Turning Point and Learning Disability England co-produced this information pack with the help of different people and organisations.
These include self-advocates, family members and advocacy organisations. Expertise was also provided by academic specialists, the National Mental Capacity Forum, CQC and NHS England.
This online DNACPR information pack is for people who have a learning disability. They may read it with somebody else - maybe a friend, a member of their family, or a support worker. It may also be a useful resource for people who work in healthcare, or provide support to people with learning disabilities. There is a downloadable PDF version inside the pack.
The information pack includes:
- Information about DNACPR recommendations, when DNACPR might be the right recommendation, what should happen when a DNACPR recommendation is made
- Information about DNACPR and the law
- The DNACPR Checklist - what the doctor should tell you about a DNACPR recommendation, and what you should tell a doctor if you have been thinking about DNACPR
- Useful resources including examples of DNACPR forms and a letter template you can use if you want to raise a concern about a DNACPR recommendation
- Information on where you can get help, or find out more about DNACPR on other websites
- A Top Tips poster on DNACPR from people with lived experience that you can print out
DNACPR stands for Do Not Attempt Cardiopulmonary Resuscitation. It is a recommendation from a doctor that CPR is not performed on someone when their heart stops. "Learning disability" should never be a reason for a DNACPR recommendation. The 2022 LeDer review (an annual review of the lives and deaths of people with a learning disability and autistic people) found that where a DNACPR was in place at the time of death, DNACPR documentation and processes were not correctly completed and followed in over one third of cases.
'There was a general lack of awareness and confidence among people, families and care workers about what a DNACPR decision meant, and how to challenge this.' - Care Quality Commission (CQC)
'Sometimes we don’t know how to challenge and it's really important we understand what to do about it and who to go to.' - Mel, Support Worker
'It’s not an illness: a learning disability. You’re born with a learning disability, but you don’t die from it.' - Brian, Self Advocate
'We’re all human, we’re all equal – and no one should be discriminated against.' - Linda, Family Carer
