Campaigners have written an Open Letter to the Ministerial Oversight Group on DNACPR (Do Not Attempt Cardiopulmonary Resuscitation) asking why they have failed to include people with learning disabilities in their discussion group.

The letter was written by the Stop People Dying Too Young group – a group of self-advocates and family carers who represent the interests of people with a learning disability, autistic people, and families – and has been supported by Learning Disability England, the British Institute of Human Rights, Inclusion North and Difference North East.

“Shocking” failures

The letter says people with lived experience must be at the heart of the oversight group, which is examining why some groups of people (such as those with learning disabilities) were discriminated against during the Covid-19 pandemic around how Do Not Resuscitate orders were used.

During the pandemic, 82% of people with a learning disability who died of Covid had a Do Not Resuscitate decision, but only 69% of these Do Not Resuscitate decisions were done correctly.

The letter describes these failures as “shocking” and says unless people with lived experience are “present around the table” poor practice like this will “keep happening and will not be challenged strongly enough.”

Real involvement that "recognises expertise" of lived experience 

The campaigners say that people with lived experience should have been involved from the start, and they now want the oversight group to start listening to people’s experiences.

They say it is “not good enough” that there is a group without any representation of the people directly affected by DNACPR orders, and they now want the oversight group to change the terms of reference so they include people affected.

“Unless we are involved as full group members, nothing will happen to make a big enough difference to our lives. It is both common sense and the right thing to do to work closely with people with lived experience. Otherwise things will continue to be done to people, rather than in partnership with them.

“We are asking for real involvement, where you recognise the expertise we bring as being equal to your own professional experience,” they conclude.