Chris Hatton argues that little has changed since the days of the asylums

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.

It feels as if there is a great iceberg of indifference. Bereaved family members and media scrutiny occasionally manage to push the deaths of people with learning disabilities to the surface – despite obstruction or worse. 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. To give some sense of the rates, one in nine people living in institutions run by the Metropolitan Asylums Board, which cared for London’s sick and poor between 1867-1930, died in 1914. In 1918 the rate increased to over one in four dying in asylums, partly because of a previous pandemic, the Spanish Flu. Fifty years later, an inquiry investigated allegations of ill-treatment of people with learning disabilities at Ely Hospital, Cardiff, in 1969. Little appeared to have changed:

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

However, this inquiry and other similar ones looking at abuse in institutions did not result in major government policy change, or indeed much attention to the deaths of people with learning disabilities until a comprehensive strategy, Valuing People Now, was published in 2009. 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[1], and the consequences of health service discrimination on people’s deaths, followed by the government setting up an “independent inquiry into access to healthcare for people with learning disabilities”[2]. There has been nothing further since.

Since then, the language of health inequalities and premature deaths has become commonplace in repeated reviews by different agencies and regulators, inquiries[3] [4], policy statements and government responses to the stubborn grim realities that keep on surfacing. At this surface level, the talk is of deep concern, unwavering commitment and continuous incremental progress.

The real picture is far more patchy. While there have been some positive changes in specific health programmes, such as flu jabs and health checks[5], the evidence we have tells us that improvements in healthcare for people with learning disabilities have stalled. The 20-year gap in the age at which people with learning disabilities die, compared to other people, is not closing. It may be even be starting to widen. The institutional discrimination resulting in people’s deaths continues unabated, with people with learning disabilities three times more likely to die from an avoidable medical cause of death compared to other people[6].

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 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[7], which was replicated throughout Connor’s inquest and in the subsequent fitness to practice tribunal of the lead psychiatrist on the unit[8].

Open Justice live tweeting of inquests of people with learning disabilities who have died reveal the brutal reality of how inquests are conducted, with health and social care services often arming themselves with confrontational lawyers, paid for with public money. Families currently have to pay for their own legal representation and are told that the process is not adversarial. 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, including dangerous drug combinations, obesity or dental neglect; 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 the investigative firm Mazars, commissioned to inquire 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[9]. The Mazars 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[10], yet its final recommendations did not do justice to what families told the review and has not resulted in fundamental improvements[11].

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[12]. 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. Who runs the LeDeR programme and how it operates has recently changed, making its future effectiveness uncertain.

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[13].

In 1914 the influential psychiatrist and eugenicist, Alfred Tredgold wrote: “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.” He wrote this justification when half of all the people resident in the institution he oversaw died between the ages of 15 and 19. Can we really say that Tredgold’s opinion, that the life of a person with a disability, is of less worth, isn’t shared by many today?

Chris Hatton, Professor of Social Care, Manchester Metropolitan University

Chris has been involved in research with people with learning disabilities for over 30 years. Most of his work tries to document and understand the inequalities that people with learning disabilities face, and to use this evidence to support people who can make a difference.

[1] 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

[2] 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

[3] 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

[4] 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

[5] 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

[6] 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

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

[8] 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/

[9] 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

[10] 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

[11] 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

[12] 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/

[13] 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/