As a mother of a 10-year-old boy with a profound and multiple learning disability from an unknown genetic cause, the arrival of the English Learning Disabilities Mortality Review (LeDeR) in my inbox is always a heart sink moment.
I try to look for the positive, some good news that suggests that the tide is turning and there are indications that the healthcare of people with a learning disability is improving.
Perhaps it was wistful thinking that the annual report during a pandemic year - where the proportion of deaths of people with learning disabilities from Covid-19 was greater than the proportion of deaths in the general population - would provide that glimmer of hope.
Yet, it was still a shock to read that people with a learning disability are dying 25 years younger than the general population and are three times more likely to die avoidably.
Although the report did state that there is an encouraging picture of an overall reduction in the proportion of preventable, treatable and overall avoidable medical causes of death from 2018 to 2020, it highlighted that there are also indications that such improvements are not felt across all aspects of service provision.
In fact, reviewers found that in 42% of deaths, a person's care had not met good practice standards.
So, after decades of reports, inquiries and recommendations, when is the talking going to stop and we actually see some effective changes?
What are preventable deaths?
Preventable mortality is defined as causes of death that can be mainly avoided through effective public health and primary prevention interventions (i.e. before the onset of diseases/injuries, to reduce incidence). Treatable (or amenable) mortality is defined as causes of death that can be mainly avoided through timely and effective health care interventions, including secondary prevention and treatment (i.e. after the onset of diseases, to reduce case-fatality).
Avoidable mortality is all causes of deaths and all those defined as preventable or treatable.
Compared to the general population, people with learning disabilities are over three times as likely to die from an avoidable medical cause of death (671 per 100,000 compared to 221 for the general population in 2019).
Treatable causes of deaths in adults aged 20–74 years were 41% in 2018, 40% in 2019, and 39% in 2020. In children, the proportion was 29% across all three years.
Overall avoidable medical causes of deaths in adults were 54% in 2018, 52% in 2019, and 50% in 2020. In children, the proportion was 36% across the three years.
Adults and children from Black/African/Caribbean/Black British ethnic groups, and mixed/multiple ethnicities had a higher proportion of treatable medical causes of death (44% and 43% respectively) than people from other ethnic groups.
The most frequently recorded types of treatable medical causes of deaths among adults were bacterial pneumonia, ischaemic heart disease and epilepsy. In children, epilepsy was the most frequently recorded treatable medical cause of death, followed by bacterial pneumonia and acute lower respiratory infections.
Factors contributing to higher numbers of preventable deaths
The concept of preventable deaths in people with a learning disability is not new. The 2010-13 Confidential Inquiry into Premature Deaths of People with Learning Disabilities found that nearly a quarter of people with learning disabilities were younger than 50 years when they died, with women dying on average at a younger age than men.
The same contributory factors outlined in reports dating as far back as 2007 are flagged up in the latest LeDer data and include problematic or unsafe hospital discharges, diagnostic over-shadowing, incomplete learning disability registers held by GPs, and lack of application of the Mental Capacity Act.
It also highlighted the patchy provision of specialist learning disability liaison nurses in hospitals, families not feeling listened to or their concerns acted upon, and lack of consideration of the need for ‘reasonable adjustments’ to existing policies and processes for people with learning disabilities.
Other variables impacting on preventable deaths identified by the report were:
- being of Asian/Asian British ethnicity, mixed/multiple ethnicities, or of Black/African/Caribbean/Black British ethnicity
- having severe or profound and multiple learning disabilities
- being subject to mental health or criminal justice restrictions in the five years prior to death
- not having an annual health check in the year prior to death.
The proportion of adults with a DNACPR decision at the time of their death has also risen slightly between 2018 and 2020. Of those with a DNACPR decision, the proportion that were known by the reviewer to be correctly completed and followed decreased from 2018 to 2020.
What can be done to prevent more avoidable deaths?
Widespread use of the 2019 NHS England and NHS Improvement improvement tool Reducing deaths of people with a learning disability in NHS acute (hospital) trusts in England could help. The aim of the tool is to help NHS acute (hospital) trusts evaluate and understand the capability of their systems and structures to reduce premature mortality of people with a learning disability in their care, and to make improvements where needed.
Reasonable adjustments in both the primary and secondary setting have also been identified as key in addressing health inequality. Failing to provide reasonable adjustments can cause delays in diagnosis and treatment.
Diagnostic overshadowing also plays a vast role in delaying treatment. Although the majority of my son's healthcare has been excellent, we have experienced this many times. The most dangerous was when head banging was dismissed as behavioural before hypoglycaemia (low blood sugar) from cortisol deficiency was eventually diagnosed.
A recent British Medical Journal (BMJ) article said that examination, investigations, and treatment can also be hindered if health professionals have a poor understanding of mental capacity; for example, misunderstanding an anxious person with a learning disability’s reluctance to cooperate as a valid refusal to consent.
The article also called for action at the individual level. It said that healthcare professionals each know what they ought to do to improve healthcare for people with a learning disability, but they're not always doing it.
It added: "To understand why not, we need to reflect on our own unconscious bias: is our background, personal experience, or learnt societal stereotypes impacting on our actions and decisions about people with a learning disability without us realising?"
Recommendations from LeDer to address this include:
- All people with learning disabilities with two or more long-term conditions (related to either physical or mental health) should have a local, named health care coordinator
- Family and other carers should be involved as a matter of course as partners in the provision of treatment and care, unless good reason is given, and Trust Boards should ensure that reasonable adjustments are made to enable them to do this effectively. This will include the provision of information but may also involve practical support and service co-ordination.
- Consider developing, piloting and introducing specialist physicians for people with learning disabilities who would work within the specialist multidisciplinary teams and making ‘learning disabilities’ a physician speciality of the Royal College of Physicians.
The pandemic has exposed and amplified underlying health inequalities in society and tackling the causes is even more urgent now. As the UK recovers from the health and economic impact of the pandemic, experts believe that if these things are not finally addressed, the same people will face many more years of inequality.
There is both a moral and economic case for tackling health inequalities in the care of people with a learning disability. As well as the impact on vulnerable patients, health inequality also places a considerable burden on our health service. One study put the cost of socioeconomic inequality for the NHS at £4.8 billion a year.
As Professor Sir Michael Marmot, director of the UCL Institute of Health Equity, recently said: “If health has stopped improving it is a sign that society has stopped improving.”
Me and my son Gabriel, who deserves better!