24 February 2022

This week, Stop People Dying Too Young published an open letter to Maria Caulfield MP, Chairperson of the Ministerial Oversight Group on Do Not Attempt Cardiopulmonary Resuscitation (MOG). The letter was produced in collaboration with Difference North East, Learning Disability England and the British Institute of Human Rights.

Who are Stop People Dying Too Young?

Stop People Dying Too Young is a group of self-advocates including people with learning disabilities, autistic people and family carers. 

Who are the MOG?

The MOG is a group set up by the Government, tasked with finding solutions to problems with how some Do Not Resuscitate decisions were made during the Covid pandemic. Some groups of people were particularly affected by this poor practice – people with a learning disability, older people, people with dementia and people from Black, Asian and minority ethnic backgrounds.

However, no-one with lived experience from the groups who have been particularly affected by this has been invited to be part of the MOG. After being excluded from the decision making that led to Do Not Resuscitate decisions being made about their own lives, people with a learning disability are now also being excluded from the work to put this right.

What is the letter about?

The letter is in Easy Read and calls on the MOG to involve people with lived experience as equal partners on the MOG. It points out that the MOG's terms of reference says they can change their members if they see a need for other people to be included and asks them to do this now as need to hear the voices of those most affected.

 Click here to read more about BIHR's work with Stop People Dying Too Young on this campaign.

“People with lived experience are the experts on why some groups of people were discriminated against during Covid around how Do Not Resuscitate was used. Unless people with lived experience are part of the Ministerial Oversight Group, poor practice around DNACPR will keep happening and will not be challenged strongly enough.[...] We are asking for real involvement, where the Ministerial Oversight Group recognises the expertise people with lived experience bring as being equal to their own professional experience."

Becki Parker, Stop People Dying Too Young Group

Click here to read the letter

Click here to join the campaign