People with a learning disability die on average 16 years younger than people without a learning disability. It is estimated that 1,200 people with a learning disability die avoidably in the NHS each year. Shocking as these statistics are, we have known about the premature mortality and the significant health inequalities faced by people with a learning disability for over two decades. But who has responded and what has been done?

The charity, Mencap, has been influential in increasing public awareness. Their reports, including Death by Indifference (2007), highlight poor clinical care contributing directly to the deaths of people with a learning disability. [2,3,10] Mencap alleged that the NHS was responsible for “institutional discrimination.”

Two independent inquiries subsequently shed more light on the issue. [1,4] Common themes blamed for the poor health outcomes of people with learning disability included the failure to make reasonable adjustments as required under the Equality Act, diagnostic overshadowing, inadequate training for staff, poor coordination of care, and a lack of understanding of the Mental Capacity Act.

In response there has been a gradual change in the organisation of healthcare for people with learning disability. GPs are expected to provide annual health checks, learning disability liaison nurses have been employed in acute hospitals, and staff trained in the Mental Capacity Act

Yet avoidable deaths continue to occur. Connor Sparrowhawk, a young man with a learning disability, died of an epileptic seizure while bathing unsupervised in an NHS hospital in 2013. A subsequent review found that there was a widespread failure to investigate and learn from the deaths of people with learning disabilities at the Southern Health NHS Foundation Trust where he had been receiving care.

Investigating and learning from avoidable deaths is vital for improving care and preventing further such events. The Learning Disabilities Mortality Review (LeDeR) programme was established in 2015. The programme supports local steering groups across England to review and learn from the deaths of local people with a learning disability.  Over 1000 local reviewers have been trained in the LeDeR methodology which involves three steps—the notification of the death, an initial review of the death, and where certain criteria are met, a multiagency review.

LeDeR released its second annual report in May 2018 summarising findings from death notifications between July 2016 and November 2017. 1311 deaths of people with a learning disability were reported and only 103 initial reviews and 13 multi-agency reviews were completed. LeDeR intended to complete initial reviews for all deaths, but achieved less than 10% of this target.

It seems there have been significant challenges to the programme, including a lack of dedicated resources. Each review relies on the time and expertise of healthcare professionals who perform the reviews in addition to existing responsibilities.  

Of the reviews that have been completed, the findings are depressingly familiar—poor care coordination and collaboration between agencies, a lack of understanding of the needs of people with learning disabilities and a lack of understanding of the Mental Capacity Act. In 13% of the completed reviews the person’s death was affected by delays in care or treatment, gaps in service provision, organisational dysfunction, or neglect or abuse.

In September 2018, the UK government response to LeDeR’s second annual report was published. It acknowledged the problem of incomplete reviews. NHS England has now allocated £1.4 million to support local CCGs to finalise the reviews in a timely manner. The government has instructed Trusts to comply with “National Guidance on Learning from Deaths,” the guidance for investigating deaths occurring in NHS care published by the National Quality Board in 2017 largely in response to the infamous events in mid-Staffordshire.

Many patients, carers, and clinicians have argued for the establishment of a properly resourced National Mortality Review Board, to ensure the ongoing, systematic investigation of all learning disability deaths.

But if the same themes are emerging following mortality reviews, would resources be better directed at addressing the actual problems which contribute to the health inequalities? In addition to learning from deaths, there must be an urgent focus on improving healthcare for people with learning disability while they are still alive.

Annual health checks for people with learning disability can significantly improve health outcomes, but uptake remains low. People with learning disability are less likely to be offered appropriate diagnostic investigations or treatments in a timely manner. It remains remarkably difficult to facilitate a simple blood test in a person with a learning disability who is frightened and refusing.

Properly resourced community learning disability teams can support people with learning disabilities to access mainstream health services. Recommendation four of the LeDeR report is that “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.”  Community learning disability nurses are ideally placed to do this work. However, the learning disability nursing workforce has fallen by one third since 2010 with some universities no longer offering training. Recruitment to learning disability nursing must be a priority if health inequalities are to be addressed.

Mencap continues to provide strong leadership and is promoting practical steps to improve health outcomes for people with learning disabilities. Their latest report Treat Me Well (2018) describes simple reasonable adjustments that all healthcare professionals can make, including tips on clearer communication and allowing more time for consultations. With over one million people living in England today with a learning disability, these are simple steps that have the potential to save lives.

The government and healthcare system must match this leadership shown by third sector organisations. Ensuring a properly resourced mortality review is an important step but urgent, coordinated action across healthcare is required to reach a parity of esteem for the health of people with learning disability.

Eileen McNamara, consultant psychiatrist, Barnet Learning Disabilities Service.

Kate Adlington, core psychiatry trainee, East London

Competing interests: KA – nil to declare. EM – works in a community learning disability services and as a LeDeR reviewer.

References:

1. Heslop P, Blair P, Fleming P, Hoghton M, Marriott A, Russ L. Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD). Bristol Norah Fry … [Internet]. 2013;1–128. Available from: https://rcpsych.ac.uk/pdf/Confidential Inquiry into premature deaths full report.pdf
2. Mencap. Death by Indifference. 2007.
3. Mencap. Death by Indifference: 74 deaths and counting. 2012.
4. Michael J, Richardson A. Healthcare for All: The Independent Inquiry into Access to Healthcare for People with Learning Disabilities. Vol. 13, Tizard Learning Disability Review. 2008. p. 28–34.
5. NHS England. NHS England » The NHS Five Year Forward View – executive summary [Internet]. NHS England. 2014. p. Accessed November 2017. Available from: https://www.england.nhs.uk/wp-content/uploads/2014/10/5yfv-web.pdf
6. Verita. Independent Review into issues that may have contributed to the preventable death of Connor Sparrowhawk. 2015.
7. Bristol U of. The Learning Disabilities Mortality Review (LeDeR) Annual Report 2017. 2017.
8. Assessment of an incentivised scheme to provide annual health checks in primary care for adults with intellectual disability: A longitudinal cohort study [Internet]. Vol. 1, The Lancet Psychiatry. 2014. p. 522–30. Available from: http://ovidsp.ovid.com/ovidweb.cgi?T=JS&PAGE=reference&D=emed13&NEWS=N&AN=2014617701
9. Royal College of Nursing R. Connect for Change. 2016.
10. Mencap. Treat Me Well. 2018.