Monthly Archives: June 2019

Poor Health and early death – What is Going ON?

In the week we celebrate Learning Disability Pride, I’m wondering why so many people with learning disabilities die too early.

The twenty first century has seen lots of reports on the way the health system treats people with learning disabilities, far less action, and still far too many people dying when they shouldn’t. What’s going on?

First the Reports. Here’s the list.

Year Key milestones critical of mainstream health care
2001 Valuing People White Paper

Government recognised that health care needs of people with learning disabilities often unmet and pledged to ‘ensure that people with learning disabilities have the same right of access to mainstream health services as the rest of the population.’

2004 Treat me right!

Mencap report highlighted inequalities in healthcare for people with learning disabilities.

2006 Equal treatment: Closing the gap[1]

Disability Rights Commission highlighted unacceptable levels of healthcare, leading in some instances to early death, received by people with learning disabilities.

2007 Death by Indifference

Mencap report on six people’s premature deaths, linked to systemic NHS failings.

2008 The Michael Report[2]

An independent inquiry set up in response to Death by Indifference. Stated that people with learning disabilities have ‘significantly worse health than others’. Critical of NHS treatment of people with learning disabilities. Recommended: a Public Health Observatory focused on their health of people with learning disabilities; Annual GP Health Checks; a Confidential Inquiry investigating their premature deaths.

2009 Valuing People Now

Government White paper expressed continuing concerns about the health of people with learning disabilities, stating that their ‘access to the NHS is often poor’.

2010 Improving Health and Lives Learning Disabilities Observatory

Set up to monitor both the health and healthcare of people with learning disabilities; absorbed into Public Health England in 2018.

2012 Death by Indifference: 74 deaths and counting: A progress report 5 years on.

Mencap report on continuing NHS failings, resulting particularly in premature deaths.

2013 Report of the Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD)[3]

A three year investigation exposed widespread critical failings of NHS healthcare provision towards people with learning difficulties.

2015 Mazars Report[4]

Documented a failure to investigate ‘unexpected deaths’ of people with learning disabilities in a large NHS Trust

2016 Care Quality Commission: Learning, candour and accountability [5]

Reported that failure to investigate ‘unexpected deaths’ was widespread in NHS

2017           Learning Disabilities Mortality Review

Sets out to learn from premature deaths and transfer the learning to other settings

2018 Learning Disabilities Mortality Review Report (LEDER) 2016/7 found that 58 was the average age of death[6]
2019  

Although there were beacons of excellent practice cited in many of these reports, broadly speaking, the findings were:

The health care offered to many people with learning disabilities is of unacceptably poor quality

People on average die over 20 years earlier than other people – average age of death reckoned in 2018 to be 58.

Many premature deaths are not investigated as they should be.

Factors which appear to contribute to these appalling outcomes were identified as:

  • Poor communication.
  • Failure to heed family members and others who know the person well
  • Failure to adjust systems and communications methods to take account of poor literacy, lack of access to transport and other disadvantages experienced by people with learning disabilities
  • Failure to take notice of documentation, like health passports, which seek to explain the person’s healthcare needs
  • Inadequate training of health professionals

Although not spelt out in so many words, there are hints that the attitudes of many professionals are that the lives of people with learning disabilities do not much matter. How else to explain the comment ‘of course we won’t operate if she deteriorates’ made by the charming registrar to my friend recently, regarding his sister with Downs Syndrome?

Much hand wringing, then, but far less action, and that has been relatively ineffective. Annual Health checks were introduced in response to the 2008 Report by Sir Jonathan Michael. The latest figures show that only about 50 % of those who should get them do get them. Furthermore, these checks are often cursory according to people with learning disabilities I’ve spoken to.

Liaison nurses in hospitals – but only some hospitals and only some of the time.

The Learning Disabilities Observatory – did great work, but now dismantled.

Commitments to mandatory training in learning disabilities and autism following the tragic and unnecessary death of young Oliver McGowan – now bogged down in procedural issues.

Health Passports – but too often ignored.

Too little, too late, no sense of urgency despite the heroic efforts of families and journalists. Is this just another symptom of the decline of the British state. Or is there more to it?

As a historian, I look back. What is striking is that, disappointing as is the response, for the first time a spotlight has been shone on these failings. This is unprecedented. Abuse, yes, that was called out in official reports into Ely, Farleigh Backwell, South Ockendon, Normansfield and many other learning disability hospitals in the 1960s and 1970s. But premature death, although I strongly suspect it was widespread, was never the subject of investigation. Put Away, Pauline Morris’s forensic examination of learning disability hospitals published in 1969 makes no mention. A note in the official Ely inquiry (1967) to the effect that the very sudden death of a young adult patient was not investigated was never followed up.

I recall my own acceptance that people with learning disabilities just die earlier than the rest of us, for some unspecified reason associated with the impairment. Diagnostic overshadowing in my own head.

I can’t help thinking that we are skirting a very unpleasant eugenic iceberg here, that some lives matter less than others. Practice around abortion is the example I’ll use.

A woman’s right to choose whether to continue with her pregnancy is accepted within mainstream opinion and law, even if there are those who for religious or personal reasons do not wish to apply it to themselves. Most people in Britain would not argue with it.

However, if the only reason to terminate a pregnancy is because the foetus has been diagnosed disabled, this raises ethical issues that are too frequently avoided.

In any individual case, for a set of reasons, a woman might decide to terminate – e.g. the baby born at term would have a condition that would cause it great suffering. The critical point is that widespread and unquestioning acceptance of termination because an impairment has been detected runs the risk of contributing to the devaluing of disabled lives generally.  In utero, a Downs foetus can be terminated just because it is Downs, despite proclamations of equal rights in policy documents and UN Convention.

My point here is that abortion of disabled foetuses without question lends itself to the view that giving birth to a disabled child is a tragedy, and the family deserving of pity (though not the resources needed to make their lives meaningful and enjoyable). A sign that, whatever the rhetoric, these are people whose lives are less valued. Does this help explain the readiness of some doctors to make Do Not Resuscitate decisions when a person with a learning disability is the patient?

The late Wolf Wolfensberger, American architect of normalisation and social role valorisation, argued back in the 1980s that learning disabilities services are ‘death-making’, and that the slippery eugenic slope began with the abortion of disabled foetuses. At the time, I dismissed this as fantasy. Now I’m not so sure.

Why raise such a disturbing subject? Until we name the enemy, we are boxing shadows, putting faith in training and communication, when a more deep rooted debate about reversing the widespread devaluing of people with learning disabilities is what we need.

My heartfelt thanks to Clare Palmer and Sam Clark for invaluable comments on this Blog.

[1] Disability Rights Commission (2006). Equal treatment: Closing the Gap. A formal investigation into the physical health inequalities experienced by people with learning disabilities and/or mental health problems.

[2] Michael, J. (2008) op. cit.

[3] Heslop, P., Blair, P., Fleming, P., Hoghton, M., Marriott, A., Russ, L. (2013) Confidential Inquiry into the premature deaths of people with learning disabilities. Improving Health and Lives: Confidential Enquiry; University of Bristol; Department of Health.   http://www.bris.ac.uk/cipold/

[4] Mazars (2015) Independent Review of deaths of people with learning disabilities or mental health problems in contact with Southern Health NHS Foundation Trust April 2011- March 2014 available on https://www.england.nhs.uk/south/wp-content/uploads/sites/6/2015/12/mazars-rep.pdf

[5] Care Quality Commission (CQC) (December 2016) ‘Learning, candor and accountability: a review of the way NHS trusts review and investigate the deaths of patients in England’. London CQC

[6] http://www.bristol.ac.uk/sps/news/2018/leder-report.html

I’m writing this blog to introduce our new edited book Transnational Perspectives on the History of Learning / Intellectual Disabilities in the twentieth century. Click on this link to see the rather striking cover Intellectual_Disabilities_v3[10106].

Co-edited by me, and the brilliant Simon Jarrett, it contains chapters from authors in 12 different countries, as varied as USA and Taiwan, Australia and Ghana. All use life stories to illustrate the real life impact of different policies and practices on people.

Until this book, only the Anglosphere, Scandinavia and German speaking countries had even a tiny history industry. The history of learning disability, much neglected even in the west, had barely a flicker of life elsewhere. Use of life stories as a means of understanding the experiences of people with learning disabilities and their families, well established in USA, UK, Canada and Australasia for 50 years, was quite new to authors in other parts of the world. It’s been gratifying that the task of writing for this book has prompted 2 contributors to do more work on life stories in their own countries.

It’s been an amazing experience to edit this book. Exciting to discover that in interwar Czechoslovakia there were incredibly progressive policies. That in the Communist bloc, people with mild learning disabilities were welcomed as equal citizens, part of the workforce, but those who were not able to be productively employed were held in abysmal conditions. To learn that in both Hong Kong and in the UK the 1990s saw a high point of progressive, optimistic policies, with a falling back, both in resources allocated and in vision of a better life, in the twenty first century.

What has been strange and sad is the discovery that across cultures, people with intellectual disabilities tend to be excluded and looked down upon. This cannot always be blamed on eugenics, though that was incredibly influential in Europe, USA and Australasia. A combination of economic anxieties intertwined with traditional belief systems were powerful influences in both Taiwan and Ghana.

More positively, in every chapter, the importance of families. In several countries – Taiwan, Ghana, Hong Kong – learning disability was largely left to families until the closing years of the twentieth century. In Greece and Hungary this was true into the mid century. Even in those countries most influenced by the USA – UK, Australia, New Zealand – families have remained the bedrock of support. And, more striking still, it has been that everywhere families have been at the forefront of agitation for a better life, closure of institutions, support for lives in the community. In some places at some times it took a great deal of courage to stand up for a disabled child, not only in Nazi dominated Austria, but also in Czechoslovakia, Taiwan and Hong Kong.

The language issue loomed large for us as editors. In Ghana, because disability was largely managed within families and rural communities, learning disability lacked a name until recently.  In Hungarian and Mandarin Chinese the preferred ‘people first’ construction ‘people with a …’ is just not possible. In Ghana, people with Downs are labelled as ‘nsuoba’, meaning spirit or water children. Does language matter so much? It’s pretty difficult to research the history of learning disability without labels. A feeble reason to have them, maybe. And there are neo-colonial overtones to the debates about language, with terms regarded as ‘progressive’ usually originating in English or German speaking counties.

This brings me onto the United Nations Convention on the Rights of People with Disabilities. This highly aspirational document is hard to square with the very varied sets of assumptions about learning disabilities revealed by the collection of chapters in the book. Is it, I wonder, an imposition of Western assumptions onto the world. Not the first time, it’s happened.

This is, we hope, not the last word on transnational histories, rather a tentative beginning. Missing are some really important narratives, from China, India, South America, Russia, Central Asia, not to mention places much nearer home, like Ireland, France, Spain. It really matters that we recognise the different experiences of people with learning disabilities and their families over time. If you don’t know where you have been, it is hard to chart a course for the future. Certainly we have learnt a lot from editing this book. We’re very proud of it, and the fantastic authors who made it possible.

The book is not cheap – regrettably. £75. It’s also an ebook available on kindle for £26.99. Policy Press is the publisher, AND we have a 20% discount currently. Use this link to get it.

policy.bristoluniversitypress.co.uk/intellectual-disability-in-the-twentieth-century