Recording and analysing COVID-19 related deaths amongst people getting social care and disabled people – what should be possible in England?
13th April 2020
As the number of people recorded as dying from COVID-19 related causes in official statistics in England continues to rise rapidly, there are increasingly vocal and urgent concerns being expressed that the daily figures released by NHS England:
1) Considerably underestimate the number of people dying from COVID-19 related causes in England, because they are focused solely on deaths of people in hospitals.
2) Are ignoring what are likely to be substantial numbers of people in care homes dying of COVID-19 related causes, where emerging international evidence (see, for example, this excellent summary from Adelina Comas-Herrera and Joseba Zalakain, which reports data from Belgium, France, Ireland, Italy and Spain that 42%-57% of ALL COVID-19 related deaths are people living in care homes).
3) Are ignoring the potential for COVID-19 deaths to be hitting certain groups of people harder than others, for example different groups of disabled children and adults. Data are now starting to be analysed by age, gender and ethnicity, but little seems to be available beyond these (important) characteristics.
Many people getting social care, their family members, and those supporting them are expressing alarm about what is happening, including: usual social care being reduced or withdrawn, a lack of personal protective equipment, physical separation of people from family members, a decimated workforce with little back-up support, uncertain support for daily needs like food when people and families are in self-isolation or ‘shielding’, worries about whether people will get access to the same healthcare as others if they become ill with COVID-19, the lack of testing for COVID-19 amongst people using social care, their families and support workers, and policies such as attempting to move recovering people, still with COVID-19 symptoms, into care homes from hospitals.
It is important to remember the sheer number and diversity of people using long-term social care in England, and the diversity of social care that people are getting/using. Over the course of 2018/19, 841,850 adults aged 18+ in England were getting some form of long-term social care. While almost two-thirds were people aged 65+ (65%, 548,435 people) almost 300,000 people (293,415 people) getting social care were aged 18-64. And social care is so much more than nursing or residential care homes – while there were over a quarter of a million people in nursing or residential care homes (261,665 people, although this figures excludes people funding their own social care), this represents less than one third (31%) of adults getting social care. Finally, it is worth noting that, while most people in nursing or residential care homes were people aged 65+ (215,650 people), substantial numbers of younger adults aged 18-64 (46,015 people) also live in nursing or residential care homes.
The invisibility of different groups of people using different forms of social care within COVID-19 death statistics will mean that policies and practices that are potentially disastrous for particular groups of people will not be identified and changed until it’s way too late (for many people, it is already be too late). As we have seen from the experiences of different countries so far, what countries decide to do can have a massive impact on who gets COVID-19 and what happens to them when they do.
In this blogpost, I’m going to try and set out my understanding of potential sources of information on COVID-19 related deaths amongst people using social care in England. Because of my limitations this will be an England-centric blogpost (other parts of the UK are reporting some information in slightly different ways), and a couple of the sources of information will be specific to people with learning disabilities (although most of them aren’t). These are just my ideas from looking around and from many people alerting me to potential sources of information rather than any inside knowledge.
This is also a snapshot in time (13th April 2020) which I hope will become outdated very quickly as this kind of information begins to be published very rapidly. I am also highly likely to have made mistakes and would welcome corrections. I will go through different sources of information, outlining what I think their potential is for:
1) Recording and analysing the deaths of people in different living circumstances (particularly people getting/using social care), such as care homes or people getting direct payments
2) Breaking down information on deaths by particular groups of people, for example different groups of disabled people.
These are the headline figures released every day. As NHS England report them, they are raw numbers of people in NHS hospitals (from the list of NHS Trusts reported with the statistics, it looks like this excludes people in inpatient units in specialist mental health NHS Trusts and people in independent sector inpatient units/hospitals) who have died and who have tested positive for COVID-19. Deaths are reported retrospectively, so a day’s figures might include people who died the day before, a week before and so on.
As NHS England acknowledge, these will be not be complete figures for those dying COVID-19 related deaths. First, they only include people dying in acute hospitals – although people will have been living elsewhere, including in care homes, I’ve not seen the NHS deaths data broken down in this way. Second, they only include people who have been tested, and tested positive, for COVID-19. Although testing is more widespread in acute hospitals than elsewhere, there will be some people with suspected COVID-19 who have died in an acute hospital, who wouldn’t be included in these figures.
NHS England have stated to Rebecca Thomas, a journalist for the Health Service Journal, that they do track the ‘pre-existing conditions’ of people in their COVID-19 death figures, including ‘conditions’ such as learning disability, but that they have ‘declined to share this data’.
Public Health England
Public Health England (PHE) has an online coronavirus tracker, which displays the number of confirmed cases of COVID-19 and the number of confirmed COVID-19 related deaths and can be broken down by various geographies. As far as I can tell, this online tracker uses the same information as the NHS England count of deaths and is subject to the same limitations in terms of hospital location and the restrictions of the COVID-19 testing programme. However, if NHS England can break this down by ‘pre-existing conditions’ presumably PHE can too.
Office for National Statistics
The Office for National Statistics (ONS) has started to generate information updated weekly on deaths related to COVID-19. The source of their statistics is different to the NHS England data – the ONS base their statistics on the number of registered deaths where COVID-19 has been mentioned anywhere on the death certificate. This takes longer to prepare than the daily counts from hospitals (11 days after the week’s registration data), but is broader in scope in that it includes people outside hospitals and also people who haven’t been tested for COVID-19 but where a medical professional completing the death certificate was sufficiently confident in a diagnosis of COVID-19 that they mentioned it on the death certificate.
In their analysis of deaths registered in one week up to 27 March, ONS report that there were 539 COVID-19 related deaths in total, of which 501 (93%) occurred in an acute hospital, 20 (4%) occurred in care homes and 15 (3%) occurred in the person’s own home. It is important to note both the time lag and also that this records the place of people’s deaths rather than where people were living when they contracted COVID-19 (at this relatively early point in the pandemic in the UK it is possible that people in care homes were being admitted to acute hospitals, which may not be happening as the pandemic fully hits).
The ONS also provides breakdowns of COVID-19 death data by age band, sex and region. As the data are derived from death certificates, presumably linkage to other databases would be required to make it possible to conduct analyses according to disability or co-occurring health conditions not mentioned on the death certificate.
Intensive Care National Audit and Research Centre
The Intensive Care National Audit and Research Centre (ICNARC) regularly collects audit data from hospital critical care units in England, Wales and Northern Ireland. They have been collecting information on people with confirmed (tested) COVID-19 admitted to critical care units, and have published their most recent report on the situation up to 9th April here. In terms of scope this is a restricted group of people, in that everyone has a confirmed COVID-19 diagnosis via testing and has been admitted to hospital critical care. However, this dataset also includes information on people who have survived COVID-19 to the point of leaving critical care as well as people who have died in critical care, and the report includes a lot more information on people coming into critical care with COVID-19, such as age, sex, ethnicity, Body Mass Index, pregnancy, very severe health comorbidities, and something called ‘dependency prior to admission to hospital’, scored as ‘Able to live without assistance vs needs some assistance with daily activities vs Needs total assistance with all daily activities’ (93.2% of people admitted to critical care with confirmed COVID-19 were able to live without assistance, 6.7% of people needed some assistance, and 0.1% of people needed total assistance).
ICNARC report some analyses of what treatment people get (for example whether people get advanced respiratory support vs basic respiratory support) and people’s outcomes (leaving critical care alive vs dying in critical care) by the characteristics I’ve mentioned above. If I’m reading the tables right, 71% of people needing no assistance got advanced respiratory support vs basic respiratory support in critical care, compared to 62% of people needing assistance. Just over half of people needing no assistance with daily living (50.5%) left the critical care unit alive, compared to just over a third (37.3%) of people needing assistance.
Clearly the information from ICNARC is limited in scope, but it is reporting analyses looking at different processes and different outcomes across different groups.
Royal College of General Practitioners Research and Surveillance Centre COVID-19 Surveillance
The Royal College of General Practitioners (RCGP) has a research and surveillance centre which, with the University of Oxford, is recording suspected, confirmed and excluded cases of COVID-19 reported by general practices within the surveillance network. This is open to all GP practices in England, with COVID-19 codes added to GP computerised medical record systems, and a summary of the results is published weekly. In this coding system, ‘confirmed’ cases include people where there is ‘hard evidence’ of an infection. The definition of ‘suspected’ cases is quite expansive, including people who have recently travelled to high-risk areas or are in close contact with someone with COVID-19. As this database is sourced from general practices, it should cover people in all living situations, including nursing/residential care homes and supported living, although data linkage with social care records nationally would be required for most of these analyses to be conducted.
As yet, COVID-19 related deaths have not been publicly reported using this source of information. Suspected, confirmed and excluded cases can be analysed by broad geographical region, age band, and ‘patient category’ (pregnant, risk group, other). Presumably, as this information is based on GP records, other information on GP records (such as whether people are registered by GPs as a person with learning disabilities or an autistic person) could be cross-referred against the information collected here.
Care Quality Commission Notification of Deaths
Since 2009, there has been a statutory requirement for service providers to notify the Care Quality Commission (CQC) of the deaths of people using those services regulated by the CQC in England. The CQC has recently altered its death notification forms to include whether the person’s death related to confirmed or suspected coronavirus. This source of information has the potential to provide detailed information on COVID-19 related deaths amongst people likely to be under-represented in the sources of information outlined so far. First, one set of forms is completed by social care providers for people getting/using social care in England across the whole age range. A different set of forms is completed by independent healthcare providers for people in their services and detained under the Mental Health Act. Second, the death notification forms ask for quite a lot of information that is vital for disentangling both where people lived (the service provider) and where they died (for example at home, at hospital, in a hospice etc), and the cause of death on the death certificate vs whether the person was suspected or confirmed to have coronavirus. Third, the type of registration of different services with the CQC would allow some analysis of the experience of different groups of people in relation to COVID-19 (bearing in mind that a single service can have multiple registrations).
I have not seen any analyses from this dataset yet, and I am unclear how well social care service providers are managing to complete death notification forms if their services are under extreme pressure, but it potentially seems a really important, complementary source of information. It should also be recognised that coverage from this dataset will also miss out important groups of people using social care, such as the more than 100,000 people getting social in the form of a direct payment.
The LeDeR programme
The LeDeR programme has been set up and has been running for some time to build an England-wide system for recording the deaths specifically of people with learning disabilities. While LeDeR reviewing activities have been suspended during the COVID-19 pandemic, notifications of deaths into LeDeR from any source are still happening and a question about whether the person was suspected or confirmed to be infected with COVID-19 has been added to the form. If people are still reporting people’s deaths to LeDeR, the scope of this source of information is potentially broader in terms of people’s living circumstances than any of the other data sources mentioned in this blogpost (although obviously restricted to people with learning disabilities).
Even without a LeDeR review, the information on notification forms could provide very useful information and analyses of how many deaths of people with learning disabilities are potentially related to COVID-19, where people lived and where they died, and some basic characteristics of the person.
As NHS England is ultimately in control of information coming out of the LeDeR programme, their attitude towards timely and transparent publication of potentially valuable LeDeR information (given their attitude towards the data at the top of this blogpost) does not inspire me with confidence.
Social care service providers
In some places, such as New York in the USA, consortia of large social care service providers have been compiling their own information about people with suspected or confirmed COVID-19 and COVID-19 related deaths. I have heard of at least social care service provider in England that is doing something similar, and I’m sure there are more. With some support from analysts, collating and publishing information from service provider organisations could be a really valuable complement to what is being reported (or not being reported) elsewhere.
Local authorities collecting data directly from service providers
There are also some local authorities in England who are attempting to collect information on COVID-19 infection and death rates, and workforce issues, frequently and directly from social care service providers. Linked to other local authority social care information, this has the potential to track the impact of COVID-19 rapidly and in local detail to inform local planning and decision-making. Whilst there may be issues in social care providers being able to deliver this information at points of extreme pressure, and these sets of information will not produce national figures, they can be of immense value for local decision-making, inform areas where COVID-19 pressures may hit later what the issues are likely to be, and provide the basis for tracking people and supports over time.
This may seem rather niche, but NHS Digital reports data on a monthly basis concerning people with learning disabilities and autistic people in specialist inpatient units (both NHS and independent sector) commissioned by NHS commissioners in England. This includes a line (under ‘discharge’, believe it or not) on the number of deaths of people in inpatient units in the month being reported. In the years I’ve spent looking at this dataset, due to the suppression of numbers below five, no single month has yielded five or more deaths of people in these units. If COVID-19 rips through inpatient units, it might be seen here (although specific causes of death are not reported).
Citizens’ records of deaths
In the absence of public reporting of the deaths of particular groups of people related to COVID-19, some citizens have set up open-sourced, online ways for people to report people’s deaths (with an option for a brief memorial to that person if they wish). For example, George Julian has set up a way for people to record the deaths of people with learning disabilities.
Current publicly available information concerning COVID-19 related deaths in England is extremely limited, both in scope (currently largely confined to people in acute NHS hospitals) and in terms of analyses to make visible, understand, and ultimately do something about those inequalities which many people are rightly very concerned about. Hopefully this blogpost shows that there are sources of information that can be used to get much better information about COVID-19 amongst people using a range of social care services and supports and amongst groups likely to experience discriminatory practices, such as disabled people.
It is important to note that information systems take time and dedication to set up and maintain, and limitations in their scope, coverage and capability for analysis are to be expected and understood rather than lamented for the lack of an illusory ‘perfect’ recording system. What is vital is maximum transparency and maximum speed of publication so this information can be used for action, rather than for sophisticated hindsight when it’s too late.