light red tips). 

A few things that I think this graph shows. First, for all groups of older people with learning disabilities aged 65+, COVID-19 vaccine coverage levels are around 90% or above, only about 2-3% lower than the COVID-19 vaccine coverage levels for other people in these age groups. Second, for people shielding aged 16-19, COVID-19 vaccine coverage for people with learning disabilities is just about at 90% after a short period of time, with vaccine coverage for people with learning disabilities slightly higher (by 3.5%) than for other people shielding. Third, very few new people in all these groups are being vaccinated, so specific efforts need to be made to ensure that vaccine coverage is as complete as possible, including reasonable adjustments to the vaccination process.

The graph below is taken directly from the OpenSafely weekly report, and shows cumulative vaccine coverage over time for people with learning disabilities (organe line) and other people (blue line) aged 80+. This is a fairly typical pattern for COVID-19 vaccines over time - at first vaccine coverage for people with learning disabilities lags behind, but then catches up as vaccine coverage reaches saturation for people generally. 

Overall this is a highly encouraging picture, with inequities in COVID-19 vaccine coverage between people with and without learning disabilities (after some worrying lag times) appearing to be relatively small or even reversed.

The second question I asked at the start of this post is about inequities in vaccine coverage within the group of people with learning disabilities. The graph below summarises OpenSafely information on COVID-19 vaccine coverage within the group of adults with learning disabilities aged 16-64 who are not officially shielding (although we know substantial numbers of adults with learning disabilities are likely to have been de facto shielding even if they don't have an official shielding letter). 

Overall, almost 80% of people with learning disabilities in this group have had their first dose of the COVID-19 vaccine (and 4.4% of people have received their second dose). Within this overall encouraging news there are, however, the kinds of substantial inequities in COVID-19 vaccine coverage that we are seeing generally. Men are slightly less likely than women to have had the COVID-19 vaccine, but there are bigger vaccine coverage gaps amongst younger people and particularly amongst people from a range of minority ethnic communities. The red tips of the purple bars (showing vaccine coverage in the last 7 days) suggests that these inequities aren't being closed.

Overall, the picture of COVID-19 vaccine coverage is encouraging for people with learning disabilities, with high rates of first dose vaccine coverage getting towards 90% of people with learning disabilities which is not far off the general population. But there are also substantial inequities in COVID-19 vaccine coverage within the population of people with learning disabilities, particularly amongst some groups of people who may be at greater risk of serious consequences from COVID-19. Alongside the priority to ensure that people with learning disabilities take up their second dose, urgent attention needs to be paid to redressing these inequities. Are general efforts to increase vaccine uptake among under-served groups inclusive of people with learning disabilities, and are vaccination programmes focused on people with learning disabilities effectively reaching under-served groups of people with learning disabilities?

COVID-19 vaccines and people with learning disabilities - what is actually happening?

There has been welcome increased media attention on COVID-19 vaccination and people with learning disabilities in England and across the UK, and how people with learning disabilities should as a whole group be a priority for the COVID-19 vaccine. I have previously tried to make the case for people with learning disabilities being a priority for COVID-19 vaccination in a couple of blogposts here and here, so I won't repeat these arguments here.

In this blogpost I want to look at the early signs of what is actually happening with the COVID-19 vaccination of people with learning disabilities, and what the practical prospects are of people with learning disabilities being vaccinated equitably.

First, a quick reminder. The Joint Committee on Vaccination and Immunisation (JCVI) advises the government on who has priority for COVID-19 vaccination, and the government is following this advice in its vaccination programme. The prioritisation list determined so far is below.

1. residents in a care home for older adults and their carers
2. all those 80 years of age and over and frontline health and social care workers
3. all those 75 years of age and over
4. all those 70 years of age and over and clinically extremely vulnerable individuals^{[footnote 1]}
5. all those 65 years of age and over
6. all individuals aged 16 years^{[footnote 2]} to 64 years with underlying health conditions which put them at higher risk of serious disease and mortality^{[footnote 3]}
7. all those 60 years of age and over
8. all those 55 years of age and over
9. all those 50 years of age and over

This is heavily age-based (mirroring information from the total population on the number of people who have dies from COVID-19), but gives relatively little consideration to groups of people within the population who are at higher risk of dying from COVID-19, such as people from minority ethnic groups and (as a comprehensive and grim analysis of COVID-19 deaths from the Office for National Statistics further confirmed this week) people with learning disabilities.

Existing crushing health inequalities pre-COVID already mean that people with learning disabilities were dying on average around 20 years younger than other people, meaning bluntly that relatively few people with learning disabilities make it into the older age groups that are a priority for the COVID-19 vaccine. Other analyses (for example this recent comprehensive analysis of COVID-19 infections and deaths among people with learning disabilities in Scotland) have repeatedly shown that the risk of death from COVID-19 is much higher at younger ages for people with learning disabilities compared to people without learning disabilities, with the most common age of death between the ages of 55 and 64.

Adults with learning disabilities under the age of 65 can become a higher priority for a COVID-19 vaccination in two ways. 

First, if a person is judged to be Clinically Extremely Vulnerable (determined by a list of particular medical conditions, but doctors can use their clinical judgement) then they should be in priority group 4 (with people aged 70 or over). People with Down syndrome are all included in this group, as there is some evidence of higher risks in this group of people, and other people with learning disabilities with one of the medical conditions listed would also be included.

Second, if a person has an 'underlying health condition which put them at higher risk of serious disease and mortality' then they should be in priority group 6, which is after everyone aged 65 or over but before people aged 60-64. Again there is a list of health conditions, but doctors can use their clinical judgement to decide who is in this priority group. People with learning disabilities (particularly at ages under 65) are more likely to have one or more of the underlying health conditions listed, but we don't how how people overall would be included on these criteria. An important 'underlying health condition' added to its list by the JCVI is people with 'severe and profound learning disabilities'. 

Many people have rightly pointed out that this COVID-19 vaccination prioritisation strategy will miss out large numbers of people with learning disabilities aged under 65 (the issue of children is also urgent and not really considered), who are likely to be at higher risk of serious consequences of COVID-19. Many people have also pointed out multiple potential practical problems with implementing the vaccination priorities that exist, to the likely detriment of people with learning disabilities.

Before going through some of these practical problems, let's look at some early evidence of what's happening with COVID-19 vaccinations in the top age-related priority groups, produced with amazing speed by the OpenSafely collaboration. They are producing a weekly report of the scale of COVID-19 vaccinations in different age groups as the COVID-19 vaccination cranks up, based on substantial numbers of people in primary care records. This allows them to break down COVID-19 vaccine coverage among different groups over time, including people with learning disabilities (intellectual disability in the parlance the group uses).

So, among people aged 80+ who are not living in care homes, by the 4th February 86.5% of people overall had received the COVID-19 vaccine. There is a substantial vaccination gap, however, between people with learning disabilities (where 75.3% of people identified as such on GP records had received the COVID-19 vaccine) and other people (86.6%). The graph below shows the cumulative vaccination rate for people with and without learning disabilities overtime - the vaccination gap has been fairly consistent from the start, and vaccination rates are slowing down for both groups.

The same information is available for people aged 70-79 not in care homes (which started a little later and has more people to vaccinate). By 4th February, 59.7% of people aged 70-79 overall had received the COVID-19 vaccine. The vaccination gap for people with learning disabilities vs other people is even bigger than for people aged 80+ (46.2% for people with learning disabilities versus 59.8% for other people). The graph below shows that this has only recently opened and has widened very quickly.

As far as I know, this is by far the best (the only?) information we have on how people with learning disabilities are actually faring when it comes to getting a COVID-19 vaccine. These vaccination gaps are particularly worrying to me because they are happening in age groups where people are obviously registered with their GP and identified as a person with learning disabilities (otherwise they wouldn't be in the dataset), where there aren't that many people with learning disabilities to vaccinate, and where a comprehensive population-based COVID-19 vaccination programme is supposed to be happening.

What is going to happen with people with learning disabilities at younger ages, where eligibility decisions need to be made in terms of prioritising people with learning disabilities for COVID-19 vaccinations (or not)? 

A major issue here is that GP's health records are unlikely to reliably identify people with the 'conditions' that would qualify them for inclusion in the CEV or underlying health conditions list that confer higher priority for the COVID-19 vaccine. From 2018 onwards, there has been a major programme of reconfiguring how people are recorded in GP health records, from 'Read' codes to SNOMED codes (see this guidance document relating to making the changes for people with learning disabilities). This is important and necessary work (not least to remove some of the grossly offensive terms related to learning disabilities that were still present in health systems), but it takes time, is mind-blowingly complicated, is likely to be uneven in where and how well the changes are being made, and can result in people with learning disabilities getting lost from as well as added to GP health record systems. Out of this SNOMED soup the recording of Down syndrome, let alone 'severe or profound learning disability', is I believe in no way at a point to underpin a robust vaccination programme.

This is evident in the guidance being sent to GPs, and evidence that different areas and different GP practices are making very different decisions about prioritising people with learning disabilities for COVID-19 vaccines.

The text below was shared on Twitter by Edel Harris, the CEO of Mencap (no link was provided and I have not been able to find it on the web), as a guidance letter being sent to GPs. [UPDATE: Stuart Outterside has very kindly provided the link for this letter, which is here - the information about people with learning disabilities is in Annex B https://www.england.nhs.uk/coronavirus/wp-content/uploads/sites/52/2021/02/C1124-Vaccination-of-cohorts-5-6-and-additional-funding-for-residential-settings-13-Feb-2021-1.pdf ). I read this guidance as acknowledging that GPs don't have the information on their health records to reliable identify people with severe and profound learning disability, and basically shrugs its shoulders and tells GPs to do whatever they think is right in their local area.

This guidance letter perfectly illustrates the worst fears of me and many other people about trying to apply current JCVI advice in the real world. First, the lack of reliable health records information means that a huge amount of pointless effort amongst health service personnel will go into gatekeeping who amongst people with learning disabilities will be deemed a priority for a COVID-19 vaccine. Second, it places a huge onus on families, friends and others supporting people with 'severe and profound learning disability' to actively come forward and make a case, at a time when GPs are even more stretched than usual. Third, it will still ignore people with learning disabilities who aren't deemed to be part of this group, and this whole gatekeeping farrago will be replicated for every other underlying health condition. Fourth, it relies on GP practices to step up and do the right thing, and all the evidence we have (for example on annual health checks) points to huge variations in how GPs treat people with learning disabilities. 

It seems that some GPs are stepping up and taking matters into their own hands in vaccinating younger people with learning disabilities, including my niece, for which I'm profoundly grateful. I've also seen that some Clinical Commissioning Groups (I think I've seen Oxfordshire, and Kent and Medway, although I'm sure there are others that I have not heard about) have taken a decision to include adults with learning disabilities in higher priority groups for the COVID-19 vaccination.

Taken together, this confusion, uncertainty and reliance on ad hoc local decision-making are the perfect conditions for existing inequalities to widen even further. We can see from the OpenSafely data that vaccination gaps are already appearing for people with learning disabilities, even when defining and finding the groups of people with learning disabilities should be relatively straightforward. Rather than draining everyone's energy with gatekeeping policing, why not aim to vaccinate everyone with learning disabilities as a priority and concentrate on the practical actions that will matter in closing the vaccination gap?

Disability benefits, people with learning disabilities and autistic people - update

This is a quick blogpost about disability benefit statistics, people with learning disabilities and autistic people, updating one from about a year ago, with figures mainly up to May 2020. All these figures are obtained from the excellent DWP Stat-Xplore online tool. I’m going to talk about three disability benefits here:

1) Disability Living Allowance. The Disability Living Allowance (DLA) is a tax-free benefit for disabled people who need help with mobility or care costs. Disability Living Allowance (except for those born before 9 April 1948 and those aged under 16 at the time of application) is being replaced by Personal Independence Payments. The DLA consists of two components which are assessed and paid separately, a Care Award (paid at higher, middle and lower rates) and a Mobility Award (paid at higher and lower rates).

The Department for Work and Pensions (DWP) provides quarterly information on Disability Living Allowance (DLA), that can be disaggregated for adults with ‘learning difficulties’ in England. The DWP definition of ‘learning difficulties’ includes ‘learning difficulties’’ (an old generic code still used for pre-2008 cases before more detailed sub-categories were introduced), ‘Down’s syndrome’, ‘Fragile X syndrome’, ‘learning disability – Other/type not known’, ‘Autism’, ‘Asperger syndrome’, and ‘Retts disorder’². This definition is much broader than other government departments’ definitions of the population of people with learning disabilities.

2) Attendance Allowance (AA), which is paid to disabled people over the age of 65 to help with personal care. This can be paid at two rates to reflect the level of care required, and in the statistics uses the same broad definition of ‘learning difficulties’ as the DLA statistics.

3) Personal Independence Payment (PIP); a benefit for adults with sickness and/or disability replacing the DLA, but with some important differences. Information on the PIP is available on a monthly basis for adults with learning disabilities, under the category ‘Main Disabling Condition/Psychiatric Disorders/Learning Disability Global’, and for autistic people under the label ‘Main Disabling Condition/Psychiatric Disorders/Autistic Spectrum Disorders’.

In this blogpost I’m trying to get a sense of how many people with learning disabilities and autistic people (I’m assuming that the broader category of ‘learning difficulties’ is mainly these two groups of people) have been getting some form of disability benefit over time. To help with this, I’ve looked at four broad age groups: children and young people (age 0-15 for DLA); younger working age adults (age 16-44 for DLA and PIP); older working age adults (age 45-64 for DLA and PIP); and older adults (age 65+ for DLA, PIP and AA). The graphs include people getting payment for the benefit concerned, and are either people with ‘learning difficulties’ (DLA and AA) or, separately, people with learning disabilities and autistic people (PIP).

What do we find? The first graph shows how many children and young people with ‘learning difficulties’ received DLA (the only one of these three benefits where children and young people are eligible), from May 2012 to May 2020. The graph shows a steady increase in the number of children and young people with ‘learning difficulties’ getting DLA, with if anything a faster rate of increase in recent years, up to 219,099 people in May 2020.

The next graph below shows information for younger working age adults (aged 16 to 44), from May 2012 to May 2020, and includes both the DLA and the introduction of the PIP. As more and more people transfer from DLA to PIP there is a rapid decrease in the number of younger working age adults with ‘learning difficulties’ getting the DLA, and similar rises in the number of people with learning disabilities and autistic people getting a PIP. The grey line in this graph shows the combined total of people getting one of these disability benefits. This shows some fluctuations over time, with year-on-year increases punctuated by a dip in 2016 and no real change from 2018 to 2019. By May 2020 206,597 younger working age adults with learning difficulties, learning disabilities, or autistic younger working age adults, were getting either DLA or PIP.

The third graph, below, has the same information for older working age adults with learning difficulties aged 45-64 (note that the vertical scale for this graph is different to the previous ones, as the overall numbers are smaller). This graph also shows a rapid decrease in the number of people getting DLA from 2012 to 2019, with a sharp rise in the number of people with learning disabilities getting PIP but relatively few autistic people getting PIP. The combined total for this age group shows a much slower rate of increase for people getting either disability benefit, with slight decreases from 2018 onwards. By May 2020 59,976 older working age adults with learning difficulties, learning disabilities, or autistic older working age adults, were getting either DLA or PIP.

The final graph (again with a different vertical scale as the number of people is much smaller) has information on the number of older people with ‘learning difficulties’ (DLA, AA) or older people with learning disabilities or autistic people (PIP) getting one of these disability benefits. The number of older adults with learning difficulties getting AA is relatively small and has gradually declined from 2012 to 2020. As with older working age adults, sharp increases in the number of older people getting DLA is accompanied by a sharp increase in the number of older adults with learning disabilities getting PIP but relatively few older autistic adults getting PIP. Overall, the number of older adults with learning difficulties, learning disabilities or autistic older adults getting one of these disability benefits has steadily increased from 2012 to 2020, but the rate of increase has slowed over time. By May 2020 18,695 older adults with learning difficulties, learning disabilities, or autistic older adults, were getting either DLA, AA or PIP.

I’m very happy for others to make more informed interpretations of these statistics than me, and I’m very happy to people to tell me about errors I have made in putting together the information for this blogpost. From my limited understanding of the statistics in these graphs, a couple of things leap out at me:

1) The increasing numbers of children and young people with ‘learning difficulties’ getting DLA is in sharp contrast to the number of adults of all ages getting some form of disability benefit. Is this because autistic children are more likely to be recognised and deemed to be eligible for DLA? And what happens when these children and young people grow up and have to go through the process of transfer to PIP?

2) It looks to me like fewer adults of all ages are eligible for PIP than have been eligible for other disability benefits in the past, so previous increases in the number of adults getting some of disability benefit (which you would expect from population predictions of the number of adults with learning disabilities) have stalled in all adult age groups. 

3) Where are the middle-aged and older autistic people? Whereas identification might be more comprehensive and improving for children, young people, and younger working age autistic adults, identification of older autistic people (certainly to the point of being eligible for a disability benefit) does not seem to be improving at anything like the same rate.

Overall, if population predictions are correct there should be more people with learning disabilities and more autistic people of all ages over time becoming eligible for a disability benefit. The figures here suggest that while we are still seeing this for children and young people (where PIP does not apply), we are no longer seeing it for adults of any age. What are the consequences of this for all those people who should be getting a disability benefit to help them flourish, both now and in the future?

And of course there is the final question of what impact the COVID-19 pandemic will have had on the number of people with learning disabilities and autistic people getting these disability benefits?

Beyond urgent: COVID-19 vaccination and people with learning disabilities

 This blogpost both updates a previous more detailed blogpost about this and tries to make an urgent case for why the entire adult population of people with learning disabilities in England (and those providing daily care and support for people, including family members and paid support workers) should be a top priority for COVID-19 vaccination now.

People with learning disabilities are at much higher risk of death from COVID-19 than the general population, with COVID-19 death rates for people with learning disabilities aged 55-64 higher than death rates for the general population aged 75+, and much higher than death rates for the general population aged 65-74. 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 analysis above is based on the first peak of the COVID-19 pandemic in England. The graph below shows weekly information on the number of COVID-19 deaths of people with learning disabilities notified to the LeDeR programme up to 1st January 2021. Although not at the levels of the first peak, there is clearly a sustained and very serious second wave of deaths for people with learning disabilities that has been ongoing since October. This graph will also underestimate the number of COVID-19 deaths of people with learning disabilities for two reasons: 1) notifications of deaths can take time (particularly over holiday periods such as Christmas and New Year), so figures for very recent weeks will increase further as these notifications come into the LeDeR programme; 2) the LeDeR programme is not mandatory, and it is estimated that notifications to LeDeR are 65% of the actual number of deaths of people with learning disabilities. So far, 925 COVID-19 deaths of people with learning disabilities have been notified to the LeDeR programme – which would suggest that around 1,420 people with learning disabilities in England have actually died of COVID-19.

 

Because of gross health inequalities that already existed pre-COVID, with people with learning disabilities dying 15-20 years earlier on average than the general population, relatively few people with learning disabilities live into the older age brackets that are a priority for COVID-19 vaccination.

The table below is from the excellent @COVID19actuary group, in a report discussing vaccination priorities. Among other things, it shows (for England and Wales) the population added at each COVID-19 vaccination priority level, and where possible an estimate of how many vaccinations needed to prevent one death (as far as I can tell, this is the additional population in each vaccination group divided by the number of COVID-19 deaths of people in that group). 

 

Based on a variety of sources, I would estimate that (out of a total of around 240,000 adults with learning disabilities in England registered as such with their GP, which itself is a severe underestimate of the number of adults with learning disabilities living in England), the following numbers of people with learning disabilities might be within these vaccination groups:

Group 1: 6,000 people with learning disabilities aged 65+ in a care home (2.5% of adults with learning disabilities)

Group 2: 2,500 people with learning disabilities aged 80+ not living in care homes (1% of adults with learning disabilities)

Group 3: 2,500 people with learning disabilities aged 75-79 not living in care homes (1% of adults with learning disabilities)

Group 4: 6,000 people with learning disabilities aged 70-74 not living in care homes (2.5% of adults with learning disabilities)

Clinical extremely vulnerable (CEV). Very hard to estimate for adults with learning disabilities aged 16-64 (for reasons that are extremely important and I will return to later). People with Down syndrome are included in the CEV group, and people with learning disabilities are more likely to experience some of the other health conditions listed under CEV, so maybe 30,000 adults with learning disabilities (12.5% of adults with learning disabilities)

Group 5: 7,500 adults with learning disabilities aged 65-69 not living in care homes (3% of adults with learning disabilities)

At this point, the @COVID19 actuary table suggests that 16.7 million people in England and Wales will have received a COVID-19 vaccine, of which less than 55,000 will be people with learning disabilities. The table also suggests that, as vaccination proceeds through the priority groups, the number of vaccinations needed to prevent one death increases rapidly. For adults with learning disabilities as a total population, if 1,420 people with learning disabilities have died from COVID-19 so far out of a population of 240,000, then 169 vaccinations are needed to prevent the death of one person with learning disabilities. This is the same level as people aged 80+ in Vaccination Group 2 (160 vaccinations needed to prevent the death of one person).

Group 6. I found it impossible to come up with an estimate of the number of adults with learning disabilities aged 16-64 who would fit into the list of underlying conditions placing people at greater risk. This list explicitly includes people with ‘severe and profound learning disabilities’, and people with learning disabilities are more likely to experience the types of health conditions (e.g. diabetes) that are on this list, but we do not have the information to estimate the number of people with learning disabilities who count in this vaccination group.

Most adults with learning disabilities do not live in the care homes (especially care homes for older people) targeted in COVID-19 vaccination priority groups. Only 16% of adults with learning disabilities aged 18-64 getting long-term social care live in care or nursing homes, and the most common living situation of adults with learning disabilities aged 18-64 is living with their family (36% of people). Both people with learning disabilities living in supported living and living with families have been an extremely low priority for PPE, COVID-19 testing and ongoing support from most health and social care services, despite extremely difficult services that are taking a real toll on people and those supporting them. If frontline workers are a COVID-19 vaccination priority, then so should family members with direct caring responsibilities.

Practically, health information systems do not reliably record the type of information that would be needed to decide whether a person with learning disabilities should be included in the Clinically Extremely Vulnerable or Underlying Health Conditions vaccination priority groups. For example, GP records do not always record something as straightforward as whether a person has Down syndrome (which will qualify someone for the CEV vaccination group), and very rarely record whether the GP considers a person to be a person with severe or profound learning disabilities (which will qualify someone for the Underlying Health Conditions vaccination priority group). We also don’t have good evidence for the most part to pinpoint who within the population of people with learning disabilities is at particular risk (and who is not at risk), but we do know that the population of adults with learning disabilities as a whole is at much greater risk (and at younger ages) than the population generally.

As we saw in Wave 1 of the COVID-19 pandemic (triaging protocols for treatment, blanket DNARs etc), the existing health system discrimination experienced by people with learning disabilities gets worse when health systems are under intense pressure. Current vaccination priorities will incentivise complicated eligibility policing for people with learning disabilities, which rarely ends well for people. A lack of national focus on COVID-19 vaccines for people with learning disabilities means the potential for discrimination is greatly increased, and means a lack of attention to providing the reasonable adjustments that some people will need to get the COVID-19 vaccine safely. An interim analysis of 179 adults with learning disabilities across the UK, from the @CoronavirusLD project, recently reported that 80% of people with learning disabilities said they would take the COVID-19 vaccine, with most of the rest unsure.

There is an infrastructure to support COVID-19 vaccinations for all adults with learning disabilities, particularly learning disability nurses, who are in ideal position to mobilise a national COVID-19 vaccination effort for people with learning disabilities. 

Compared to the scale of the COVID-19 vaccination rollout, the population of adults with learning disabilities is relatively small. Social care support staff should be included within the existing COVID-19 vaccination priority groups. Alongside people with learning disabilities, family members providing direct care and support should also be a high priority for the COVID-19 vaccine – their risk is at least as high as people paid to provide care and support.

So – as in my previous blogpost in November, my proposal is really straightforward, although this is now urgent as the COVID-19 vaccination programme is up and running. 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 240,000 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. Learning disability nurses provide an existing infrastructure to mobilise a national COVID-19 vaccination programme for people with learning disabilities. As well as saving lives amongst a group of people who already get a raw deal from health services and continue to be disproportionately hit by COVID-19, just think what a difference it will make to people’s anxiety when restrictions and lockdowns may have taken a real toll.