Neglect in the spotlight

Community Living 

Community Living

— Autumn 2026

Decades of rhetoric and reports have not stopped systemic abuse and premature deaths. Saba Salman reports on Reigniting Debate, which aims to look behind this lack of progress in so many areas

Cameron Richards from Dudley Voices for Choice shows a postcard of the design. Photo: Lucy Offley

“How long does it take to effect change? Some 45 years ago, the Ely Hospital Inquiry took place… recommendations were made… it seems to me that things are going at such a slow pace that we will be asking the same question again in 45 years’ time.”

These were the words of the late Ann Clwyd MP, spoken on 3 May 2016. The Labour MP was referring to the systemic abuse experienced by people with learning disabilities and the enduring and scandalous healthcare inequalities they face.

Amy taught me about diagnostic overshadowing, where symptoms are put down to a pre-existing condition so tests and treatments are missed

Ten years on, Clwyd’s observations are still horribly relevant, summing up how decades of rhetoric and reports have led to precious little action on the premature deaths of learning disabled people.

The timeline below, entitled Social Murder: Premature Deaths of Learning Disabled People, reflects half a century of words and no meaningful progress. It was shared at the Social Murder Festival at Manchester Metropolitan University (MMU) (see Social murder: the term says it all).

Embroidered textile showing UK life expectancy statistics for disabled people
Craftivism by George Julian, used on the covers of the timeline and its easy read version. Photo: George Julian

The timeline was produced as part of research project Reigniting Debate, which looked at why there has been so little change for people in mainstream areas such as jobs, homes, health and social care.

Reigniting Debate, part funded by the National Institute for Health and Care Research School for Social Care Research, involved researchers from MMU and Bristol and Sheffield universities, working with self-advocacy organisations Sunderland People First and My Life My Choice and parents and carers at non-profit advocacy project Bringing Us Together.

In the past two decades alone, publications highlighting healthcare failures have included the 2006 Disability Rights Commission publication Equal Treatment: Closing the Gap, Mencap’s Death by Indifference review in 2007, 2008’s Joint Committee on Human Rights’ A Life Like Any Other? Human Rights of Adults with Learning Disabilities and, that same year, Sir Jonathan Michael’s Healthcare for All: Report of the Independent Inquiry into Access to Healthcare for People with Learning Disabilities.

In 2013, the Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD) was published by University of Bristol researchers. This led to a non-mandatory review process for learning from the lives and deaths of learning disabled people being established.

The first Learning from Lives and Deaths – People with a Learning Disability and Autistic People (LeDeR) report was issued in December 2017; there have been seven reports since – fewer than one a year.

None of these reviews, reports and words spoken in the Houses of Parliament has led to any meaningful change or improvement in life expectancy.

Social Murder: A Parliamentary Timeline, 1969–2020

For more than fifty years, ministers, MPs and peers have stood up in Parliament to describe the same problem: people with learning disabilities dying preventable deaths, and health and social care failing, again and again, to fix it. This timeline collects those moments in their own words, in the order they were spoken, so the pattern is hard to miss.

Download the PDF timeline (190kb): Social Murder - Parliamentary timeline

1960s

  1. 1969Ely Hospital, Cardiff

    “The problems arise mainly in hospitals for the subnormal precisely because there is so much less that one can actually do in cure. There is not so much incentive in that sense for good doctors to be in such hospitals.”

    Richard Crossman, Secretary of State for Social Services,

1970s

  1. 1971Farleigh Hospital Inquiry

    “The three other recommendations are of a general nature. One concerns the reporting of deaths to coroners … referred this recommendation to the Committee on Death Certification and Coroners for consideration in the context of their wider remit.”

    Keith Joseph, Secretary of State for Social Services,

  2. 1978Normansfield Inquiry Report

    “The trouble is, the report makes it clear, that many people knew just what the position was. Some of them were in positions of authority with power to act, but they failed to act. The lesson from this is clear: that those who hold positions of authority really must accept the responsibility.”

    David Ennals, Secretary of State for Social Services,

1980s

  1. 1981Silent Minority film aired

    “As I watched that film I could not help thinking that if this Bill had been on the statute book and implemented 20, 30, 40 or 50 years ago many of the sad scenes one saw in that film would not have been as they were portrayed.”

    Lord Renton,

  2. 1981Disabled Persons

    “From time to time there is a tremendous outcry about the conditions of mentally handicapped people, but it dies down very quickly. It all seems to run into the sand.”

    Jack Ashley MP,

  3. 1988The Mentally Ill and Handicapped

    “On the one hand, there are public statements suggesting that mental illness and mental handicap are priority services and have been so for years and years. On the other, we have a situation of appalling human neglect, of which this House really must take urgent notice.”

    Lord Ennals,

2000s

  1. 2002Learning Disability White Paper

    “Health improvement plans provide a means of addressing the health needs of people with learning disabilities so that they do not experience avoidable illness and premature death.”

    Jacqui Smith, Minister of State, Department of Health,

  2. 2005Disability Discrimination Bill

    “Learning disabled people still experience institutional discrimination when they interact with public services. The health sector is no different.”

    Baroness Hollis, Parliamentary Under-Secretary of State, Department for Work and Pensions,

    “Research shows that preventable mortality for people with a learning disability is four times that of the population at large … There is no doubt that the NHS systematically fails people with a learning disability.”

    Lord Rix,

  3. 2007Patient Safety

    “The health inequalities of people with a learning disability have been well known for many years.”

    Roger Berry MP,

    “Ensuring that the NHS, at every level, takes its responsibilities to treat people with learning disabilities as it would treat any other patient is a top priority. That is non-negotiable.”

    Ivan Lewis, Parliamentary Under-Secretary of State for Health,

  4. 2008Disability Rights

    “The health inequalities faced by people with a learning disability is another crucial issue on which the Government must make progress.”

    Lord Rix,

    “I am confident that we can transform the way in which the NHS responds to the needs of people with learning disabilities, and ensure that all NHS staff understand individuals, their needs and how to deliver the best possible health care and outcomes. It is unacceptable for any trained health professional not to discharge their responsibilities for the care of any patient in the NHS.”

    Dawn Primarolo, Minister of State, Department of Health,

  5. 2009Adults with Learning Disabilities

    “The hard evidence that people with learning disabilities face stark health inequalities is simply overwhelming.”

    John Barrett MP,

    “Preventable deaths of people with learning disabilities are unacceptable.”

    Phil Hope, Minister of State, Department of Health,

2010s

  1. 2010People with Learning Disabilities (NHS Treatment)

    “Will the Minister tell us what progress the Department of Health has made in achieving equality of provision in health services for people with learning disabilities?”

    Barbara Keeley MP,

    “We should not forget that although the right of people with learning disabilities to experience equality in health care provision is a profoundly moral one, it is also a legal requirement under the Disability Discrimination Act 2005, the Human Rights Act 1998 and the Mental Capacity Act 2005.”

    Tom Clarke MP,

  2. 2013People with Learning Disabilities: Health Inequalities

    “The institutional discrimination and health inequalities suffered by people with learning disabilities come as little surprise to many of us … I found that adults with a learning disability were 58 times more likely to die before the age of 50 than the general population.”

    Baroness Hollins,

    “We know a great deal about the problem and we cannot continue to allow one group of people, those with learning disabilities, to experience such drastic healthcare inequality.”

    Lord Hunt of Kings Heath,

  3. 2014People with Learning Disabilities

    “Even when all the other factors have been taken into account, the disparity in mortality between people with and without learning difficulties is alarming. There does not appear to have been any significant change in this disparity over the past decade or more. The statistics speak for themselves.”

    Lord Bishop of Carlisle,

    “People with a learning disability have suffered second-rate healthcare for far too long, resulting in premature and painful deaths.”

    Lord Rix,

    “As the confidential inquiry team noted, optimism that lessons had been learnt from past reviews was quashed during its work, which showed that the same issues are resurfacing, which is simply unacceptable.”

    Lord Adebowale,

  4. 2016Southern Health NHSFT, Urgent Question

    “It is vital that we take the issue of avoidable mortality as seriously for people with learning disabilities and mental health problems as we do for other members of our society.”

    Alistair Burt, Minister for Community and Social Care,

  5. 2016Southern Health NHS Foundation Trust

    “What worries me most, I have said this to families in private and I say it again here, is that I hear the same things again and again.”

    Alistair Burt, Minister for Community and Social Care,

  6. 2016Learning Disability: Premature Deaths

    “More than three times the number of people with learning disabilities in England die each year than would be expected from general population mortality rates, after allowing for their age and gender profile. Why is this proving so difficult to change?”

    Baroness Hollins,

  7. 2018Learning Disabilities Mortality Review

    “Seven years after Winterbourne View and five years since the avoidable death of Connor Sparrowhawk, the findings of the review show a much worse picture than previous reports about the early deaths of people with learning disabilities.”

    Barbara Keeley MP,

  8. 2019People with Learning Disabilities

    “Does the Minister accept that we are tolerating widespread human rights abuses? Surely families want not another review but action to protect their loved ones.”

    Baroness Thornton,

2020s

  1. 2020Health: Learning Disability and Autism Training

    “We can all imagine how we would feel if we were told that we might expect to live much shorter lives for reasons that could quite easily be counteracted.”

    Lord Wigley,

  2. 2020Covid-19: Effect on People with Learning Disabilities

    “Could the Minister tell us … how the actions she is taking to reduce the disproportionate impact of death rates for those with learning disabilities is being addressed with facts, so that we can see the progress that the actions of her Department have led to, given the number of deaths in the second wave?”

    Rushanara Ali MP,

Source: Hansard, UK Parliament.

More like this