Lives in the balance: we must tackle avoidable deaths of people with learning disabilities

Rachel Roberts 21 July 2020

The pandemic makes action more not less urgent. People’s lives continue to hang in the balance and this simply cannot wait.

Jonathan Senker, Chief Executive, VoiceAbility

According to the latest statistics, a person with a learning disability is two times more likely to die an avoidable death than a person without a learning disability. This stark statistic exposes the health inequalities that are deeply entrenched within our society and our health and social care systems. Put simply, people die when they should have lived.

The figures come from the Learning Disability Mortality Review Programme (LeDeR), commissioned by NHS England and carried out by the University of Bristol. Their 2019 annual report, as with previous reports, is a much-needed spotlight on a disturbing picture and demands action.

The findings lay bare the inequality that people with learning disabilities experience when trying to access timely and effective health interventions. It is unacceptable that so many people with learning disabilities die of treatable conditions.

However, our reality in 2020 has shifted dramatically since the 2019 figures were collected, due to the coronavirus pandemic. It is now even more urgent to address the inequality that people with a learning disability experience when accessing healthcare. Culture change and immediate practical steps must be taken to prevent the untimely deaths of people with learning disabilities. People’s lives are in the balance.

What the report shows

The LeDeR Annual Report for 2019 reveals that:

  • Life expectancy for people with learning disabilities is much lower than for the rest of the population. If you are a male with learning disabilities your life expectancy is 22 years lower than the average male without learning disabilities and for females the outcome is worse with a life expectancy 27 years less.
  • These health inequalities are further entrenched when they intersect with race and ethnicity. Black and people from an ethnic minority background are more likely than white people to die an avoidable death. Black people and people from an ethnic minority with mild to moderate learning disabilities die ten years earlier than white adults with the same level of disability, and those with severe, profound, or multiple learning disabilities die 26 years earlier than their white counterparts.
  • People with learning disabilities can experience poor levels of care. Almost half (44%) of people with learning disabilities who died did not receive good care. A third (34%) of deaths of people with learning disabilities were from treatable medical causes, where effective treatment is available and it is expected that a person would live, if treated properly. People with learning disabilities are four-times more likely to die from a treatable medical cause than the general population.
  • Pneumonia remains a major cause of avoidable deaths. 24% of the deaths reviewed listed bacterial pneumonia as a cause of death and 16% of the deaths reviewed listed aspiration pneumonia. This means that 1 in 6 people who died an avoidable death died as a result of food and drink going down the wrong way.

Reaction from our Chief Executive

The latest figures from the LeDeR report are deeply disturbing but unfortunately they do not tell us a great deal that we did not know already. Far too many people with learning disabilities die too young.

This must not be allowed to continue. The LeDeR report’s recommendations supplement the growing body of evidence about how to address health inequalities faced by people with learning disabilities. This must be prioritised and acted on.

The pandemic makes action more not less urgent. People’s lives continue to hang in the balance and this simply cannot wait,” said Jonathan Senker, Chief Executive, VoiceAbility

What must happen now?

Until we and the systems we develop value the lives of people with learning disabilities equally to non-learning-disabled people, high numbers of avoidable deaths will continue. 

The NHS and government have shown through the Covid-19 pandemic that when as a country we want to and need to, we can set up systems quickly. This same drive and determination must be directed towards tackling health inequalities. 

Health checks and standard care

The pandemic brought to a sudden halt many of the vital measures introduced to tackle health inequalities for people with learning disabilities. Where routine health checks and reasonable adjustments have stopped, these must restart immediately. They must be accompanied by proactive outreach by primary care and hospital teams to reach people with learning disabilities. We must urgently prioritise the most at-risk population groups for routine health checks, flu vaccinations, and medication reviews. 

Efforts should be redoubled to ensure that services are accessible and appropriate to the needs of people with learning disabilities and that reasonable adjustments are put in place for everyone who needs them. 

Testing

As the pandemic continues, there must be Covid-19 testing readily available to staff and residents in care home and supported living settings. Without this, there is a very real risk of outbreaks which are difficult to manage and which pose serious risk to people with learning difficulties. The guidance around supported living settings is particularly patchy and clear guidance and resources for testing must be made available. Whatever testing regimes are in place at any one time, these must be delivered with informed consent and full consideration of the wellbeing of individuals.

Preventative guidance on aspiration pneumonia

The numbers of deaths from pneumonia alone show that there is no time to waste. We welcome LeDeR’s recommendation that there be timely, NICE evidence-based guidance” to prevent deaths from aspiration pneumonia. The key word is timely. NICE has demonstrated by its work in relation to Covid-19, that it can develop rapid guidelines. This simply cannot wait the usual two, three or more years from guideline commissioning to completion.

Education

The NHS and government must fully recognise the intersection of race, ethnicity, and disability in people’s experience of healthcare. Staff and healthcare professionals must receive training to increase the provision of effective support for people with learning disabilities and for Black people and people from minority ethnic backgrounds with learning difficulties. 

In late March, even as the pandemic was taking hold, NHS England produced well considered guidance for clinical staff on supporting people with learning disabilities and autistic people in relation to Covid-19, this should be widened, built on, and linked with the mandatory training requirement. 

Upholding rights and access to advocacy

Advocates work with people to support them to be heard, have their rights respected, and ensure they can access the health and care services they need in order to stay well. We know that advocacy can make a significant difference to the outcomes for a person with a learning disability and can help them and their family navigate complex systems. People with the right to advocacy must be supported to access an advocate. 

Culture change

Tackling health inequality cannot be just about new programmes and targets, important as they are. It must be about a wholescale culture change in terms of how we work with people with learning disabilities to support their health and wellbeing. This means actively challenging inequality and properly involving people and their families (when appropriate) in their health and wellbeing, and holding the inherent value of each individual at the centre of decisions about their care and treatment.