Francis Davis is Professorial Fellow in the Institute on Ageing Population at the University of Oxford and until recently a non-executive director of an NHS Trust.
It became apparent this week that the National Institute of Clinical Excellence has issued new guidance on how NHS staff should go about choosing who should be refused critical health care in the coming weeks.
Even though these proposals emerge from a bureaucratic backwater, they are a recipe for which the Government and Parliamentarians, as they pass emergency laws, will be held personally responsible. They recommend focusing the refusal of critical clinical care on the most vulnerable members of all our families.
At first sight, NICE’s guidelines are a charter of permission to turn away those with dementia. Given that some dementias come and go as they progress, this might be considered controversial in its own right. On closer observation, though, NICE goes further still to list anyone who is ‘confused’, struggling with communication or needing sustained support falling clearly into the cohort of citizens who must be turned away.
In what are going to be stretched times, this is a license to cut corners and set aside those with lives still to live.
Coronavirus will cause heads to ache, throats to get sore and pneumonia to rise.
As a result, many who do well enough under normal circumstances may struggle at home to take medications in coming days. Others may not receive visits upon which they rely, the absence of which will accelerate their frailty for a while.
In such circumstances those with long-term conditions, such as Multiple Sclerosis or Motor Neurone Disease, may have a period of increased vulnerability. NICE’s guidelines, as presently drafted, would have them excluded from critical care. Imagine Stephen Hawking with Coronavirus, but without carers and a voice-computer to communicate being left to die.
No surprise, then, that parents and carers of those living with autism, cerebral palsy and learning disabilities are concerned. Those concerns are not assuaged by NICE simply saying it forgot their existence in designing the policy and will have another crack.
What will lack of communication and vulnerability look like in Asian or other BME communities? Doctors, drafted in from out of region, might encounter for the first time languages found in density in certain communities that they do not know, or be unfamiliar with the complications of, say, diabetes and sickle cell anaemia that might be concentrated in others. Could there be inadvertent selection for removal of critical clinical care by race or religion?
Meanwhile, a child who ought properly to have access to Child and Adolescent Mental Health services may find such lists effectively closed for the time being and become profoundly confused, while a girl with an eating disorder may not manage a daily walk to collect food.
Both, having reached for an overdose as a coping mechanism, may encounter the prejudice against their plight that is so often the experience of their carers at A and E in normal times.
For adults, some anti-psychotic drugs, if not taken for as few as three days, can leave those living successfully in the community back at square one, chaotic and extremely poorly indeed. On catching CV-19, will all these be let go first because they seem confused, dependent and uncommunicative?
The challenge here is that guidance is usually ‘tested’ by being mailed out to a short list of friendly ‘consultee’ organisations that, typically, operate within the realm of their own concerns. It is then cascaded to local NHS Trusts and accepted, often unblinkingly, as the fruit of ‘national best practice’.
Assessing its veracity can be further diluted by lack of cross-cutting insight, and will be under immense pressure in the next months by the likely reduction of scrutiny via NHS Trust quality, equalities and assurance processes which even at the best of times can leave a good deal to be desired.
Even without current pressure it is not so long ago that the short cuts taken and poor processes adopted, at the Gosport War Memorial Hospital, had to have light forced upon them by a resistant local health system. If, because of NICE’s lack of insight and sensitivity to need, the pain experienced by the families of those victims were to be replicated nationwide in the current crisis social division and resentment would rightly and quickly become the order of the day.
It will not be enough to cite ‘international advice’. NICE may be looking, in its hurry, to international institutions for support. Many of those though have long -tanding habits of commending health systems which ‘discount’ the value of any spending on disabled, vulnerable or older people. It is only relatively recently that the World Health Organisation committed to stopping the use of algorithms for health finance calculations that automatically suggest such populations are a waste of resource.
If sweeping regulations like these can be slipped out into the public realm without them making their way through the Cabinet and the Prime Minister’s daily briefing then others with equally devastating potential might follow suit.
A One Nation Cabinet and a Parliament of national emergency will have to take back ethical and practical control. It ought to have the will to act against such a threat to the thousands who would be impacted and be willing to find the resources to mitigate that threat.
From the despatch box, Ministers can give assurance that they will have guidance carefully re-written and protections put in place for the weak. They can undertake to enhance reporting and transparency of these matters in the months ahead instead of them being given greater leeway and less emphasis.
In turn, as they amend emergency laws, Parliamentarians can ensure that strengthened safeguards are written into the letter of the law. Locally, they can keep their local hospitals under close scrutiny and their voters briefed .
After this is over they will have to look us in the eye and explain how they played their part in keeping our families safe. Telling us that choosing our vulnerable aunties, uncles, mums , dads , daughters, sons and neighbours for the removal of critical care first ought not be a legacy with which we rest content.