Lives too short

How aware are we about deaths of people with learning disabilities?

Last week was Learning Disability Week, which gave me a chance to reflect on how aware (or unaware) we are about the deaths of people with learning disabilities. Perhaps not top of everyone’s list of awareness-raising topics, but a very important one none the less.

We tend to pay a great deal of attention to knowing the top causes of death in the population (dementia and Alzheimer’s disease in England and Wales in 2015, accounting for 11.6% of all deaths), and the number of deaths each year from particular causes (such as road traffic accidents causing 1,732 deaths in 2015).

But do we know how many of these deaths are of people with learning disabilities? No. Do we know if the most common causes of death are the same in people with learning disabilities as in the general population? Well, almost. And does this matter? Yes, certainly.

We need to know the number and cause of deaths in order to design effective public health policies or measure their impact. By knowing that dementia and Alzheimer’s disease became the most common cause of death in 2015, we can plan for the needs of those with the disease and allocate health and care resources accordingly, such as ensuring that there is a skilled workforce available to support people with the condition. It may also be the case that we could identify targets for health and service improvement strategies by knowing that in 2015, mortality rates for respiratory diseases (including flu) increased notably compared with the previous year. And by looking at the number and causes of death over time, we can see important changes in the health of a population and assess the impact of initiatives to improve their health and wellbeing, such as smoking cessation programmes or cancer screening.

Understanding the age and cause of death can also tell us a lot about the inequalities that certain groups in the population may experience. Back in the 1850s William Farr used mortality data to stimulate debate about why some cities were less healthy than others. It is only now, more than 150 years later, that we are starting to explore such inequalities in relation to people with learning disabilities.

The Equality Act 2010 incorporated the public sector Equality Duty which requires public bodies to consider all individuals when carrying out their day-to-day work – including in shaping policy and in delivering services. So how does this square up with our understanding about deaths of people with learning disabilities? Well, it’s a work in progress…still.

At a population level, we know more about the deaths of people with learning disabilities than we ever have. We know that in England people with learning disabilities die approximately 20 years sooner than people without learning disabilities. And we know that people with learning disabilities are about three times as likely to die from causes of death that could have been treated by good quality care, compared with people in the general population.  From the information we have, there is clear evidence that inequalities in health, and care provision, are leading to premature deaths in people with learning disabilities. Fuller evidence is needed urgently – and by linking registers of people with learning disabilities held by GPs to national mortality data we would have information about deaths of people with learning disabilities on a par with information about deaths of the general population. But that, it seems, is not to be. The lack of population level information about deaths of people with learning disabilities was identified as problematic by the Department of Health and NHS England back in 2013, but has not yet been fully resolved.

We are making progress at individual-level reviews of deaths. The national Learning Disabilities Mortality Review (LeDeR) programme, funded by NHS England, is now supporting local areas to review the deaths of people with learning disabilities and by the end of 2017 the programme will be covering the whole of England.   Such individual-level reviews can help us to pinpoint any potentially modifiable, contributory factors that may be involved in a person’s death, and address any quality of care concerns. They can also help us to identify examples of best practice that help to protect people with learning disabilities from premature deaths.

But are we really any good at learning from deaths? Again, there is much room for improvement. We need to ensure that individual-level reviews of deaths include the views of all of those involved in supporting the person who has died, especially their family and others who knew them best, and that all contributions are valued and incorporated. We need to be honest in our reflections about how we, and the systems we have set up and work within, have the potential to fail people with learning disabilities. We need to learn from our actions and those of others, and have the courage to disrupt in order to bring about change where change is needed. And we need to keep an eye on the impact of those changes and make sure that effective change is embedded and future-proofed, and its impact assessed.

So how aware are you about the deaths of people with learning disabilities? What have you done to identify and reduce early deaths of people with learning disabilities using your services? Are you LeDeR ready? And how can people with learning disabilities currently using your services be sure that they will not be one of those people with learning disabilities who die from a cause of death that could have been treated by good quality care? Awareness-raising can be uncomfortable, but when it contributes to reducing premature deaths of people with learning disabilities it is imperative we do it.

Professor Pauline Heslop
Programme Lead, Learning Disabilities Mortality Review (LeDeR) programme
Norah Fry Centre for Disability Studies
University of Bristol