Turning Point and Learning Disability England have produced an updated guide on the do not attempt cardiopulmonary resuscitation (DNACPR) making processes to empower and inform people with a learning disability.
The pack includes information on when DNACPR might be the right recommendation and what should happen when a DNACPR recommendation is made, the law surrounding it and also what a doctor should tell a person about a DNACPR recommendation, and what a person should tell a doctor if they have been thinking about DNACPR.
There are also useful resources including examples of DNACPR forms and a letter template that can be used if someone wants to raise a concern about a DNACPR recommendation and further information on where to get help or find out more about DNACPR on other websites.
Mel, a support worker at Turning Point, who was involved in designing the pack said: “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.”
This initiative was driven by the alarming rise in DNACPR recommendations citing learning disabilities during the pandemic. NHS guidelines clearly state that learning disabilities should never be a reason for not attempting CPR, yet many decisions were made without proper consultation with the individuals or their trusted circles, such as family members or support workers.
The recent Care Quality Commission (CQC) review highlighted a general lack of awareness and confidence in understanding and contesting DNACPR decisions, further underscoring the necessity for such an educational tool.
Turning Point and Learning Disability England worked with self-advocates, family members, support workers and experts to make sure the guide was accurate, accessible and engaging. Expertise was also provided by academic specialists, the National Mental Capacity Forum, CQC and NHS England.
Turning Point chief executive Julie Bass said: “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. We are proud to have worked alongside Learning Disability England to create this vital information pack that give self-advocates and families access to the relevant information to make an informed decision on DNACPRs.”
Lou, who is supported at Turning Point’s Sycamore House in Carlisle, was one of the people who was involved, added: “Often what gets put on the certificate, the cause of somebody’s death, is learning disability. Well for heaven’s sake, you don’t die from a learning disability, you die from something else!”
