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usual social care being reduced or withdrawn, a lack of personal protective equipment,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.
NHS England
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.
Assuring
Transformation
Citizens’ records of
deaths
Conclusions
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.
