People with a learning disability and coronavirus

We know that the coronavirus pandemic has had a significant impact on people with a learning disability. To help us understand how people have been affected we asked the University of Bristol to look at the deaths of 200 people who died between 2 March and 9 June 2020. They have published a report about what they found; an easy read version has also been published.

We asked for the report to be written so that we could look at:

  • what lessons could be learnt from the deaths of people with a learning disability at the start of the pandemic
  • how people were cared for when they had coronavirus
  • what needs to change so that people with a learning disability and coronavirus get better care and treatment in the future.

A report by Public Health England (PHE) has used the information from the University of Bristol as well as other organisations to estimate how many people with a learning disability have died altogether. They have done this because we know that not all deaths of people with a learning disability are notified to the Learning Disabilities Mortality Review (LeDeR) programme.

Action from learning

These reports have highlighted some good practice in the care of people with a learning disability during coronavirus, but they have also raised concerns about the care that some people received.

Many of the concerns raised are consistent with themes found in the annual LeDeR reports. This short report, which is also available in easy read, outlines the actions we have already taken in response to some of the issues raised as well as the actions we intend to take next.

We will be working with partners across the NHS to carry out these actions to make sure that people with a learning disability who get coronavirus receive better treatment and care. Specific actions coming out of the report are as follows:

 Actions for GP practices  

 We are asking that all GP practices:

  • Increase the uptake of annual health checks. GPs can use this information to assess whether a person with a learning disability is high, moderate or low risk so that annual health checks can be prioritised for people most in need. (Please note different tools are also available).
  • Review the Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decisions for people with a learning disability registered with their practice to make sure they are appropriate for each person. Supporting guidance can be found in the quality and outcomes framework published in September 2020.
  • Consider all of the health issues each person on their learning disability register has and determine whether any of their registered population with a learning disability is at a higher risk of serious illness from coronavirus so that they can be advised to take extra precautions to stay safe.
  • Be aware of diagnostic overshadowing and that the signs that someone with a learning disability displays when they become unwell might be different to someone without a learning disability.
  • Make sure that the right reasonable adjustments are made for people with a learning disability.

Actions for health and care organisations (integrated care systems)

An integrated care system (ICS) is a group of health and care organisations who come together to improve the health of people in their area by providing services which work well together.

We are asking that all ICSs:

  • Make sure that the right reasonable adjustments are made for people with a learning disability across all health and care services.
  • Ensure that all clinical staff understand how to implement the Mental Capacity Act and check that it is being implemented appropriately in every service.
  • Ensure that your system employs staff such as learning disability liaison nurses, who are able to support mainstream services to make the reasonable adjustments needed for people with a learning disability and people who are autistic.
  • Make sure that people living in care homes are receiving the same level of support as they were when living in their own home by implementing the enhanced health in care homes guidance published in March 2020, and ensure that every care home has a lead GP who is responsible for delivering the services described in that guidance.
  • Implement COVID-19 virtual wards to monitor patients at risk of deteriorating with COVID-19 for all care settings where people with a learning disability are living, including the provision of pulse oximeters to care staff where these are needed.
  • Train both health and care staff in the use of tools such as RESTORE2™ which help them to identify the soft signs of deterioration in health.
  • Make it clear to all doctors who complete death certificates that a learning disability should never be included in a medical certificate as cause of death.
  • Make sure that local providers use the demand and capacity guidance published in March 2020 to plan how best to manage their capacity across inpatient and community services for people with a learning disability.
  • Support people with a learning disability to make healthy life choices including looking at managing weight and taking regular exercise where possible, to reduce the impact of COVID-19 should they catch it.
  • Implement a system wide health passport for people with a learning disability that is understood and used by all services, including ambulance services, so that if a person needs to go into hospital or receive urgent treatment their main health needs and concerns can be readily understood even if their clinical notes are not easily available.

Useful resources

To support you with these actions we have developed a list of useful guidance for health and care staff, people with a learning disability and families and carers.

Do Not Attempt Cardiopulmonary Resuscitation (DNACPR)

Reasonable adjustments

There are some examples of good practice about reasonable adjustments in the 2019 LeDeR Action from Learning Report.

In London, Enfield’s integrated Learning Disability’s Service has improved hospital discharge by working with the London A2A Network to produce a ‘My hospital visit – information to take home with me’ accessible discharge booklet.

Annual health checks

NHS North Lincolnshire CCG and NHS Rotherham, Doncaster and South Humber Community Learning Disability team have done lots of work to make sure that people are on the GP learning disability register so that they get their annual health checks. The number of people on the GP learning disability register has gone up from 577 to 891 in the last two years.

Spotting the signs of deterioration

Building on literature, best practice and insight from five clinical focus groups, Cheshire and Wirral Partnership NHS Foundation Trust’s Community Learning Disability team (CLDT) developed an easy to use assessment tool to identify when a person’s physical health is deteriorating and the factors that might put them at greater risk of admission to hospital.

Numbers of people with a learning disability who have died from coronavirus

Each week we put a table online to show how many people whose deaths have been notified to the LeDeR programme have died from coronavirus.  We have done this every week since May.

It is important to note that notifying the death of a person with a learning disability to LeDeR is voluntary and so the data might change as new notifications are made.

The data shown in the table supplements the weekly update that shows the number of people with a learning disability and autistic people who have tested positive for coronavirus and died in a hospital in England.