Monday, 19 July 2021

Inside and Outside - the lifting of COVID-19 restrictions in England and people with learning disabilities

On the day (19th July 2021) that England have legally lifted pretty much all restrictions while cases of coronavirus are rising exponentially, this blogpost will try to set out what I think we know about the current situation of people with learning disabilities in relation to COVID-19 and the potential consequences of the new absence of public health measures to restrict the virus. I will try to be measured – I may not succeed. 

COVID-19 risk of infection, hospitalisation and death among people with learning disabilities

Throughout the first two major peaks of COVID-19 in the UK, multiple sources of information have reported the same thing – that people with learning disabilities have been much more likely to die from COVID-19 than other people. Who gets counted as a person with learning disabilities has varied across analyses but consistently, in each wave, people with learning disabilities have been between 4 and 8 times more likely to die from COVID-19 than non-disabled people, with people with Down syndrome, people in residential care homes, and potentially people with profound and multiple learning disabilities at even higher risk of death[1]. Whatever learning might have happened after the first peak of COVID-19, it clearly didn’t result in measures to reduce the risk of COVID-19 deaths among people with learning disabilities in the second peak.

Of additional relevance now is that studies have also reported that people with learning disabilities were more likely to be infected with COVID-19 than non-disabled people, and that people with learning disabilities were much more likely to be hospitalised with COVID-19 than non-disabled people. I’ll come to potential reasons for COVID-19 infection rates being higher for people with learning disabilities later in this blogpost. In terms of hospitalisation, reviews of COVID-19 deaths among people with learning disabilities analysed by the LeDeR programme have reported that signs of acute deterioration in the health of people with learning disabilities with COVID-19 were often not recognised by support staff. The LeDeR programme has also reported that 73% of all people with learning disabilities who died in 2020 had a Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) notice on their records (compared to 71% of people in 2018 and 70% of people in 2019), and that 71% of these DNACPR decisions were judged by a reviewer to have been correctly completed and followed (compared to 76% in 2018 and 73% in 2019).

But COVID-19 vaccination is supposed to in effect break the link between COVID-19 infection and deaths, and reduce the link between COVID-19 infection and hospitalisation. It’s early days, but information from NHS England on COVID-19 deaths among people who have been hospitalised (not ideal, but since the LeDeR programme transferred to a different organisation updates from this programme have been irregular) suggests that the number of people with learning disabilities (and possibly autistic people too in this dataset) dying from COVID-19 has so far remained low as Delta variant COVID-19 cases increase. It is, however, early days given the time lag from cases to potential hospitalisations and deaths, and the number of people with learning disabilities dying from COVID-19 right now is not zero (see the graph below).



 COVID-19 vaccination and people with learning disabilities

Since the JCVI grudgingly prioritised adults with learning disabilities registered with GPs for the COVID-19 vaccine in late February 2021, there has been a concerted effort to vaccinate adults with learning disabilities. The OpenSafely consortium has been producing regular reports on COVID-19 vaccination rates in different groups using records from about 40% of GP practices in England, including quite a lot of information about people with learning disabilities. In older groups and younger adults who have been shielding, over 90% of people with learning disabilities have had at least one dose of the COVID-19 vaccine. Among adults with learning disabilities aged 16-64 who haven’t been shielding, around 85% of people have had at least COVID-19 vaccine dose and 77% of people have had both vaccine doses, although vaccination rates are lower among people aged 16-29 and among people from Black, Mixed, South Asian and Other minority ethnic communities (see the graph below).


These vaccination rates are testament to the efforts of a huge number of people in recent months. It still leaves substantial numbers of people with learning disabilities who are not vaccinated at all, or who are only partially vaccinated, in an England where the Delta COVID-19 variant is circulating widely (wildly?) and is highly transmissible.

Extrapolating mainly from the most recent OpenSafely data, I estimate that between 35,000 and 40,000 adults with learning disabilities registered as such with GPs in England have not yet had a COVID-19 vaccine, and at least 16,000 people have not yet had their second dose (the table below shows my working for those interested, but it’s in the TMI category really). And these figures don’t include the unknown but large number of adults with learning disabilities who are not registered as such with their GP. They also don’t include children with learning disabilities, of which there were over 70,000 with an Education, Health and Care Plan in education in 2020.

 OpenSafely – vaccinations up to 8th July (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+

497

28

525

94.7%

1,243

70

70-79

2,856

154

3,010

94.9%

7,140

385

65-69

2,324

189

2.513

92.5%

5,810

473

65+ in care homes

 

 

 

96.2% (overall)

6,518*

257

16 -69 shielding

25,025

1,932

26,957

92.8%

62,563

4,830

16-64

70,483

12,145

82,628

85.3%

176,208 (16,503 one dose only)

30,363

Estimated totals

 

 

 

 

259,482

36,378

* Total number of older people with learning disabilities in residential care and nursing homes in England taken from NHS Digital SALT social care statistics 2019/20 – overall COVID-19 vaccination rate applied to these figures for extrapolated numbers of people vaccinated and not vaccinated

 

 COVID-19 infection risks and the lives of people with learning disabilities

So far, the information has told us very clearly that people with learning disabilities have been much more likely to die of COVID-19 than other people and that this didn’t improve from the first to the second COVID-19 peak. People with learning disabilities have been much more likely to be hospitalised with COVID-19, although treatment for people both before and after hospitalisation is open to question. While COVID-19 vaccination rates are high among most groups of adults with learning disabilities, it still leaves substantial and unknown numbers of adults and children with learning disabilities not or at least only partially vaccinated.

So, where does this leave people with learning disabilities and those close to them as COVID-19 cases rise exponentially and restrictions to reduce COVID-19 infection risk for everyone are withdrawn? I am a small part of a UK-wide research project which has been listening to adults with learning disabilities, family members and support workers through the pandemic, and today we have released findings from interviews and surveys conducted in April and May 2021 about the situation of adults with learning disabilities when it comes to COVID-19 (all the findings from this Wave of interviews and surveys can be found here). Cohort 1 involves almost 600 adults with learning disabilities across the UK who we interviewed by Zoom/phone etc; Cohort 2 involves family members or support workers reporting on the lives of over 250 adults with learning disabilities who were not in a position to be interviewed, including a substantial number of adults with profound and multiple learning disabilities. What have people told us?

First, even in a period of lower case rates in April and May 2021, COVID-19 infection was a presence in some people’s lives. In the four weeks before they provided us with information, 5% of people in Cohort 1 and 6% of people in Cohort 2 had been supported by a support worker who had got COVID-19 – in addition 2% of people in Cohort 1 and 3% of people in Cohort 2 were living with someone who had got COVID-19 in the last four weeks. Overall, 10% of people in Cohort 1 and 13% of people in Cohort 2 were reported to have had COVID-19 at some point. This is a continuing worry for people with learning disabilities and those close to them as COVID-19 case rates rise – national statistics up to 11th July 2021 suggest that 76%-80% of social care workers have had at least one dose of the COVID-19 vaccine, but only 64% of social care workers in CQC-registered services and  31% of social care workers in other services have had both vaccine doses.

As in previous waves, the consequences of COVID-19 infection can be severe for people with learning disabilities. 36% of people in Cohort 1 and 76% of people in Cohort 2 were reported to have a health condition that would be a worry if they caught COVID-19. Among those who had previously caught COVID-19, 10% of people in Cohort 1 and 6% of people in COVID-19 had had COVID-19 symptoms for more than a month, potentially a sign of Long-COVID among substantial numbers of people with learning disabilities. Not surprisingly, among people in Cohort 1, 14% were worried a lot about getting COVID-19, 10% were worried a lot to leave the house, 32% were worried a lot that family friends getting COVID-19, and 19% were worried a lot about giving COVID-19 to someone else.

Given the potential consequences of COVID-19, it’s not surprising that people with learning disabilities and those around them were actively managing this risk at home. 9% of people in Cohort 1 and 35% of people in Cohort 2 were shielding in April-May 2021, whether they had received an official letter or not (and of course having a shielding letter now confers no support of any kind). For 66% of people in Cohort 1 and 45% of people in Cohort 2, others were using some form of PPE (at least face masks) when with people in their home. There were still restrictions on visits to most people’s homes in either cohort, whether service-imposed or voluntary restrictions by family members to keep the person safe.

People with learning disabilities were also using face masks when going out. In Cohort 1, although 20% of people were exempt from wearing a face mask, 90% of people were using face masks when in enclosed spaces out of the house, like shops or public transport. In Cohort 2, 62% of people were exempt from wearing a face mask, but 57% of people wore face masks in enclosed spaces out of the house.

What will the COVID-19 free-for-all in England mean for different groups of people with learning disabilities?

For adults with learning disabilities who we interviewed in Cohort 1, surely people are more likely to be coming into contact with others who are infected with COVID-19. Whether it’s going out to get essentials like food and medicine (76% of people in Cohort 1 did this in the 7 days before being interviewed), going on public transport (34% of people did this in the 7 days before being interviewed), or getting support from support workers, how are people supposed to manage their COVID-19 risk when others around them aren’t? What’s going to happen to people’s jobs, where they have been furloughed or jobs have been held open for them – are people going to have to face working in an increasingly risky environment like a supermarket, or losing their job? The support that people had to live their lives has not returned to anything like the levels they were before the pandemic, which even then were sketchy after 10 years of austerity in social care budgets.

For adults in Cohort 2, often with greater health needs and need for 24-hour support, there seems to be no end in sight to continued severe restrictions in people’s lives to try and keep people safe. As an example, in April-May 2021 the most common reasons for people in Cohort 2 to leave the house were to go for a drive in a private car (62% of people) or go to a park or green space (55% of people) – will even parks now feel like high-risk places? The risks of allowing multiple support workers into a person’s home will also only increase (especially as there is still little to no financial support to support workers to self-isolate). For many people with learning disabilities with multiple health needs the decision about whether to have the COVID-19 vaccine is complicated and nuanced, as the effects of the vaccine on a person’s health can be difficult to predict and for some people the process of getting a vaccine can be really difficult. Families report feelings of exhaustion and depression after being in this situation so long, and also report that this enclosed life is shrinking the worlds of the people they care for, while the continuing withdrawal of vital health and social care services such as postural care is having a substantial impact on people’s skills, health and well-being that can’t be brought back.

In the project I’m involved in we have focused on adults, but there are obviously children and adolescents with learning disabilities facing similarly stark dilemmas. An announcement today (19th July) that only ‘clinically extremely vulnerable’ children will be eligible for the COVID-19 vaccine is extremely unlikely to cover a large proportion of children with learning disabilities, repeating the mistakes the JCVI initially made with eligibility for COVID-19 vaccines among adults. Even if someone got their first COVID-19 vaccine today, it will still be a minimum of three months until the full protective effects of a vaccine would be evident. What are families with a child with learning disabilities supposed to do about schools, short break services, siblings and other family members, and parental employment?

 

16 months on from the first COVID-19 lockdown in England, the withdrawal of restrictions together with the late and limited vaccination of young adults and children, while COVID-19 case rates rise exponentially and the NHS once more goes into COVID crisis mode, does not bode well for people with learning disabilities and those close to them. Many people with learning disabilities and families felt abandoned and forgotten before these measures to help reduce the risk of infection were withdrawn – and now?

Thursday, 6 May 2021

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.



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

 

Friday, 16 April 2021

'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?





Wednesday, 14 April 2021

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?