Building Back Better or The New Normal? Social care statistics and adults with learning disabilities in England

NHS Digital have recently released their annual tranche of statistics concerning social care for adults in England (thanks to @GrahamTAtkins for alerting me to them). This blogpost is the latest in a series about social care statistics concerning adults with learning disabilities in England, updating the statistics to include the latest 2020/21 figures. Because the reporting year for these statistics runs from April to March, these are the first annual statistics that might tell us something about the impact of the COVID-19 pandemic on social care services for adults with learning disabilities. When looking through these statistics it is important to remember the pressures local authorities have been under, which might have affected the quality of the information collected for these statistics.

Councils with social services responsibilities return information to NHS Digital every year on how many adults are using various forms of social care, and how much councils spend on social care (this doesn’t include other types of state funding relevant to social care, such as housing benefit as part of supported living support). I've tried to use some of the statistics to answer three questions.

Question 1: How many adults with learning disabilities were getting access to social care in 2020/2021?

From 2014/15 the types of long-term social care support people get have been grouped into one of six mutually exclusive categories: residential care, nursing care, direct payment only, support via a personal budget partly including a direct payment, a council-managed personal budget, and council-commissioned community support only.

The first graph below shows the number of adults with learning disabilities aged 18-64 getting various types of personal budget or council-commissioned community support at some point during the year from 2014/15 to 2020/21), and also the number of adults aged 18-64 in residential or nursing care.

This graph suggests that trends evident from 2014/15 to 2018/19 (before the COVID-19 pandemic) have continued through to 2019/20 (the end of the financial year 2019/20 was when the first peak of COVID-19 was starting to hit) and 2020/21 (through the first and second/third peaks of the pandemic), although even within these relatively insensitive statistics there are signs of some differences in 2020/21. Adults with learning disabilities aged 18-64 were most commonly getting support in the form of council-managed personal budgets (the extent to which most of these feel any different to council-commissioned community services is debatable). The number of people getting support in the form of direct payment only or with part-direct payment is now the second most common vehicle for long-term social care support, although recent increases appear to have stalled in 2020/21. The number of people getting council-commissioned community support only continues to decrease.

In terms of residential and nursing care, the graph shows that although the number of adults aged 18-64 in residential care and nursing care continues to gradually decline over time, in 2020/21 they still represent 18% of all adults with learning disabilities aged 18-64 getting long-term social care.

In total 133,670 adults with learning disabilities aged 18-64 were getting long-term social care at some point in 2020/21. While there had been a steady trend of increasing numbers of adults with learning disabilities getting long-term social care year on year from 2014/15 to 2019/20, from 2019/20 to 2020/21 there was a decrease of 1,760 in the number of people getting long-term social care. Although the statistics cannot tell us the reasons for this, a big part of the reason is, bluntly, that so many people with learning disabilities have died during the COVID-19 pandemic, with the peak age of death for people with learning disabilities from COVID-19 being 55-64. Extrapolating from notifications of people’s deaths to the LeDeR programme (which is estimated to pick up 65% of the deaths of people with learning disabilities), over 2,500 people with learning disabilities to date in England are likely to have died from COVID-19.

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

Again, council-managed personal budgets are the most common form of community-based support for older adults. These, along with other forms of personal budget, are continuing to increase over time while the number of adults getting council-commissioned community services only continues to decrease. These trends have continued into 2020/21. The number of older adults with learning disabilities in both residential care and nursing care fluctuates over time, but a broad trend of increases over time from 2014/15 to 2019/20 was not continued into 2020/21, where there decreases in the number of people aged 65+ in both residential and nursing care.

In total 17,895 adults with learning disabilities aged 65 or over were getting long-term social care at some point in 2020/21, continuing a steady upwards trend from 2014/15.

 

However, the statistics I’ve presented so far are for people getting long-term social care at some point in each year. This may under-estimate the impact of COVID-19 on the number of people currently getting social care, particularly where people have died during the year. The NHS Digital statistics also have snapshot figures on the number of people with learning disabilities getting adult social care at the end of each financial year, which we can compare to the number of people getting social care at some point during the year. The graph below shows this information for adults with learning disabilities aged 18-64, from 2014/15 to 2020/21. In 2020/21, there is a clear reversal in the upward trend, with both people getting long-term social care at some point in the year (133,670 people) and people getting long-term social care support at the end of the financial year (125,480 people) falling from the year before.

 

The next graph below shows the same information for people aged 65+. While the number of people getting long-term social care support at some point in the year continues to increase into 2020/21, the number of people getting long-term care at the end of the 2020/21 financial year has dropped compared to 2019/20 (this also dropped from 2018/19 to 2019/20).

 

While these statistics are difficult to interpret, there were 1,500 fewer adults with learning disabilities of all ages getting long-term social care at the end of March 2021 compared to the same time the year before.

  

Question 2: What happened to people trying to get a social care service?

Although it is limited, adult social care statistics also include information on new people coming to the attention of social care services, and what happens to them after a ‘completed episode of short-term care to maximise independence’ (which to my untutored eye looks functionally equivalent to assessment). The graph below shows this information for all adults with learning disabilities aged 18+, from 2014/15 to 2020/21. Looking at the graph, 2018/19 looks like a bit of an anomaly, largely due to much higher numbers of people being signposted to universal services or other forms of non-social care support than in any other year. There seems to be an upward trend in the number of adults with learning disabilities coming to the attention of social services from 2014/15 to 2018/19, followed by a decrease from 2018/19 through to 2020/21.

In terms of what was happening in 2020/21, 820 adults with learning disabilities (almost all of whom were aged 18-64) came to social services as new clients. Of these, 37% (305 people) were identified as having no needs and therefore requiring no services. For 12% (100 people) the response from social services was to signpost people to universal services or other forms of non-social care support. Relatively few people (85 people; 10%) went on to get some form of low level or short-term support from social care, with slightly more people (165 people; 20%) going on to get some form of long-term social care support. Very few (25 people; 3%) declined a service that was offered. 

Throughout the pandemic, the number of adults with learning disabilities coming to the attention of social care declined, with a minority of this group getting any form of social care support during the COVID-19 pandemic beyond signposting elsewhere. 

 

Question 3: How much money were councils spending on social care services for adults with learning disabilities?

The graph below shows gross expenditure by local authorities on social care for adults with learning disabilities from 2014/15 to 2020/21, broken down by age band and categories of spending. It is important to remember that these figures do not include housing benefit (an essential component of supported living arrangements). These figures are also not adjusted for inflation.

 

A couple of observations. Overall, despite the number of adults getting social care decreasing during 2020/21, social services expenditure continued its steady upwards trajectory in absolute terms in 2020/21 at an annual growth rate of 4% from 2014/15. Local authority expenditure on social care for adults with learning disabilities totalled £6.3 billion in 2020/21, 39% of all local authority expenditure on adult social care. The two line graphs below show trends in expenditure on specific types of social care service for adults with learning disabilities aged 18-64 and 65+ (with different scales for the two age groups). Spending on residential care is still the biggest category of expenditure, although spending on supported living is rapidly catching up, and spending on home care continues to decline.

 

Unit costs for residential care and nursing care for adults with learning disabilities continued their upward trend in 2020/21. For adults aged 18-64, the average cost to local authorities of residential care was £1,687 per person per week and nursing care £1,446 per person per week. Unit costs were cheaper in 2020/21 for adults aged 65+ compared to adults aged 18-64 (£1,126 per person per week in residential care; £914 per person per week in nursing care), although unit costs are higher for these services for adults with learning disabilities than for any other group of people getting social care.

 

To sum up, it seems like the COVID-19 pandemic has largely magnified longer term trends in social care services and expenditure for adults with learning disabilities. The big, and grim, difference is that 1,500 fewer adults were getting long-term social care at the end of March 2021 compared to the end of March 2020. However, there is a question about how sensitive these statistics are to the seismic changes to people’s social care support that people with learning disabilities have been reporting throughout the COVID-19 pandemic. For example, in the Coronavirus and people with learning disabilities project many people reported paying for social care services they weren’t currently getting, getting less of a service than they used to, or some services which involved going out being replaced by online services, none of which would be picked up by these statistics. With local authority expenditure on social care services for adults with learning disabilities still increasing (and now representing 39% of all adult social care expenditure) even though fewer people are being supported (how much expenditure is on 'voids'?), are local authorities going to ‘build back better’, or is this now ‘the new normal’?

Challenging Obstruction - blog for Dying To Matter

This is a version of a piece for the Dying To Matter website. This one is a bit longer and contains a fuller set of references.

Please be warned that there is some grim information and opinions quoted in this blogpost, and some of the references contain what is now offensive language.

 

How and when people with learning disabilities die has for a long time been one of the great unmentionable issues. The role of policies and services in people’s deaths, both at a collective level and in terms of individual people’s deaths, has for the most part been rendered invisible.

In this iceberg of indifference, reluctantly battling loved ones or media scrutiny have, in the face of obstruction or worse, managed to occasionally push the deaths of people with learning disabilities to the surface. This piece will provide some context about efforts in England to expose the truth about the deaths of people with learning disabilities, and the responses to these efforts.

There is a long, grim, history of both high death rates among people with learning disabilities in institutions and these death rates being ignored. Among people in institutions run by the Metropolitan Asylums Board, in 2014 one in nine people (11.2%) in asylums died. In 1918 more than one in four people in asylums died (27.0%), partly because of a previous pandemic, the Spanish Flu[1]. Move forward 50 years, to the Inquiry into allegations of ill-treatment of people with learning disabilities at Ely Hospital in 1969, and little appears to have changed:

“The story of Emerson’s death betrays what seemed to us to be an unduly casual attitude towards death at Ely.” [2]

This and other inquiries did not result in major statements of government policy paying much attention to the deaths of people with learning disabilities[3] [4] until Valuing People Now in 2009[5] (there has not been a comprehensive strategy for people with learning disabilities in England since). Valuing People Now was the culmination of a government response to increased activity documenting both the health inequalities experienced by people with learning disabilities in life[6], and the consequences of health service discrimination on people’s deaths[7], followed by the government setting up an “independent inquiry into access to healthcare for people with learning disabilities”[8].

Since then, the language of health inequalities and premature deaths has become commonplace in repeated reviews[9] [10], inquiries[11] [12], policy statements and government responses[13] [14] [15] [16] [17]  to the stubborn grim realities that keep on surfacing. At this level, the talk is of deep concern, unwavering commitment, and continuous incremental progress. While there have been some positive changes in specific health programmes such as flu jabs and health checks over time[18], the evidence we have tells us that improvements in the life expectancy of people with learning disabilities have stalled in recent years[19], the 20-year gap in the age at which people with learning disabilities die compared to other people is not closing and may be starting to widen[20], and the institutional discrimination resulting in people’s deaths continues unabated[21] [22] [23] with people with learning disabilities three times more likely to die from an avoidable medical cause of death compared to other people[24].

Despite official narratives of ‘tackling the problem’, the experience of grieving family members and allies is of multiple systems that stack the deck against the truth-telling and fundamental change necessary to prevent people with learning disabilities dying before their time. The JusticeforLB campaign[25] following the death of Connor Sparrowhawk in a ‘specialist’ NHS inpatient unit, had to fight layer upon layer of health service suppression, deflection, sabotage, brutal attempts to discredit and mother-blame[26], which was replicated throughout Connor’s inquest[27] and in the subsequent fitness to practice tribunal of the lead psychiatrist on the unit[28].

Open Justice live tweeting of inquests of people with learning disabilities who have died[29] reveal the brutal reality of how inquests are conducted, with health and social care services stacking themselves with aggressive lawyers (paid for with public money) while families having for pay for their own legal representation are told that the process is not adversarial[30]. The live tweeting of inquests shows over and over again how the fundamental basics of care can be absent for people with learning disabilities: not getting food for weeks while in hospital; obvious and life threatening health issues not being noticed or considered worthy of addressing by support staff; professionals not taking responsibility and hiding behind mythical ‘complexities’ of the person.

The very processes that are supposed to uncover the truth about the deaths of people with learning disabilities are themselves subject to similar tactics of institutional suppression, delay and deflection. A report by Mazars into Southern Health Foundation NHS Trust, where Connor Sparrowhawk died, revealed that investigations into the deaths of people with learning disabilities were simply not conducted, making people’s deaths invisible to scrutiny (Southern Trust originally tried to brush Connor’s death under the carpet as due to ‘natural causes’, rather than the neglect found at the inquest)[31]. This report was itself subject to so much delay that it was eventually leaked to the press, after concerted attempts to water down and discredit its contents.

A review by England’s health and social care regulator, the Care Quality Commission, documented widespread poor practice across NHS Trusts in investigating people’s deaths[32], yet its final recommendations did not do justice to what families told the review[33] and has not resulted in fundamental improvements[34].

The Learning from Deaths Review Programme (LeDeR) was set up as a national programme across England to ensure that all deaths of people with learning were reviewed as part of a local and national service improvement programme[35]. However, the programme was under-resourced from the outset, with NHS Trusts expected to find their own (non-independent) reviewers and participation in the LeDeR programme voluntary rather than mandatory. Annual reports from the LeDeR programme were also subject to long delays, with the programme highly restricted by its commissioner (NHS England) in what it could say.

Where are we now? It is clear that the series of initiatives ostensibly designed to tackle the premature deaths of so many people with learning disabilities do not seem to be having a major impact on the health inequalities people experience, the basic standards of good healthcare that are less often applied to people with learning disabilities, or on the rigour and sensitivity of investigations and inquests when someone dies. Fundamentally, these piecemeal initiatives are not addressing the deep institutional discrimination against people with learning disabilities that seems to be so pervasive. Without a serious attempt to address this institutional discrimination, we remain stuck in a performative and pointless cycle of Committee, Inquiry, Report, Repeat[36].

I want to finish with an extended (horrible) quote: “The physical welfare of the [person with learning disabilities] of today is the subject of far more care and attention than was the case a few generations back. Then many perished who, under present conditions, would have survived; and there can be no doubt that modern medical and surgical practice, together with advances in preventive medicine, have diminished the mortality rate, not only of the fit, but of the unfit also. Nevertheless, the vitality of [people with learning disabilities] as a class is decidedly inferior to, and their expectation of life still remains appreciably less than, that of the ordinary population.” This was written in 1914 by the highly influential psychiatrist and eugenicist Alfred Tredgold, at a time when half of all the people in the institution he oversaw died between the ages of 15 and 19 years[37]. Can we really say the worldview expressed here is any different now?

 

 

---

[1] Walmsley J, Todd S, Bernal J and O’Driscoll D (2021). When epidemics bring too many deaths. Community Living, 34.3, April9 2021. https://www.cl-initiatives.co.uk/when-epidemics-bring-too-many-deaths/

[2] Report of the Committee of Inquiry into Allegations of Ill-Treatment of Patients and other irregularities at the Ely Hospital, Cardiff (1969). Presented to Parliament by the Secretary of State of the Department of Health and Social Security. Cmnd 3975. London. https://www.sochealth.co.uk/national-health-service/democracy-involvement-and-accountability-in-health/complaints-regulation-and-enquries/report-of-the-committee-of-inquiry-into-allegations-of-ill-treatment-of-patients-and-other-irregularities-at-the-ely-hospital-cardiff-1969/

[3] Department of Health and Social Security (1971). Better services for the mentally handicapped. Cmnd 4683. London: HMSO.

[4] Department of Health (2001). Valuing People: A new strategy for learning disability for the 21^st century. Cm 5086. London: Department of Health. https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/250877/5086.pdf

[5] Department of Health (2009). Valuing People Now: a new three-year strategy for people with learning disabilities. London: Department of Health. https://webarchive.nationalarchives.gov.uk/ukgwa/20130107105354/http:/www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_093375.pdf

[6] Disability Rights Commission (2006). Equal Treatment: Closing the Gap. A formal investigation into physical health inequalities experienced by people with learning disabilities and/or mental health problems. London: DRC. https://disability-studies.leeds.ac.uk/wp-content/uploads/sites/40/library/DRC-Health-FI-main.pdf

[7] Mencap (2007). Death by indifference. London: Mencap. https://www.mencap.org.uk/sites/default/files/2016-06/DBIreport.pdf

[8] Jonathan Michael and the Independent Inquiry into Access to Healthcare for People with Learning Disabilities (2008). Healthcare for all: report of the independent inquiry into access to healthcare for people with learning disabilities. London: Department of Health. https://webarchive.nationalarchives.gov.uk/ukgwa/20130105064250/http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_099255

[9] Care Quality Commission (2016). Learning, candour and accountability: A review of the way NHS trusts review and investigate the deaths of patients in England. London: CQC https://www.cqc.org.uk/sites/default/files/20161213-learning-candour-accountability-full-report.pdf

[10] Care Quality Commission (2019). Learning from deaths: A review of the first year of NHS trusts implementing the national guidance. London: CQC. https://www.cqc.org.uk/publications/themed-work/learning-deaths

[11] Joint Committee on Human Rights (2019). The detention of young people with learning disabilities and/or autism. HC 121. London: House of Commons and House of Lords. https://publications.parliament.uk/pa/jt201919/jtselect/jtrights/121/121.pdf

[12] Joint Committee on Human Rights (2020). Human Rights and the Government’s response to COVID-19: The detention of young people who are autistic and/or have learning disabilities. HC 395. London: House of Commons. https://publications.parliament.uk/pa/jt5801/jtselect/jtrights/395/395.pdf

[13] HM Government (2020). The Government Response to the Joint Committee on Human Rights reports on the Detention of Young People with Learning Disabilities and/or Autism and the implications of the Government’s COVID-19 response. London: HM Government https://www.gov.uk/government/publications/jchr-reports-on-the-detention-of-young-people-with-learning-disabilities-or-autism-government-response

[14] Department of Health and Social Care and NHS England (2018). Government response to the Learning Disabilities Mortality Review (LeDeR) Programme 2^nd annual report. London: DHSC and NHSE https://www.gov.uk/government/publications/government-response-to-the-learning-disabilities-mortality-review-leder-programme-2nd-annual-report  

[15] Department of Health and Social Care (2020). The Government response to the third annual Learning Disabilities Mortality Review (LeDeR) Programme report. London: DHSC https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/865288/government-response-to-leder-third-annual-report.pdf

[16] Helen Whateley (2020). The fourth annual report of the Learning Disabilities Mortality Review Programme: Statement made on 16 July 2020. https://questions-statements.parliament.uk/written-statements/detail/2020-07-16/hcws378

[17] NHS England (2020). LeDeR – Action from learning report. NHS England: 16 July 2020. https://www.england.nhs.uk/publication/leder-action-from-learning-report/

[18] NHS Digital (2021). Health and Care of People with Learning Disabilities Experimental Statistics 2019 to 2020. NHS Digital 28 Jan 2021. https://digital.nhs.uk/data-and-information/publications/statistical/health-and-care-of-people-with-learning-disabilities/experimental-statistics-2019-to-2020

[19] NHS Digital (2019). Health and Care of People with Learning Disabilities Standardised Mortality Ratio Indicator. NHS Digital: 26 Sep 2019. https://digital.nhs.uk/data-and-information/publications/statistical/health-and-care-of-people-with-learning-disabilities/standardised-mortality-ratio-indicator

[20] University of Bristol (2021). The Learning Disabilities Mortality Review (LeDeR) Programme Annual Report 2020. Bristol: Norah Fry Centre for Disability Studies. http://www.bristol.ac.uk/media-library/sites/sps/leder/LeDeR%20programme%20annual%20report%2013.05.2021%20FINAL.pdf

[21] Heslop P, Blair P, Fleming P, Hoghton M, Marriott A & Russ L (2013). Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD) final report. Bristol: University of Bristol. http://www.bristol.ac.uk/cipold/reports/  

[22] Mencap (2012). Death by indifference: 74 deaths and counting. A progress report 5 years on. London: Mencap. https://www.mencap.org.uk/sites/default/files/2016-08/Death%20by%20Indifference%20-%2074%20deaths%20and%20counting.pdf

[23] University of Bristol (2021). The Learning Disabilities Mortality Review (LeDeR) Programme Annual Report 2020. Bristol: Norah Fry Centre for Disability Studies. http://www.bristol.ac.uk/media-library/sites/sps/leder/LeDeR%20programme%20annual%20report%2013.05.2021%20FINAL.pdf

[24] University of Bristol (2021). The Learning Disabilities Mortality Review (LeDeR) Programme Annual Report 2020. Bristol: Norah Fry Centre for Disability Studies. http://www.bristol.ac.uk/media-library/sites/sps/leder/LeDeR%20programme%20annual%20report%2013.05.2021%20FINAL.pdf

[25] #107days of action to being about #JusticeforLB and all young dudes. https://107daysofaction.wordpress.com/

[26] Ryan S (2018). Justice for Laughing Boy. London: Jessica Kingsley.

[27] George Julian. Connor Sparrowhawk. https://www.georgejulian.co.uk/inquests/connor-sparrowhawk/ [A collection of blogposts, family statements, links and archive of live tweeting of Connor Sparrowhawk’s inquest]

[28] JusticeforLB. Conclusion of MTPS tribunal into Dr Valerie Murphy’s (un)fitness to practice. http://justiceforlb.org/conclusion-of-mpts-tribunal-into-dr-valerie-murphys-unfitness-to-practice/

[29] George Julian. Inquests. https://www.georgejulian.co.uk/inquests/

[30] Inquest. Now or never! Legal aid for inquests. https://www.inquest.org.uk/legal-aid-for-inquests

[31] Mazars (2015). Independent review of deaths of people with a learning disability or mental health problem in contact with Southern Health NHS Foundation Trust April 2011 to March 2015. London: Mazars. https://www.england.nhs.uk/south/wp-content/uploads/sites/6/2015/12/mazars-rep.pdf

[32] Care Quality Commission (2016). Learning, candour and accountability: A review of the way NHS trusts review and investigate the deaths of patients in England. London: CQC https://www.cqc.org.uk/sites/default/files/20161213-learning-candour-accountability-full-report.pdf

[33] George Julian. CQC Deaths Review. https://www.georgejulian.co.uk/other-work/cqc-deaths-review/

[34] Care Quality Commission (2019). Learning from deaths: A review of the first year of NHS trusts implementing the national guidance. London: CQC. https://www.cqc.org.uk/publications/themed-work/learning-deaths

[35] University of Bristol. The Learning Disabilities Mortality Review (LeDeR) programme at the University of Bristol 2015-2021. http://www.bristol.ac.uk/sps/leder/uob-2015-21/ 

[36] Runswick-Cole K (2015). Week 6: Committee, Inquiry, Report, Repeat… #107days. https://107daysofaction.wordpress.com/2015/04/30/week-6-committee-inquiry-report-repeat-107days/

[37] Tredgold AF (1914). Mental Deficiency (Amentia) (2^nd edn). London: Bailliere, Tindall and Cox