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?

 

 

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[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

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

On the day (19^th 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 8^th 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 11^th 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 (19^th 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?

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[1] https://www.medrxiv.org/content/10.1101/2021.03.08.21253112v1

https://www.medrxiv.org/content/10.1101/2021.02.08.21250525v1

https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.12914

https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/articles/coronaviruscovid19relateddeathsbydisabilitystatusenglandandwales/24januaryto20november2020

https://www.gov.uk/government/publications/covid-19-deaths-of-people-with-learning-disabilities

http://www.bristol.ac.uk/media-library/sites/sps/leder/LeDeR%20programme%20annual%20report%2013.05.2021%20FINAL.pdf

 

 

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