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."