What happens to people with 'dependency' in COVID-19 critical care? A look at the ICNARC audit report

 

There have been consistent worries and reports about potential discrimination against disabled people who contract COVID-19, both in terms of access to critical care in hospitals and in terms of equal treatment once in critical care. As far as I know, there hasn’t been much focus on whether there is evidence to evaluate the presence or potential extent of such discrimination.

One (far from ideal) way to look at this is by looking at the comprehensive (but inaccessible in terms of easy-read) weekly audit reports being produced by the Intensive Care National Audit and Research Centre (ICNARC). ICNARC collects and analyses information about people in intensive/critical care with confirmed COVID-19 from 289 critical care units across England, Wales and Northern Ireland. These weekly audit reports (the information I will refer to here comes from their report of 29^th May 2020, with information on people up to 28^th May) cover in great detail information about who is admitted to critical care with confirmed COVID-19, what treatment they receive, and outcomes (in terms of whether people died in critical care or were discharged alive, and for some measures 30-day survival after admission).

One of the indicators they report on is ‘dependency prior to admission to acute hospital’. ‘Dependency’ (this measure is not defined) is recorded at three levels:

• ·        Able to live without assistance in daily activities
• ·        Some assistance with daily activities
• ·        Total assistance with all daily activities

Although it is unclear who decides which category to place people into, and on what criteria (is it some kind of frailty assessment, as NICE recommends?), it is the nearest thing I know of to an indicator of need for support for activities of daily living in these kinds of audits. This blogpost will simply look at some comparisons between people not requiring support vs people requiring support, in terms of admission to critical care, access to health interventions once in critical care, and outcomes of critical care.

Admission to critical care

Up to 28^th May 2020, the audit reports information on 9,034 people admitted to critical care where there is information on ‘dependency’ (I’m going to call this ‘need for assistance’ from now on). Of these 9,034 people, 8,201 (90.8%) were people with no need for assistance, 802 (8.9%) were people with some need for assistance, and 31 (0.3%) were people with a need for total assistance. The graph shows these percentages, compared to the percentage of people needing assistance admitted to critical care for non-COVID viral pneumonia from 2017-2019.

This graph shows that a smaller proportion of people with COVID-19 admitted to critical care had a need for assistance compared to people in the previous three years with non-COVID viral pneumonia. There are multiple potential explanations to account for this difference (COVID-19 might result in more serious health consequences for a wider range of people across a wider age range than non-COVID viral pneumonia, for example), but there is clearly a difference here.

 

Treatment for people in critical care

Once people are admitted to critical care, what kinds of treatment do people get? The ICNARC audit focuses on advanced vs basic respiratory support and the presence or not of renal (kidney) support.

The graph below shows the proportion of people not needing assistance getting advanced vs basic respiratory support, compared to the proportion of people needing assistance getting advanced vs basic respiratory support. As the graph shows, 75.7% of people not needing assistance received advanced respiratory support, compared to 57.8% of people needing assistance for daily living.

There was a similar difference in people getting renal support. As the graph below shows, 26.0% of people not needing assistance received renal support compared to 19.2% of people needing assistance.

Outcomes of critical care

The ICNARC audit records whether people with confirmed COVID-19 who had been in critical care either died in critical care or were discharged from critical care alive. Of course, it is possible that people discharged from critical care could die at a later point, and it is important to note that people who stay in critical care for long periods of time are less likely to be recorded in these figures (because they are still in critical care).

The graph below shows that for people not needing assistance, 57.8% of people were discharged alive from critical care. For people needing assistance, 48.3% of people were discharged alive from critical care.

 

So far, we have seen that people not needing assistance were more likely to receive advanced respiratory support and/or renal support, and more likely to be discharged alive from critical care. Can we disentangle this a little to understand more about what is happening to people? One thing the ICNARC report allows us to do is to look at these outcomes separately for people who did and didn’t receive advanced respiratory and/or renal support.

So, the graph below reports the same outcomes as the graph above, but just for those people who had received advanced respiratory support while in critical care. Of those who had received advanced respiratory support, 48.2% of people not needing assistance were discharged alive, compared to 38.9% of people needing assistance.

 

 

And what about those people who did not get advanced respiratory support and only received basic respiratory support in critical care? The graph below shows this information. For people not needing assistance, the vast majority of people (84.9%) getting only basic respiratory support were discharged alive from critical care. This suggests that, for people not needing assistance, people with a more serious COVID-19 condition in critical care received advanced respiratory support.

For people needing assistance, a much lower proportion of people getting only basic respiratory support (56.2%) were discharged alive from critical care. It is unclear why there is this very substantial difference between people with and without a need for assistance.

 

There is a similar, if less extreme, pattern for people who got or didn’t get renal support, as the two graphs below show.  Among those getting renal support, the proportion of people being discharged alive was very similar for people not needing assistance (36.4%) and people needing assistance (35.2%).  Among those not getting renal support, a greater proportion of people not needing assistance were discharged alive (65.3%) compared to people needing assistance (51.3%).

 

There are clear differences between people needing assistance in daily living and people not needing assistance in daily living when it comes to critical care and COVID-19, according to the ICNARC indicator of ‘dependency’. There are potential differences in access to critical care, differences in access to advanced respiratory support and/or renal support, and differences in outcomes, particularly amongst those people not receiving advanced respiratory support and/or renal support. There are multiple potential explanations for these differences, one of which may be that people needing assistance with daily activities are more likely to be in high-risk groups (for example on grounds of age or health conditions associated with greater risk of a severe reaction to COVID-19). Towards the end of the ICNARC report, the authors report a very useful set of analyses investigating the risk of death within 30 days of entering critical care associated with various factors (e.g. age, ethnicity, area deprivation, body mass index, ‘dependency’) taking all the other factors into account (e.g. the fact that people needing assistance with daily living also tend to be older).

Although as yet only graphs are provided rather than tables of figures, it looks like, for people with confirmed COVID-19 in critical care, if you need assistance with daily living you are somewhere between 1.5 and 2 times more likely to die within 30 days of entering critical care compared to someone who does not need assistance with daily living. This is taking into account age and other risk factors such as obesity. This degree of risk, with the huge exception of age, is as great or greater than any of the other factors investigated in the report (sex, ethnicity, area deprivation, body mass index, immunocompromised, sedated for first 24 hours in critical care).

For all the big differences in access, treatment and outcomes for people needing assistance with daily living that I’ve pulled out of this excellent audit report, I’m not hearing the clamour for rapid reviews, inquiries or action that have rightly been raised when other dimensions of disadvantage have been revealed. Another, material difference as we face the second spike.

  

A dereliction of death duty

So far in this pandemic (where I suspect we are only at the beginning), in my blogs and social media I have tried to be measured and constructive, trying to provide useful information and analysis and indicate what is possible in terms of types of information urgently needed about people with learning disabilities, autistic people, and disabled people more generally.

So far, we have seen published information and analyses of deaths related to COVID-19 (and often, crucially, all-cause mortality) in England by: age; sex; ethnicity; area deprivation; location; 'dependency'; location of death; care homes (and this is only what comes to mind right now). All of these issues (some of them after some pushing by the media) have been picked up as crucial for understanding potential inequalities, and are triggering rapid reviews and research, and influencing policy and practice.

Meanwhile, published information about COVID-19 and people with learning disabilities, or autistic people, remains (as far as I know) precisely zero. Absolutely nothing. Right from the start of the pandemic, many people have been pushing for information about COVID-19 infections, testing and deaths (both COVID-19 related and of any apparent cause) to be released concerning people with learning disabilities and autistic people. The response from NHS England/Improvement has been a complete brick wall, even it seems to many of their own staff (someone within NHSE/I contacted me recently to ask if I knew of any statistics concerning deaths amongst people with learning disabilities).

And then there was this tweet from Rebecca Thomas at HSJ, who has assiduously been asking questions of NHSE/I for months.

Yes, that does say NEXT YEAR. 2021. Remember, the publication of the first LeDeR report two years ago today (4th May) was the occasion of a huge row, as NHSE/I delayed its publication by several months, published it on the day of local election results, and then tried to claim it had nothing to do with the publication date. 

Before I get to what organisations could do, within 24 hours, to publish information about infection rates and deaths amongst people with learning disabilities (and, for some things, autistic people), here are some urgent questions about the LeDeR programme.

• What will be the publication date of the 2021 LeDeR report containing the information on COVID-19 deaths amongst people with learning disabilities? No-one knows (by no-one I am referring to the public, including people with learning disabilities and autistic people, as we are clearly the nobodies here).
• What is the future of the LeDeR programme? No-one knows.
• The current contract finishes at the end of May (yes, in 25 days' time) - will there be an extension to the LeDeR contract? No-one knows. 
• Will a contract be signed with an organisation other than the University of Bristol to continue the LeDeR programme, and how can effective handover be expected to happen in this timescale? No-one knows.
• LeDeR reviews done by NHS Trusts are currently suspended, judged inessential during the COVID-19 pandemic - will they ever resume? No-one knows.
• Notifications of deaths are still being made to the LeDeR programme (the basis for the secret reporting on deaths) - if there is no contract beyond the end of May, will these notifications just stop being recorded? No-one knows.
• The LeDeR programme is set up as a 'health improvement' programme (through quangoid HQIP) rather than a research programme, so what happens to all the data from the LeDeR programme - does it have to be destroyed under the terms of the contract? No-one knows.

That NHSE/I is not being straight with the public about any of these questions should be a national scandal.


So - these are things that NHSE/I in particular, and also CQC, could do WITHIN 24 HOURS, to publish information about the impact of COVID-19 on the lives of people with learning disabilities and (sometimes) autistic people.

What NHSE/I can do NOW

1)      NHSE/I have weekly summaries of notifications of deaths to the LeDeR programme, hopefully including both COVID and deaths from any recorded cause (LeDeR notifications collect this information). Publish it NOW.

2)      NHSE/I have told Rebecca Thomas that their reporting of COVID deaths of people in acute hospitals can be broken down by learning disabilities and other 'underlying conditions' (it's a scandal in itself that NHSE/I is saying learning disabilities, or autism, are 'underlying conditions' - showing a revealing lack of understanding). These analyses could start now, and be reported for the whole period retrospectively. Maybe they've been done already and not released? No-one knows.

3)      NHS Digital collect information for NHSE/I on people with learning disabilities and autistic people in specialist and mainstream mental health inpatient units. As yet, I have seen no public data on COVID-19 infections or deaths amongst anyone at all in mental health inpatient services in England. The data are collected continuously and reported on for people with learning disabilities and autistic people monthly:

a.  Commissioners are regularly reporting all sorts of information (including the number of deaths) for the Assuring Transformation dataset. Weekly reports of the total number of people dying in these specialist units can be produced NOW – the proforma that commissioners complete could also be amended to ask for more detail on deaths. At the moment we are hearing about people dying in inpatient units from the local press, rather from the national organisation allegedly responsible for people in these places.

b.  NHS Digital uses the MHSDS (data provided by service providers on all mental health inpatient units) to extract information on people with learning disabilities and autistic people in both specialist and mainstream mental health inpatient units. Could this dataset be used to provide some timely information on the deaths of autistic people and people with learning disabilities in mainstream mental health inpatient units as well as specialist units?

What the CQC can do NOW

The CQC started a little late, but in the notifications of deaths that are required to be sent to them (both in relation to registered social care services, and separately in relation to be detained under the Mental Health Act) they now require information on suspected COVID-19 deaths as well as causes of death recorded on death certificates. This information is now being collated and analysed nationally, with data on care homes used in the national COVID death public reporting and weekly data on the number of people dying in care homes, and through a separate reporting route on the number of care homes with a COVID-19 outbreak. Given the information that CQC already have and publish monthly in their care home directory, it is technically straightforward for CQC to quickly analyse and publish weekly information on:

1.  COVID-19 and all-cause deaths notified to them, broken down by:
• Primary care need of the people using the service within which the death took place
• Age band
• Type of registered social care service (including care home with nursing, care home, domiciliary care)
• Location/local authority area (for some types of service), which could also be used for area deprivation indicators
• CQC ratings (both overall and specific)
• Number of places (for care homes with nursing and care homes)
• Organisation running the service

For speed, an analysis of COVID-19 and all-cause deaths of people using social care services supporting people with a primary care need of learning disabilities or autism, broken down by type of social care service and broad age band, could be done first.

     2.  COVID-19 and all-cause deaths notified to them of people detained under the Mental Health Act. This could be done quickly, followed by analyses broken down by ward type according to CQC inspection regimes.

All of the above analyses either have been done secretly, or could be done (and published) straightforwardly.

As I said at the start, I really have tried to be constructive and measured since the start of the COVID-19 pandemic about the lack of information concerning COVID-19 and all-cause deaths of people with learning disabilities and autistic people. All sorts of people and organisations have been scrambling to get sensible information collected and analysed, at unparalleled speed, in very difficult circumstances. 

But this level of wilful obstruction in making basic information available about these groups of people, while ever-more detailed and nuanced information is available on so many other aspects of COVID-19 infections and deaths, really makes me think NHSE/I are trying to hide something. As John Dean, White House Counsel turned whistleblower, said to President Nixon during Watergate "It's not the crime; it's the cover-up that can get you in real trouble."