A reminder on advance care planning for people with a learning disability and or autism

NHS England’s latest letter on Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decisions for people with a learning disability and or autism is a reminder to those caring for the vulnerable elderly and or people with a learning disability and or autism of the need to ensure that care planning takes place as a wider conversation regarding a person’s preferences, wishes and needs related to their future care.

 NHS England wrote to health and care clinical leads at the start of the pandemic with a reminder of the importance of the appropriate use of DNACPR decisions for people with a learning disability and or autism. This followed concerns reported by King’s College London that “there were still a significant percentage of cases where good practice in DNACPR decision making was not demonstrated” in 2021.

Readers will recall concerns were raised in the care sector about the lack of understanding of the use of DNACPR decision making which led to the CQC undertaking a review of the use of DNACPR decisions during the pandemic. While the regulator did not find a blanket approach to DNACPR decisions, it did find there was “undoubtedly confusion at the outset of the pandemic”.

It has since been necessary for NHS England to write again to local and national clinical teams with the following reminder:

“…of the importance of implementing the Universal principles for advanced care planning and ensuring that DNACPR decisions for people with a learning disability and autistic people are appropriate, are made on an individual basis and that conversations are reasonably adjusted.

The NHS is clear that it is unacceptable that people have a DNACPR decision on their record simply because they have a learning disability, autism or both.

The terms ‘learning disability’ and ‘Down’s syndrome’ should never be a reason for DNACPR decision making, nor used to describe the underlying, or only, cause of death.”


NHS England’s letter is a worthwhile opportunity to remind those working in the NHS and in care homes of the guidance surrounding DNACPR decisions. Do get in touch if you’d like support with training or your policies.

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