The latest report from the LeDeR project hit the headlines last week after it found that the gap in life expectancy between people with a learning disability and the general population appears to be worsening.

It also found that people with learning disabilities are dying on average 22 years younger than in the general population. Of these deaths, 49% died of an ‘avoidable’ death compared to 22% in the general population.

The shocking statistics have left self advocates from Learning Disability England feeling angry and scared with many saying their lives matter too. They are now urging everyone who works in or leads services of any kind to think what they can do to ‘work together for change'.

What is the LeDer report?

The LeDeR (Learning from Lives and Deaths People with a Learning Disability and autistic people) programme was established in 2017 to improve healthcare for people with a learning disability and autistic people.

A mortality review process was a recommendation from the Confidential Inquiry into the premature deaths of people with a learning disability in 2013, which found people with a learning disability had poorer health outcomes and shorter life expectancy.

The aim of the LeDeR project is to:

  • Improve care for people with a learning disability and autistic people.
  • Reduce health inequalities for people with a learning disability and autistic people.
  • Prevent people with a learning disability and autistic people from early deaths.

Funded by NHS England and NHS Improvement, each year it summarises the lives and deaths of people with a learning disability and autistic people from the previous year.

The 2021 reports were made by researchers at King’s College London collaborating with academic partners at the University of Central Lancashire and Kingston-St George’s University, London. Prior to June 2021, the University of Bristol published LeDeR annual reports.

Main findings from the 2021 report

Researchers found that over 50% of people with a learning disability died in areas rated as some of the most deprived in England. Also, six out of 10 people living with a learning disability died before they were 65.

The five most frequently reported long-term health conditions for people who died in 2021 and received an initial review were: epilepsy (33%, n=364), cardiovascular conditions (33%, n=357), mental health conditions (32%, n=355), sensory impairment (25%, n=269), and dysphagia (23%, n=250).

Previous reports have shown that people from ethnic minority backgrounds have the poorest outcomes of all groups. One of LeDeR's policies is that focused reviews will be completed or every person from a non-white British background. There is still work to be done as 91% of people who were notified to LeDeR in 2021 were denoted as white.

This may be due to a difference in population structure of people with a learning disability (with fewer older people from ethnic minority groups), although an underreporting of deaths of people from ethnic minority backgrounds may also be possible.

Covid-19 excess deaths

The most common cause of death based on death certificates during 2021 was Covid-19, with spikes in deaths occurring during April 2020 and January 2021.

It also found that the estimated excess deaths during 2021 compared to pre-pandemic years were double that of the general population and being vaccinated reduced the likelihood of dying of Covid-19.

The researchers recommend that people with a learning disability should therefore be protected against future pandemics and further waves of Covid-19 (such as by enabling rapid implementation of methods to reduce transmission). They should also continue to be prioritised for vaccinations and booster vaccinations, including young adults.

DNACPR and people with a learning disability

Of the 2,662 people that died in 2021 and had initial review data, 64% had a DNACPR decision in place at the time of death. This compares to 63%, 63% and 64% in 2018, 2019 and 2020.

A concerning finding was that reviewers judged DNACPR documentation and processes to have been correctly followed in only 60% of the deaths in 2021, where a DNACPR was present. Additional work will now be necessary to understand where these problems arise, and how this can be improved.

For self advocates this was a worrying statistic despite all the specific guidance, awareness raising, campaigning and training that has gone into ensuring the proper recording and appropriate use of DNACPRs since the start of the first Covid lockdown.

Ivan Olbrechts, family and friends Rep Body member at Learning Disability England, said: "Even a national scandal and Care Quality Commission investigation hasn’t prevented a worsening trend."

How can things change?

The LeDeR reviewers say that the main message to emerge is the need for continued work to ensure that healthcare services make reasonable adjustments for people with a learning disability.

A number of initiatives have been introduced over the past few years to improve healthcare for people with a learning disability, including the annual health check, health action plans, hospital passports, and learning disability awareness training. Yet, although there were many examples in which these initiatives had been associated with positive practice, implementation was not universal.

These practice initiatives are supported by legislation such as the Equalities Act and the Mental Capacity Act, but again there were reports of these principles not being applied consistently.

The role of learning disability liaison nurses in acute hospital settings was also flagged as a good bridge between the principles and the provision of good care.

The reviewers added that it was notable that the actions and approach of individual staff from across disciplines in the health and social care sector were singled out for praise, suggesting a real willingness and commitment to providing the best care possible. This was set against systems which were, at times, perceived as being inflexible.

Key questions to ask?

The LeDeR reviewers say a key question is how can acute trusts most effectively implement models of providing learning disability liaison care, seeing as they brought benefits for people with learning disability who are admitted to hospital. 

Also, how can professionals and services make the annual health check most accessible and maximise the proportion of eligible individuals who receive one? 

As prompt identification and response to worsening physical health is important, they also asked what additional strategies are needed for carers to be able to recognise and respond appropriately to deteriorating health of people with a learning disability?

In addition, avoidable deaths appear to increase towards middle age, so earlier interventions may be necessary. Therefore, how can prevention and care pathways of specific long-term conditions, such as cancer and respiratory conditions (and possibly hypertension) which are associated with higher risk of avoidable deaths, be improved?

Finally, how can local systems better understand the regional differences in avoidable mortality?

Learning Disability England self advocates have their own answers to some of these questions. They say there needs to be proper, open on-going action, not short-term interests or words.

This includes:

  • Better ways of holding all NHS organisations to account and make the changes it has known for years are needed.
  • The inclusion of the critical role of people with lived experience at every level.
  • Social care workers and organisations coming together with self advocates and families on an equal basis as drivers for change in people’s lives as well as NHS services.
  • To involve self advocates and families in every part of creating change.

As Ivan Olbrechts said: "We can’t just keep talking about our ‘shock’ and ‘outrage’. There needs to be real accountability in the system. There needs to be change.”