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Deaths from COVID-19 reviewed as part of the LeDeR programme

Introduction

A short summary of the findings from the first 50 completed LeDeR reviews relating to COVID-19 is now available.

An easy-read version will be available shortly and we will share this on the website when it’s available.

This short paper describes key information relating to 50 people with learning disabilities whose
death has been attributed to COVID-19. Each of the people have had their death reviewed as part of
the Learning Disabilities Mortality Review (LeDeR) programme.

The aim of the paper is to highlight those aspects of the condition itself, or the care provided to
those who have died, that can inform a better understanding of COVID-19 as relevant to people with
learning disabilities.

The objectives are to:

• Describe the symptoms and presentation of COVID-19 in a sample of 50 people with learning
disabilities.
• Describe the circumstances of their death.
• Extract any learning for future service provision in relation to COVID-19 in people with
learning disabilities.

Key findings

Numbers are small so care needs to be taken when interpreting these findings or communicating our
analyses, but from the 50 completed reviews of deaths related to COVID-19 there are 6 broad
conclusions:

  1. Mobility impairments and/or mental health needs may be proxy indicators of people at risk
    of catching the virus, or may underpin prejudicial attitudes towards care, treatment and
    judgements about ceilings of care.
  2. It would seem appropriate to consider people with learning disabilities and epilepsy as being
    at increased risk of death from the virus and pay attention to protecting them.
  3. The key symptoms of COVID-19 in the general population (fever, new continuous cough, loss
    of sense of smell or taste) may not be as apparent in people with learning disabilities.
  4. The use of DNACPR decisions and the initiation of palliative/end of life care should be
    monitored to ensure that this population is not being disadvantaged. DNACPR stands for Do Not Attempt Cardio-pulmonary Resuscitation. It helps to ensure a patient’s death is dignified and peaceful.
  5. Close attention needs to be paid to safe and appropriate hospital discharge planning. One in
    five of the completed reviews indicated that the person had previously been discharged
    from hospital, only to be readmitted again soon afterwards.
  6. Additional resourcing for specialist learning disabilities staffing and expertise in primary and
    secondary care appears to be indicated from the findings of this small study.

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