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.
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)
- Letter clarifying use of DNACPR for people with a learning disability and/or autistic people.
- Joint statement on personalised approaches to care and treatment.
- A guide for people with a learning disability and families and carers about understanding their rights and challenging decisions.
- Grab and Go hospital passport for people with a learning disability.
- Reasonable adjustments – a legal duty.
- Sharing information about your support needs – an easy read guide to reasonable adjustments.
- Hospital passports can be found in many systems – here is the Mencap hospital passport and also one from the National Autistic Society.
There are some examples of good practice about reasonable adjustments in the 2019 LeDeR Action from Learning Report.
Annual health checks
- Information for people with a learning disability and families and carers and health and social care staff. Includes template letters, pathways, videos and easy read resources for different audiences.
- Guide to supporting someone to have their annual health check in person or virtually.
- Guide for GP practices doing annual health checks in person or virtually.
Spotting the signs of deterioration
- RESTORE2TM is a physical deterioration and escalation tool for care and nursing homes to support homes and health professionals to identify when a person is becoming more unwell.
- Clinical guide for front line staff supporting people with a learning disability, including an easy read version.
Numbers of people with a learning disability who have died from coronavirus
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.