Sara Ryan is the Research Director in the Health Experiences Research Group at the University of Oxford. A sociologist, her work focuses on autism, learning disability and difference. More recently she has been involved in the #JusticeforLB campaign. This is an annotated audio recording of the keynote address she did at the 2016 Lancaster University Disabilities Studies conference.

justiceforlb.org

This is a talk about Connor Sparrowhawk, also known as Laughing Boy or LB for short. He was diagnosed with autism and epilepsy, and elected to a short term treatment centre. On 19th March 2013, LB was taken into the Slade House Assessment and Treatment Unit which is run by Southern Health NHS Foundation Trust. On the 4th of July 2013 he drowned in a bath there. It was an entirely preventable death.

Connor drowned in a NHS run facility and was run by an organisation called Southern Health, an NHS foundation trust. We have seen Southern Health on the news reasonably regularly as time has gone on. Connor was 18 years old. He was both treated as and killed by being perceived as a disposable human being with an inferior body and mind by health and social care. In our family he was Connor.

Too often the deaths of learning disabled people are too unremarkable and unremarked upon. They are often unworthy, even in investigation. Sara Ryan now reflects on the work which she does as an academic and what this work means. It took the best part of a year to get Connor into the news because learning disabled people don’t feature in the medias mind as people at all.

Disability remains for Connor a totalising and erasing identity and part of the work of Sara’s campaign is to stop that erasure and not make Connor and other people like him visible.

 

She asks whether any of the academic work which she has done over the last five years has led to any change, and when she looks at the blog she has written called ‘My Daft Life’ (mydaftlife.com) it has over 800,000 views and nearly 400 followers; it is apparently being used in teaching health and social care students and she has an email folder of messages describing what a difference it makes to parents, carers, siblings, grandparents, people who experienced bereavement, professionals and students in their practice and learning.

Here is a film about who Connor was…

In December 2015 through the “Independent review of deaths of people with a Learning Disability or Mental Health problem in contact with Southern Health NHS Foundation” report, it was revealed that less than 1% of the 337 premature deaths of learning disabled people that occurred in the care of one NHS Trust between 2011-2015 were investigated.

This report was developed as a review of all deaths of people in receipt of care between April 2011 and March 2015 from Mental Health and Learning Disability services in the Trust where Connor Sparrowhawk was failed. As a review it set out to establish the extent of unexpected deaths in Mental Health and Learning Disability services provided by the Trust and to identify themes, patterns or issues that need further investigation.

30% of all deaths in Adult Mental Health services received investigation and less than 1% of deaths in Learning Disability services were investigated, whereas only 0.3% of all deaths of Older People in Mental Health services were investigated.

 

In terms of deaths ‘categorised as unexpected’: within Adult Mental Health services, 60% (237 out of 394 ) of all unexpected deaths were investigated; in Learning Disability only 4% (4 out of 93) of all unexpected deaths were investigated and in Older Peoples’ Mental Health services 13% (30 out of 235) were investigated. The report revealed that there was no effective systematic management and oversight of the reporting of deaths and the investigations that follow.

Sara Ryans work highlights obligations under Article 2 of the Convention for the Protection of Human Rights and Fundamental Freedoms

“Article 2 – Right to life 1 Everyone’s right to life shall be protected by law. No one shall be deprived of his life intentionally sav e in the execution of a sentence of a court following his conviction of a crime for which this penalty is provided by law.

Deprivation of life shall not be regarded as inflicted in contravention of this article when it results from the use of force which is no more than absolutely necessary: a in defense of any person from unlawful violence; b in order to effect a lawful arrest or to prevent the escape of a person lawfully detained; c in action lawfully taken for the purpose of quelling a riot or insurrection.”

Despite the state’s obligations to the human rights conventions, that are particularly stringent when people deemed vulnerable are involved, it is apparent that the deaths of these patients are all too readily discounted. The work she is involved in calls for effective, prompt and diligent investigation of deaths where the right to life may have been breached.

In her presentation Sara reflects on the vast body of research which illustrates the disparity of treatment for learning disabled people and asks if anything has really achieved through the production of the research.

Making the point that “We know what we need to know” she points out the groundbreaking report created by Prof Jim Mansell in 1993. Despite this, “ignorance, prejudice and low expectations” around acceptable health and social care (both pre and post death) for learning disabled people continue to be perpetuated. People are still being denied their humanity , an imagined future and their lives.

Drawing on the #JusticeforLB campaign, Sara Ryan reflects on the boundaries which exist between ‘research’, academic practice and activism asking if we are too conformist and cosy within a disability studies ‘bubble’ of normative academic practice.

All is not well with the treatment and care that people are receiving who have a label of learning disability. Vital things are being highlighted in the research that has accrued…

Pauline Heslop and colleagues (Peter Blair, Peter Fleming, Matthew Hoghton, Anna Marriott, Lesley Russ) brought together a population based study to see what differences there are in life expectancy. It was published in The Lancet under the title “The Confidential Inquiry into premature deaths of people with intellectual disabilities in the UK: a population-based study”:

The study analysed the deaths of 247 people with learning disabilities over the age of 4 at the time of dying. The results suggested that male individuals with intellectual disabilities are dying 13 years earlier than those without a label; and correspondingly, female individuals die 20 years earlier.

They discuss contributory factors such as issues with advanced care planning, adherence to the Mental Capacity Act, living in inappropriate accommodation, adjustment of care as needs changed, and carers not feeling listened to. The authors say that although not all might be causally linked to each death they reviewed, what became obvious was that there were consistent patterns in findings suggesting that meaningful changes to practices can be made.

Also the paper suggests that “all parties involved in the provision of care and support to people with intellectual disabilities must examine problems with care and service provision as contributors to premature deaths; these factors can largely be ameliorated and are inherently unjust”. They made 18 recommendations in the publication.

In another study published in The British Journal of Psychiatry, Tatja Hirvikoski and colleagues (Ellenor Mittendorfer-Rutz, Marcus Boman, Henrik Larsson, Paul Lichtenstein, Sven Bölte) analysed “Premature mortality in autism spectrum disorder”.

They found that those labelled with autism are found to be dying 16 years earlier, and if they carry a second label of learning disability their life is shortened an average of 30 years.

 

The study was done on a nationwide population based set of data where they took the Swedish National Patient Register and the Cause of Death Register and linked them. Again, as in the previously mentioned study, the risk of death was discovered to be particularly high for females with a label of autism spectrum disorder.

In the study done by Gillber and colleagues (Billstedt, Sundh, Gillberg ), ‘Mortality in autism: a prospective longitudinal community-based study’ published in The Journal of Autism and Developmental Disorders, autism found in association with another medical disorder is correlated with a hugely increased risk of early death.

They found that people with autism were associated with the rate of 7.5% mortality (2.25 per 1,000 risk years) at ages 23 to 46 years old. This is approximately 5.6 times higher than expected in the general population. As well as this, they found that the increased risk they found was dramatically different from that reported in a Danish register study, which reported ‘‘only’’ a twofold risk increase.

A study published by Isager and colleagues (Mouridsen, Rich) with Sage Publications and The National Autistic Society they examined “Mortality and causes of death in pervasive developmental disorders”. Amongst their findings they showed that there was a distribution between natural causes and unnatural causes of death (i.e. accidents, suicide) which resembled patterns seen in the background population of adolescents and younger adults.

They followed 341 children with related pervasive developmental disorders for an average of 24 years. This work highlights that longitudinal follow-up studies of mixed groups of child and adolescents in psychiatric care have demonstrated higher than expected mortality compared with age and sex matched control populations.

They pointed out that studies by Kuperman et al. (1988), Larsen et al. (1990), de Chateau (1990) and Ostman (1991)  found that deaths from unnatural causes (suicides, accidents etc.) occurred about twice as frequently as expected, although there was no increase in death from natural courses. Reports of deaths in psychiatric populations have often shown excess mortality, particularly from suicide (Isager et al., 1985; Kuperman et al., 1988; Mortensen and Juel, 1993).

Mouridsen and colleagues followed up their own study with publishing “Mortality and causes of death in autism spectrum disorders: an update” (Autism 2008; 12: 403–14). Their objective was to update their previous work on the mortality correlates found in the national records of Danish people with autism spectrum disorders. Again they found that mortality amongst those with autism spectrum disorders was nearly twice that of the general population, and that it was particularly high in females.

They discuss that avoidable deaths possibly could be reduced by better training in acute care, making direct care staff understand about the risks and also suggest the monitoring of special incidents. They highlight that there needs to be an effort to better understand the risks of accidents and practices to reduce infectious disease. They also suggest that states or local authorities should assess staff competence on a regular basis.

Pickett et al (Paculdo, Shavelle, Strauss) published the study “1998–2002 update on causes of death in autism”. (J Autism Dev Disord 2006; 36: 287–8). This found that the overall standard mortality rate for males with autism was higher (2.3 compared with 1.7) but for females it was slightly lower (5.2 compared with 5.5).

Their work was focused in California and part of their investigation revealed that more than one third of the Special Incidence Reports (SIR) on deaths had insufficient information about the cause of death. As well as this they found that up to 10% of deaths were ‘undetermined’ (no cause found) even after autopsy.

Shavelle, Strauss and Pickett published “Causes of death in autism” (J Autism Dev Disord 2001; 31: 569–76). They found that the average standardized mortality rate was more than double that of the general population. As well as this they found that people with autism and epilepsy were found to have sudden, unexpected and unexplained death rates at nearly 24 times that found in the general population.

Here they highlight that the increased incidence and risk of sudden unexpected and unexplained death can only be fully understood with careful investigation post mortem and complete death narratives.

In a study by Bilder and colleagues (Botts, Smith,, Pimentel, Farley, Viskochil) they looked at “Excess mortality and causes of death in autism spectrum disorders: a follow up of the 1980s Utah/UCLA autism epidemiologic study” (J Autism Dev Disord 2013; 43: 1196–204). In their work they found that unlike findings in other studies the Utah sample they worked on showed relatively few deaths resulting from unnatural causes such as accidents and suicide.

They also found that a label of autism and/or learning disabilities complicates management of epilepsy recommending that it is essential that care be carefully coordinated amongst the individual’s caregiver, primary care provider, neurologist, and psychiatrist to minimize mortality as well as optimize health, functioning, and quality of life.