Hints of return to the dark ages

When it emerged last year that learning difficulties had been cited as a reason for death, or as a reason to issue a “do not resuscitate” order, there was justified outrage.

But the issue has again reared its ugly head during the coronavirus pandemic, with plentiful reports of DNR instructions being written unlawfully into the care plans of LD residents in care homes.

Despite many of these initial letters being chalked up to panic, it does seem those with a learning difficulty or autism have been an afterthought throughout the pandemic.

Full resumption of the programmes aimed at improving the care for people with learning difficulties or autism is likely to be a long way off.

National leaders will need to be mindful that any covid-19 pause on progress across main programmes does not send the overall agenda of improving care for learning difficulties and autism back into the dark ages.

Transforming Care

A few key areas have already been impacted.

Let’s start with Transforming Care. NHS England missed its 2020 target to reduce the number of learning difficulties and autism patients within inpatient units.

Speaking with some providers of LD residential care, there was a concern that discharges have all but stopped during the pandemic.

They said any acquisitions of residential housing are likely to have been paused, while restrictions on external visiting, even from external clinicians, means the discharge process has greatly slowed.

Crisis prevention — the other often-not-talked-about end of Transforming Care — will also not be running as normal for a while. As these services were sparse to begin with, there is a risk, as with mental health services, we will see more patients falling into crisis and being admitted.

Reviewing deaths

Reviews under the learning difficulty and mortality review programme have stopped in most areas, as clinicians were needed on the front-line. This will certainly mean an increased backlog.

Furthermore, the annual LeDer report is usually published in May or June. If the report is to be published, it will have to be done so before the Parliamentary summer recess.

However, there is the question of whether it should be officially delayed to allow for the inclusion of an analysis of covid-19 deaths.

Considering the issues with DNR letters discussed above and the risk the pandemic could widen health inequalities, there is a clear argument for this.

If the LeDer report is not delayed, Public Health England, NHS England and Improvement and the Department of Health and Social Care should come up with a way for this analysis to be done this year, ideally commissioned to an independent organisation. 

No safety net

Finally, how about all those national agendas aimed at improving poor care and standards within inpatient units?

The children and young people’s taskforce, for example, and the more recent instruction from NHSE for commissioners to regularly visit patients.

The spotlight given to improving standards of care within inpatient units for those with autism or learning difficulties has largely been driven by the exposure of horrifying scandals.

Speaking with some LD nurses inside inpatient units, a fair few raised the concern of how their patients have been negatively impacted by the pandemic restrictions.

They described increased restrictions on their leave, visits largely stopped, less social interaction between staff and patients, and some patients being unnerved by the personal protective equipment staff are having to wear.

In most places, staff will be doing their utmost to mitigate these circumstances and doing their best for patients in the situation.

However, for those handful of services where the default is seclusion and restraint, there is a concern the above conditions will lead to an increase in poor care.

As the situation stands, there is even less attention and scrutiny given to these services than normal.

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.