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Focus on the deaths of those with mental health illnesses, learning difficulties and autism has come far too late in this pandemic.

It is well known these groups of individuals often have multiple co-morbidities and a higher rate of poor physical health compared to the general population. Those with learning difficulties have a higher rate of respiratory conditions, for example, while there are higher rates of smoking and obesity for those with serious mental illness.

Considering this, the risks of covid-19 to these individuals should have been part of the focus from the beginning.

Public Health England has now said it will be analysing data from the learning disability mortality review programme, in respect of coronavirus. HSJ has heard there are potentially hundreds of cases.

Following pressure on this issue, NHS England and NHS Improvement have also committed to publishing data on the deaths of these people within NHS organisations. The data is also likely to include private providers which have a contractual duty to report deaths.

Both are very welcome and could crucially reveal a disproportionate impact of covid-19 on these groups.

However, there will be things the numbers won’t tell us, and it is not yet clear what data source the regulator will be using.

The regulators’ daily deaths data is based on trust submissions to its central portal.

According to this data so far, there have been 51 deaths within standalone mental health hospitals and 284 across combined mental health, learning difficulty and community trusts. Across the latter we don’t know if the deaths occurred within community hospitals (for physical health) or inpatient units.

The new data should break this down, but there’s still a potential issue around which deaths are included on the portal. Before 1 April, the portal was only accepting deaths with a confirmed positive test.

HSJ knows of at least one trust which has not featured in the data but should have, while Cygnet Healthcare said it has reported two patients die following covid-19 within their hospitals. Again, these cases have not appeared in the daily data. 

Testing came later to mental health trusts, so if the new data is still going through the national portal there could be a risk of patients being missed.

Furthermore, NHS England and Improvement have said “pre-existing conditions” are recorded in its daily deaths data. But unless the submission form specifically asks for it, learning difficulty, mental health or autism patients who died within an acute setting may not have their diagnosis recorded.

Finally, the data to be published this week, HSJ understands, will not include care homes and those in social care community settings such as residential housing.

This will be a huge gap in the picture which will eventually need to be addressed.

The Office for National Statistics said they cannot provide a breakdown as they are limited to what is placed on death certificates.

This is potentially where the Care Quality Commission could step in – the deaths of residents will have to be reported to them and so a rough analysis could be done on those deaths reported specifically by homes providing care for learning difficulty and mental health needs.

Ultimately the figures alone will not tell us the circumstances of these individuals’ deaths - this will be particularly important for those who died within mental health inpatient wards as there needs to be questions over why they were not transferred to an acute trust.

Mental Health Matters is written by HSJ’s mental health correspondent Rebecca Thomas. Tell her what you think, or suggest issues she could cover, by emailing her in confidence at rebecca.thomas@wilmingtonhealthcare.com or by sending a direct message on Twitter.