The Right to Life

Thoughts on the implications of the UK government’s Coronavirus policies for autistic people and people with learning disabilities.

Like a lot of people, I’ve watched the emergence of the Coronavirus with a growing sense of horror. At first, I distracted myself with the knowledge that every year hundreds of thousands of people die from complications brought about by the flu. But it soon became clear that this disease is different – it kills with far greater efficiency – probably at least ten times more efficiently.

But what are the implications of this pandemic for disabled people and their family carers, in particular for autistic people and people with learning disabilities? Initial signs are worrying. The fact that Italian doctors have been making decisions about who gets to live and who gets to die has historically been the stuff of nightmares for disabled people. A history that is full of examples of how disabled people and people with mental health challenges have been triaged out of their right to life. Too often seen as an ineffective, less than optimal use of resources in times of crisis, and too often neglected out of existence.

These are of course unprecedented times. If we cannot curb the spread of the virus for long enough, in order to be able to develop effective treatments and a vaccine, the impact on our society will be drastic. The modelling of public policy interventions outlined by Imperial College London indicates that the potential impact of Covid19 could be devastating. From 500,000 dead in the case of the government taking no action to suppress the disease, through 250,000 dead if the government had continued to implement its original policy; to something hopefully significantly less if we are able to suppress and spread the outbreak over time through widespread social distancing and quarantining. How successful we are likely to be in that attempt will become evident overtime, but international perceptions of the UK’s ability to suppress the virus are low and according to a graph shared yesterday by Ed Conway at Sky News, the current increases in the number of deaths appear to be tracking Italy.

SkyNewsGraph-23-03-2020

In the face of the scale of this potential devastation, it will be all too easy for the rights and lives of disabled people to become an after-thought, not so much as an act of deliberate policy, rather more as one of omission and ultimately exhaustion.

At the moment it is unclear to what extent the government believes that it will be able to respond to the individual needs of disabled people who contract Coronavirus, and in particular autistic people and people with learning disabilities. What is clear, is that over the coming weeks the healthcare system will be at full stretch and worse, and often decisions about life and death will be made in moments by practitioners who will be working way beyond the limits of their capacity and endurance. It is therefore unsurprising that the government is attempting to use the Coronavirus Bill to reduce the administrative burden on frontline staff so that they can focus more of their resources on fighting the virus and keeping people well. What is less clear, is whether the proposed changes will deliver what the government is hoping for and perhaps more importantly exactly what form of care, the government has modelled for autistic people and people with learning disabilities who contract and become unwell with the Coronavirus given that according the Imperial College Study 30% who show symptoms.

So, what kind of care pathways can autistic people and people with learning disabilities expect if they contract the Coronavirus? The honest answer to this is that we don’t know. I’ve just done a search on the Coronavirus section of the NHS England website which produced no results. The Public Health England Website has a range of guidance some of which is partly relevant. For example, the Guidance on Care in residential homes which outlines steps for how a person can be isolated in the home. There is also guidance on what to do if somebody who is living in supported living contracts coronavirus which essentially boils down to the following –

If the individual receiving care and support has symptoms of COVID-19, risk to their health and wellbeing must be assessed and appropriate action taken.

The guidance from the voluntary sector isn’t much more helpful. Mencap’s website had a good easy read summary document of what coronavirus is and what people should do up to the point at which they think they might have caught it. At which point it is suggested that they browse the NHS 111 website. There is, however, no evidence anywhere of a specific care pathway adapted to the needs of autistic people and people with learning disabilities once they go into hospital.

As things stand, we don’t know if carers or parents would be expected, or allowed, to accompany people with learning disabilities onto isolation wards in general hospitals. If this is not possible and a person cannot be left alone, what happens then? The only possible clue that I’ve been able identify comes from Simon Stevens urgent next steps letter –

Mental Health, Learning Disability and Autism providers must plan for COVID19 patients at all inpatient settings. You need to identify areas where COVID19 patients requiring urgent admission could be most effectively isolated and cared for (for example single rooms, ensuite, or mental health wards on acute sites). Case by case reviews will be required where any patient is unable to follow advice on containment and isolation. Staff should undergo refresher training on physical health care, vital signs and the deteriorating patient, so they are clear about triggers for transfer to acute inpatient care if indicated.

And in addition to that, the Coronavirus Bill which seeks to suspend a number of Local Authority responsibilities under the Care Act and which amends sections of the Mental Health Act.

The section from the Simon Stevens letter would seem to indicate that inpatient hospitals are likely to be the go to, treatment provider for autistic people and people with learning disabilities who need hospitalisation and who are unable to “follow advice on containment and isolation”. Which would tie in with proposed changes to the MHA Act which make it easier to detain people under the MHA and also make it easier to medicate people without their agreement.

In addition to this – according to an opinion piece published by Doughty Street Chambers:

Plainly the case for freeing up the time of health professionals including psychiatrists is unanswerable. The key changes are the loss of the requirement of the second medical recommendation in applications for detention; and the loss of the SOAD (second opinion appointed doctor – my parenthesis) requirement in the cases of those who did not consent or could not consent to treatment by medication after three months…

…The effect of dropping to 1 doctor will save significant person-power. There are 30,478 hospital admissions per year, an average of 2,540 detentions per month. Some MHA assessments do not result in a detention and there are no statistics on how many assessments result in a detention. This is a significant resource that could in the interim be deployed elsewhere.

If I am right and increased reliance on inpatient hospitals is what is being considered. And let’s be honest this is simply conjecture, but if I am right then it is probable that during the pandemic the number of people detained and treated under the MHA would increase significantly. In normal circumstances the idea of this happening and the idea of reducing the legal safeguards that protect people who are being detained under the MHA would be abhorrent. But in the circumstances that we are faced with, for some people, people who may struggle to cope alone with the trauma of an isolation ward, is there an alternative? But if this is what is happening the government and NHS England need to be upfront about it because laying the foundations and then springing it on people when they are unwell and in crisis would be beyond cruel.

But as I’ve said, this is just conjecture. At the moment, officially all we have is a vacuum. If the government wants autistic people and people with learning disabilities to survive this pandemic as well as any other community, it must ensure that it has a plan and it must ensure that people across the country are aware of what that plan is. Because if it doesn’t, autistic people and people with learning disabilities will once again be deprived of their rights – except this time it won’t be their freedom – it will be their right to life.

About MLB

Carer, Developer, Social Researcher and Activist
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