How the care for people from different groups is being managed

Page last updated: 12 May 2022

COVID-19 Insight: Issue 2

Deaths of people with a learning disability

On 2 June, we published new data on the number of deaths of people who were receiving care from services that provide support for people with a learning disability and/or autism. This showed that between 10 April and 15 May this year, there were 386 deaths of people with a learning disability (some of whom may also be autistic). This compares with 165 people who died in the corresponding period last year. This was a 134% increase in the number of death notifications this year. ​

Of the 386 people who have died this year, 206 were as a result of suspected and/or confirmed coronavirus (COVID-19) as notified by the provider and 180 were not related to coronavirus.

We know that people with a learning disability are at an increased risk of respiratory illnesses. In March 2020, NHS England highlighted how people with a learning disability have higher rates of morbidity and mortality than the general population, and die prematurely. In 2018/19, at least 41% of people with a learning disability who died, died as a result of a respiratory condition. They have a higher prevalence of asthma and diabetes, and of being obese or underweight; all these factors make them more vulnerable to coronavirus.​

Our figures show that the impact on this group of people is being felt at a younger age range than in the wider population. Since the initial release of this data, DHSC has announced that testing will be rolled out across residential adult social care settings, including to adults of working age with a learning disability.

Notifications from providers of services for people with learning disabilities and/or autism spectrum disorder that state the person who died had a learning disability by age and coronavirus status: 2019 vs 2020. Data for people aged under 25 is excluded as these numbered less than five.
Stacked bar chart showing the numbers of deaths of people with learning disabilities and/or autism notified to CQC in 2019 and 2020. The 2020 figures are split into those due to suspected or confirmed coronavirus and those not due to the disease. The chart shows a marked increase in the numbers of deaths overall in 2020. The full data for the graph is available on the 'Our data' page.0501001502020 coronavirus(suspected and confirmed)2020 not coronavirus201985+75-8465-7455-6445-5435-4425-34

The 386 deaths of people with a learning disability occurred in 313 individual care settings. It is possible that any of the services also reported more coronavirus related deaths but they were not of people with a learning disability.​

Of the 386 people who died, 184 were receiving care from community-based adult social care services and 195 were receiving care in residential social care settings.

Type of adult social care service notifying us of the death* Number of notifications where the person did not have coronavirus Number of notifications where the person had confirmed or suspected coronavirus Total
Community-based adult social care services 86 98 184
Residential social care 90 105 195

*We only show this breakdown of service types for adult social care. Other services who notified us of deaths of people with a learning disability number less than 10; to avoid identifying individuals we have not included them here.

We are working to improve the data set that underpins this information and will include more analyses in future editions.

Deaths of people detained under the Mental Health Act​

All providers registered with CQC must notify us about deaths of people who are detained, or liable to be detained*, under the MHA. From 1 March to 5 June 2020, we have been notified of 75 deaths that mental health providers indicated were suspected or confirmed to be related to coronavirus. A further three coronavirus related deaths of detained patients were reported by other (non-mental health) providers.

Of the 152 notifications from mental health providers in the 2020 period (covering all causes of death), 113 were from NHS organisations, of which 49 deaths were indicated as being coronavirus-related, and 39 were from independent providers, of which 26 deaths were coronavirus-related.​

The table below compares the number of deaths notified to CQC in the above period with equivalent periods in preceding years. When interpreting trends, please note that such low numbers are subject to fluctuation. The split of deaths by age and gender are shown on the 'Our data' page.

Statutory notifications received by CQC under regulation 17 between 1 March and 5 June each year
Type of provider 2016 2017 2018 2019 2020 (without duplicates) 2020 reported deaths due or suspected to be due to coronavirus
Mental health providers 86 69 81 68 152 75
Non mental health providers 5 3 6 9 8 3

*Includes detained patients on leave of absence, or absent without leave, from hospital, and conditionally discharged patients. ‘Detained patients’ also includes patients subject to holding powers such as s. 4, 5, 135 or 136, and patients recalled to hospital from CTO.

Our focus remains on responding to concerns about people’s care​

During the coronavirus pandemic, we have inspected, and we will inspect, mental health, learning disability and autism services where we have, or are alerted to, serious concerns about people’s care and where there are breaches of human rights. We have committed to having a full programme of responsive inspections underway again for these types of settings, but this will not delay us from inspecting services where we are concerned about risks right now.

In addition, our Mental Health Act Reviewers are still monitoring the use of the Mental Health Act and will complete site visits if they identify concerns. Their monitoring includes collecting information from a range of sources by phone, email or video calls with staff, people who use services and families. If there are risks of harm, ill-treatment or human rights breaches, we will carry out additional activity, which may include a site visit.

Deaths of people from BME groups in adult social care settings​

We know that people from black and minority ethnic (BME) groups appear to be at greater risk of dying of coronavirus, and this is an area where more research is urgently needed. While the data we hold has a number of limitations, the lack of data on ethnicity across adult social care as a whole makes it more important that any information in this area is shared - both to aid understanding and highlight the need for more robust data.

Providers are required by law to notify us of the death of a person accessing their service. We ask for a range of demographic information about the person who died, using a structured reporting form (‘SN16’). The form asks for the ethnicity of the person who died, but it is not mandatory for the service provider to provide it. (This information is also not available from a death certificate.) The ethnicity reported on the SN16 form reflects the ethnicity that the provider selects – we cannot be sure that this would be the same as that which the person who died would self-report.​

The data that follows includes death notifications in adult social care settings from 10 April to 15 May 2020 (and the equivalent period in 2019). The percentage of forms where ethnicity was unknown, not stated, missing or could not be analysed (due to factors including illegibility of hand written forms) was 13.8% in 2020 and 13.4% in 2019. It is possible that the death notifications where ethnicity is not recorded include a higher proportion of people from BME groups, but we are not able to determine this.​

Preliminary analysis of the forms that could be analysed indicates that the vast majority of reported deaths in adult social care settings are of people in the White group. However, the percentage of deaths notified to us of suspected or confirmed coronavirus compared with non-coronavirus deaths is higher in people from BME groups (44.2%) than White people (41.4%). Further indications are that the impact for Black groups is likely to be higher than for BME groups overall (see the 'Our data' page of this report), and we are currently verifying these numbers.​

We cannot contextualise these figures due to the lack of data on ethnicity across the adult social care sector population as a whole; this data is not consistently collected on admission by care homes or by other adult social care providers. We are carrying out a targeted piece of work to review death notifications and how we work with providers to ensure the data provided to us is both accurate and accessible. We will be looking at how we collect data on ethnicity as part of this.

There is a much wider question of how ethnicity is recorded across adult social care, as there is limited research or information on this.


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COVID-19 Insight: Issue 2

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Previous issue

You can read the first issue of the report that we published in May. This issue looked at adult social care and the impact of the pandemic on staff wellbeing and the financial viability of services.

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