It's institutional disablism - deal with it

Today saw the publication of a landmark study by Australian academics Julian Trollor, Preeyaporn Srasuebkul, Han Xu and Sophie Howlett on deaths amongst a cohort of 19,362 people with learning (intellectual) disabilities in New South Wales, Australia. Their findings are in BMJ Open here, and are free to download and read. This article in the Sydney Morning Herald is also a really good summary, and there is an easy read summary here.

Their findings are depressingly familiar. The median age of death (the age at which half of all deaths had occurred) for people with learning disabilities was 54 years (55 years for boys/men; 52 years for girls/women). This was 27 years younger than the median age of death of 81 years reported for the rest of the population. Over three-quarters of the deaths of people with learning disabilities (76%) occurred before the age of 65, compared to just 18% of the deaths of other people. Adults with learning disabilities aged 20-44 were four times more likely to die than the rest of the population of the same age.

The researchers also used death certificates to investigate what had been recorded as the causes of death for people with and without learning disabilities. The most common underlying causes of death for people with learning disabilities were respiratory system illnesses (often infections; 20% of people), problems with the circulatory disease (such as strokes, 18% of people), cancers (18% of people), nervous system problems (such as epilepsy, 13% of people), and injury/poisoning (6% of people).

The researchers concluded that over a third of deaths of people with learning disabilities (38%) were potentially avoidable, meaning that health services could have done something to prevent the health problem developing and/or stop the death from happening. This compares to 17% of the deaths of the rest of the population being classed as avoidable. One shocking detail in the paper is that when they first looked at the death certificates of the people with learning disabilities, the main cause of death on the certificate had been recorded as the person’s learning disability itself on 16% of the certificates (102 out of 637 where certificates were available) – so for 49 people their main cause of death was recorded as ‘Down syndrome’. This isn’t even taking into account the 13% of people (95 people) with learning disabilities where the researchers couldn’t find any record of cause of death at all.

Why did I write that these findings are depressingly familiar? Because similar findings have been found in other countries, wherever people have looked. In England (see Chapter 3 here for a free recent summary), the median age of death for people with learning disabilities is 13-20 years younger for men and 20-26 years younger for women compared to the general population, with the gap in life expectancy not closing over time. There are consistent gaps in age of death for people with learning disabilities compared to the general population reported in the USA, Canada, Ireland and Germany, with some variation in just how yawning the gaps are.

The most common causes of death of people with learning disabilities are also similar across countries, and people with learning disabilities are more likely to die potentially avoidable deaths. For example, in England nearly half of the deaths of people with learning disabilities (49%) were avoidable, compared to just under a quarter (24%) of the deaths of the general population. The recording of a person’s learning disability as a cause of death on death certificates has also been reported in the USA and the UK.

In England, in large part due to the #JusticeforLB campaign and other campaigners, health service ‘regulators’ have begun to pay reluctant attention to the deaths of people with learning disabilities within health services, and how health services do or don’t investigate people’s deaths. The shocking report by Mazars into how Southern Health NHS Foundation Trust (the health service where LB died) determinedly and repeatedly didn’t investigate the deaths of people with learning disabilities who died in their ‘care’ laid out just how a health organisation can operate in ways to deny reality and systematically denigrate anyone who tries to bring a dose of reality to their proceedings.

One of the broader health service institutional ‘responses’ to this report was a piece of work by one of England’s health service regulators, the Care Quality Commission, looking at how health services investigated the deaths of people with learning disabilities and/or mental health issues. This resulted in the report Learning, Candour and Accountability published in December 2016. Over time I more and more have the sensation of being shocked but not surprised at these kinds of reports. The CQC summarised the main findings like this: “We weren’t able to identify any trust that demonstrated good practice across all aspects of identifying, reviewing and investigating deaths, and ensuring that learning is implemented”. More specifically:

• “We found that families and carers often have a poor experience of reviews and investigations, and are not always treated with kindness, respect and sensitivity.”
•  “We found inconsistency in the way organisations become aware of the deaths of people in their care, with no clear systems for a provider that identifies a death to tell commissioners or other providers involved in the person's care.”
•  “Healthcare staff use the Serious Incident Framework to help them decide whether a review or investigation is needed. But this can mean investigations only happen if a serious incident has been reported, and the criteria for deciding to report an incident and the application of the framework both vary.”
•  “The quality of investigations is often poor and methods set out in the Serious Incident Framework aren't applied consistently. Specialised training and support aren't given to all staff carrying out investigations. There are problems with the timeliness of investigations and confusion about standards and timelines set out in the guidance.”
•  “There are no consistent frameworks or guidance requiring boards to keep all deaths under review, and boards only receive limited information about the deaths of people using their services. When they do receive information, they often don't challenge the data effectively. Where investigations take place, there are no consistent systems to make sure recommendations are acted on or learning is shared.”

So, despite national frameworks and guidance on investigating and reporting deaths, and a generally high national profile on candour and accountability since the Francis report into mid-Staffs, the entire health service and regulatory system operates in a way that makes the deaths of people with learning disabilities invisible and unaccountable. And these aren’t random variations in practices where there is uncertainty about what to do; they are practices heavily weighted towards the extremely shoddy end when it comes to the deaths of people with learning disabilities.

Isn’t this surely a basic, convincingly evidenced indicator of systemic institutional disablism? I’m using this phrase as analogous to the phrase ‘institutional racism’ used by Sir William McPherson in his judicial inquiry into the death of Stephen Lawrence. Institutional racism was defined in the inquiry as:

“The collective failure of an organisation to provide an appropriate and professional service to people because of their colour, culture, or ethnic origin. It can be seen or detected in processes, attitudes and behaviour which amount to discrimination through unwitting prejudice, ignorance, thoughtlessness and racist stereotyping which disadvantage minority ethnic people”.

Within the wide array of health services in England (and likely in other places too, given the international similarities in evidence concerning the health inequities experienced by people with learning disabilities), isn’t this what we’re seeing when it comes to people with learning disabilities? (I’m fairly certain similar arguments could and probably have been made with respect to other groups of people, such as people with mental health issues, other groups of disabled people, or older people with dementia). I’ve added ‘systemic’ because it’s not a single organisation, and I'm aware there are issues around the use of 'disabilities' rather than 'impairments' that need more careful thinking through:

Systemic institutional disablism is the collective failure of organisations to provide an appropriate and professional service to people because of their learning disability. It can be seen or detected in processes, attitudes and behaviour which amount to discrimination through unwitting prejudice, ignorance, thoughtlessness and stereotyping which disadvantage people with learning disabilities.

So, systemic institutional disablism isn’t only actions and behaviours that are overtly discriminatory , although as the news report of the Australian study, the Confidential Inquiry in England, and any number of the experiences of people with learning disabilities and their families show, some health professionals seemingly don’t have a problem expressing overt discrimination. Institutional discrimination can be unconscious, and can be tracked through its systematic effects on the treatment (or otherwise) of people with learning disabilities. A quick random list of evidence for systemic institutional discrimination of the health system concerning people with learning disabilities (these are for England, but there is evidence for some of these in other countries too):

• People with learning disabilities often aren’t identified as such within mainstream hospital services, making it difficult to monitor the presence or absence of discrimination in how people are treated.
• Although primary care general practitioners in England have been financially incentivised for some years to provide annual health checks for people with learning disabilities, only about half of people with learning disabilities actually get a health check.
• People with learning disabilities experience lower rates of screening for all cancers compared to people without learning disabilities.
• People with learning disabilities experience delays in the identification and treatment of health problems.
• People with learning disabilities living in community settings are far, far more likely to be prescribed antipsychotic medication in the absence of a relevant diagnosis than people without learning disabilities.
• People with learning disabilities are more likely than other people to experience emergency admissions to hospital for health problems such as constipation that, if well-managed, shouldn’t result in the person needing to go to hospital at all.
• Reasonable adjustments to hospital services for people with learning disabilities are not consistently or reliably provided.
• Despite five years of government policy, the number of people with learning disabilities in inpatient services is not reducing, and whilst in inpatient services people with learning disabilities are highly likely to be prescribed antipsychotic and tranquilising medication, and experience physical restraint, seclusion, and physical assault.
• People with learning disabilities die much younger than other people, where a much higher proportion of their deaths are potentially avoidable.
• Deaths of people with learning disabilities in health settings are extremely unlikely to be properly investigated.
• People with learning disabilities are much less likely to be involved in research about effective health interventions.

Does it matter if we call this out as systemic institutional disablism? I think it does. One of the things that disappointed me about the CQC Learning, Candour and Accountability report is that it identified the issues very clearly, but couched its recommendations in terms of technical changes to systems, on the assumption that systemic poor practice is a function of professional lack of knowledge, inattention and honest confusion. In England there have also been multiple initiatives to improve various aspects of healthcare for people with learning disabilities, all operating on similar assumptions.

But I think there is something crucial missing. Professionals within health systems have had sufficient evidence for some now – ignorance and inattention can no longer be used as reasons/excuses – indeed they can be seen as further signs of institutional disablism. As can be seen from the Home Affairs Committee report into McPherson – 10 years on, the term institutional racism was resisted by many in the police and has been the cause of deep discomfort. Progress in response to the McPherson inquiry has also been patchy and uneven. But this discomfort, self-questioning, and willingness to see the systemic whole in terms of institutional disablism is urgently needed if health services are to achieve any much-vaunted step changes in how people with learning disabilities and their families are treated. Isn’t seeing the problem the first step?