Dying to get it right: Supporting people with learning disabilities to address health inequalities in the face of coronavirus

Jonathan Senker 13 November 2020

There is a need for both immediate action in relation to the pandemic and a sustained focus to address pre-existing issues which have been exacerbated by coronavirus.

People with learning disabilities are much more likely to die from coronavirus than people without learning disabilities. And Black and Asian people with learning disabilities are even more likely to die from coronavirus. This isn’t because the virus targets people with learning disabilities. It is because we are failing as a society to take enough action to support the health and wellbeing of people who are at the sharp end of structural and health inequalities.

Public Health England’s report published yesterday found that people with learning disabilities were six times more likely to die from coronavirus than the general population (standardising for age and sex). This is beyond awful, but no surprise.

Even before the pandemic, on average people with learning disabilities died much younger than people without learning disabilities. Research published in 2019 by the Learning Disabilities Mortality Review (LeDeR) Programme found that average life expectancy was 27 years shorter for females and 23 years shorter for males. We know beyond any doubt that far too often people with learning disabilities die from conditions that other people rarely die from, and which are easily preventable or treatable, for example severe constipation. 

The question is what must be done and be done now. 

A report into the deaths of 206 people with learning disabilities in the early months of the pandemic from the LeDeR Programme, also published yesterday, refers to 76 recommendations specific to coronavirus. Their reviewers made many more general recommendations also. In response to the LeDeR report, NHS England and NHS Improvement have published a summary of the many actions that they have taken or intend to take. They have also issued some helpful actions for GPs and health and care organisations.

As there is no single magic bullet, we must take an approach that combines a range of actions. But there are several things which must always happen - not just in policy but in practice - and these must be carried out with absolute determination at every level. There is a need for both immediate action in relation to the pandemic and a sustained focus to address pre-existing issues which have been exacerbated by coronavirus. I believe that the following actions should be a priority. 

1. People with learning disabilities should be given a higher priority for coronavirus vaccinations when they become available.

2. There should be regular asymptomatic testing for all people with learning disabilities and support staff – not just those in residential care settings.

This should also be extended to family carers. There is limited data in the reports about mortality rates in non-residential community-based support, but enough information to justify this, particularly as the government expands testing capabilities to students and city-wide pilots.

3. There must be more intensive support for GPs to identify all their patients who have a learning disability so they can provide additional support.

There are some great materials available for GPs, including these from Dimensions.

People with Down syndrome were promptly added to the list of people who are clinically extremely vulnerable’, after evidence showed their increased level of risk. Following this, some GPs got in touch with people quickly to offer support. This is a welcome example of the importance of using evidence, making decisions, identifying people, and taking action.

4. We must keep a strong focus on annual health checks for people with learning disabilities.

These are already a matter of policy supported by strong encouragement by NHS England and reinforced by specific guidance in relation to coronavirus. But these health checks, which have never been as extensive as needed, will no doubt be at risk as GP appointments, especially face-to-face, remain under pressure.

5. Every single person with a learning disability should be offered a flu vaccination, unless clinically inappropriate.

There is lots of effort being made in this area – this must continue.

6. We need to make sure there is a high level of awareness amongst all support and care staff about the common health issues that disproportionately affect people with learning disabilities.

These issues include constipation and aspiration. Service providers have developed some excellent resources, including these from Turning Point.

7. As waiting lists for NHS treatments peak at their highest level for over a decade, people with learning disabilities, who may find it harder to express that their condition is deteriorating, must receive additional health checks and reviews.

8. We must use professional and regulatory sanctions when healthcare providers continue to make unlawful blanket healthcare decisions that limit or restrict access to appropriate treatment for people with learning disabilities, in the context of the coronavirus pandemic and beyond.

Underpinning all these actions must be an absolute commitment, on the part of public bodies and those who work for them, to address the health inequalities affecting people with learning disabilities. This needs to combine a sharp focus on barriers to prevention, diagnosis, and quality treatment with addressing the wider causes of poor health, including inadequate support, poor housing, and poverty.