People with learning disabilities or autism have the same rights as anyone else to be fully involved in decisions about their own lives, including in matters of life and death. By Julie Bass

Front line workers are doing their utmost to keep us all safe and save lives, despite the unprecedented pressure placed on services by coronavirus.

However, despite their heroic efforts, a worrying trend is emerging within the health and social care system. People with learning disabilities and autism are having Do Not Attempt Cardio-Pulmonary Resuscitation or Do Not Resuscitate instructions unlawfully written into their patient records.

If a person has capacity to make a decision about CPR themselves, they must be consulted about such an instruction being placed on their records. If the person lacks capacity to decide for themselves about CPR, then the doctor making the decision on their behalf must follow the procedures set out in section 4 of the Mental Capacity Act. This includes consulting the person themselves, anyone caring for them, and anyone else interested in their welfare, including family. The purpose being to determine what the person’s wishes, feelings, values and preferences would be if they could decide for themselves.

We are seeing DNR orders that have not been discussed with the person themselves, the staff who support and care for them, or their families. This is very concerning as it may potentially lead to people being denied life-saving treatment that other patients would be granted.

National medical director Professor Stephen Powis has said that learning disabilities should never be a reason for issuing an order not to attempt CPR.

Not a new problem

Though we are seeing many more of these DNR instructions on the basis of learning disability or autism, it is not a new problem. Last year’s LeDeR report recommended that the Department of Health and Social Care “issue guidance for doctors that ‘learning disabilities’ should never be an acceptable rationale for a DNACPR order”.

This a human rights issue. Even during such testing times as we are in now, these freedoms are sacrosanct and protected by the Human Rights Act (1998), Equality Act (2010) and United Nations Convention on the Rights of Persons with Disabilities (2006).

Existing health conditions or impairments, that are unrelated to an individual’s chance of benefitting from treatment, must not play any part in decision-making regarding equal right to access such care

Within Turning Point we’re receiving an unprecedented number of DNRs which do not meet legal requirements. The amount over the past month is the same we’d normally have to challenge over a whole year. Our experience echoes reports from the British Institute for Human Rights of doctors issuing DNRs without consultation.

That some of the most vulnerable individuals in society are not having their voices heard is deeply disturbing, but worse is the fact that some decisions about their right to life are being made without extensive consultation.

To try and help halt this practice, I’ve put my name to letters issued by National Voices and Disability Rights UK which call for changes to be made regarding how these decisions are made. The recommendations include that the value society puts on lives must not influence decisions to treat.

Another key demand is that existing health conditions or impairments, that are unrelated to an individual’s chance of benefitting from treatment, must not play any part in decision-making regarding equal right to access such care.

The fact that those with learning disabilities or autism might have significant levels of social care and support needs – or that they may do so in future as a result of the pandemic – should not make health staff believe they won’t benefit from medical interventions.

People with learning disabilities or autism have the same rights as anyone else to be fully involved in decisions about their own lives, including in matters of life and death.

It is encouraging that NHS England’s national medical director and chief nursing officer have responded to the Disability Rights UK letter by supporting its aims. They have also committed to showing those with learning disabilities and autism dignity and compassion over this period.

As the crisis continues, I do understand that clinicians may have to make difficult decisions about who to treat and who not to treat. These decisions must be transparent, taken case-by-case and based on every life having equal worth.

I’m committed to championing this cause because the benchmark of a decent society is illustrated through how we treat the most vulnerable.

The current challenges in no way change the importance of compassion and dignity being at the heart of all we do.