As I write, the days are getting slightly longer, although we are in the grip of storms and torrential rain. I always seem to start my editorials with a comment on the weather. Let me turn to something we have more control over: advocating for a group of vulnerable people in communities who experience inequalities in health; people with learning disabilities. This shameful inequality, right on our doorstep, has been ignored for far too long and at last the government is acknowledging the need to act.
There are 1.5 million people with a learning disability in the UK and the vast majority are adults living in community settings (Parkin, 2023). Learning disabilities tend to be classed as mild, moderate or severe to describe the impact on individuals' lives. However, all people with learning disabilities experience significantly reduced ability to understand new and complex information, and learn new skills, leading to a reduced ability to cope independently. Note that learning disabilities are not synonymous with autism. This is an important distinction when assessing and responding to an individual's needs. Although some people with a learning disability are also autistic, many people with autism have no difficulty with learning at all; their needs when encountering healthcare will be quite different.
The extent to which someone with a learning disability is impacted by their disability will, to some degree, depend on the severity. Yet, irrespective of severity, it can be anxiety provoking for anyone with a learning disability to navigate the healthcare system, which can lead to misunderstandings and labels of being difficult or awkward and, at worst, diagnostic overshadowing (Hallyburton, 2022). Diagnostic overshadowing is where physical symptoms are attributed to the learning disability and ignored with serious, sometimes fatal, consequences.
When we consider the prevalence of learning disabilities in the population (likely an underestimation) there is a high chance that district nurses have someone with a learning disability on their caseload. While probably aware of people with moderate to severe learning disabilities, nurses might miss people with milder disability, which is harder to detect. Mild learning disability can have a significant impact on health literacy and accessing healthcare, partly because healthcare professionals do not recognise the need to signpost and guide individuals through the complex healthcare system.
The stark fact is that people with learning disabilities die, on average, 25 years earlier than the rest of population, which is a shocking statistic (Cooper et al, 2020). While some people have congenital abnormalities that contribute to early mortality, for the vast majority this isn't the case. Let's take one simple and perhaps surprising cause of death: constipation. Left untreated, it can lead to bowel distension and individuals dying from ischaemia and perforation. While 10% of the general population suffer from constipation, between 20-50% of people with a learning disability do (LeDeR, 2020). In 2016, Richard Hadley, a man with learning disabilities, died in hospital at the age of 33 from chronic, untreated constipation as a result of miscommunication in the multidisciplinary team in primary and secondary care. He was, and remains, one individual of far too many: diagnostic overshadowing writ large.
The government has stepped up and all Care Quality Commission inspected organisations in the UK are now obligated to train their staff in learning disabilities and autism, using the Oliver McGowan online and face-to-face learning resource. Oliver, like Richard, died in hospital as a result of miscommunication. His death was entirely preventable. This is a call to action. An important first step is district nurses recognising that someone has a learning disability. It is more common than expected. Secondly, district nurses can help the person with learning difficulties to communicate their needs. One way of doing this is by helping them and their carers to complete a hospital passport, which expresses their needs and preferences, including how to communicate with them clearly. Individuals should be encouraged to take their hospital passport to all inpatient settings, whether as an online or hard copy. As district nurses, we cannot always influence what happens in secondary care, but we can prepare people as best we can to navigate the system when it is needed.