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 21st 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 2nd 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) (2nd edn). London:
Bailliere, Tindall and Cox