4 November 2021

The Stop People Dying Too Young group is made up of self advocates and family carers working in the North East on Leder – the learning from lives and death programme. The group represents the interests of people with a learning disability, autistic people, and families; it is supported by Inclusion North. Find out more about the group here

We are supporting campaign by the Stop People Dying Too Young to the UK Government about their actions on DNARs. We are doing this working alongside Inclusion North, Learning Disability England, Difference North East, and 80 other groups and individuals. 

The campaign is asking the Ministerial Oversight Group on Do Not Attempt Cardiopulmonary Resuscitation to involve people with lived experience in their work. The Ministerial Oversight Group was set up after the Care Quality Commission wrote a report called ‘Protect, Respect, Connect – decisions about living and dying well during Covid-19’. Find out about the experience-based research BIHR led with people on the use of DNAR orders, and our input to the CQC report here.

The CQC's report showed that during Covid-19 decisions about Do Not Resuscitate were made that were not in line with people’s human rights, including their rights to choices and be involved in decisions, and to not be discriminated against. Some people were affected more than others by this. People with a learning disability, older people and people with dementia were particularly affected.  Black, Asian and Minority Ethnic people were less likely to know that a Do Not Resuscitate decision had existed for them.

The Stop People Dying Too Young have co-produced a letter that to the Ministerial Oversight Group. You can read the letter here or click on the image below. Over 80 organisations have already signed the letter, showing this is an issue that lots of us have concerns about, to encourage the Group to listen and act. You can also add your name to it in support of what we are doing. If you want to support us by adding your name to the letter before 26 November 2021 you can sign here.

Find out more about BIHR's experience led research, policy and campaigns work on DNARs here.