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NHSE: Blanket DNR orders for people with learning disabilities and autism ‘never acceptable’


By Jess Hacker
9 March 2021

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NHS England has issued a reminder to primary and secondary care staff that do not attempt cardiopulmonary resuscitation (DNACPR) orders should never be put on someone’s record ‘just because’ they have a learning disability, autism or both.

In a letter sent to CCGs last week (4 March), it said that blanket policies, whether based on disability, age or medical condition, are ‘inappropriate’.

This is particularly important in in regard to DNACPR orders, the letter said, which should ‘only ever be made on an individual basis and in consultation with the individual or their family’.

It added: ‘The NHS is clear that people should not have a DNACPR on their record just because they have a learning disability, autism or both. This is unacceptable. The terms “learning disability” and “Down’s syndrome” should never be a reason for issuing a DNACPR order or be used to describe the underlying, or only, cause of death. Learning disabilities are not fatal conditions.’

Care and consent during Covid-19

The letter emphasised the importance of ‘individual needs and preferences which must be taken account of’ when approaching advance care planning.

‘It very important that people are supported to talk about what they want and need if they become seriously ill and if they reach the end of their life,’ it said.

NHS England advised staff that patients who might benefit from an advance care plan should be encouraged and supported to discuss their individual wishes and concerns regarding their treatment preferences should they develop Covid-19 symptoms and these should be recorded in the plan.

The letter also reminded practitioners that all DNACPR decisions for people with learning disabilities will be reviewed to ensure they were appropriately determined, as set out in the 2020/21 QOF.

‘We know that the overwhelming majority of clinicians are helping patients make these important decisions in the right way and we understand that these conversations are never easy,’ NHS England said.

‘But we hope that this information is helpful to assist your understanding in how to approach advance care planning for people with a learning disability and the importance of ensuring there is no inappropriate notice applied.’

This comes after an investigation by the Care Quality Commission (CQC) found that DNACPR orders had been used in an ‘unacceptable and inappropriate’ way at the start of the pandemic.

The investigation, which was reported in December, found ‘no evidence’ of blanket approaches to DNACPR orders, but heard from individuals and their loved ones who had ‘received DNACPR decisions which were not based on their wishes and needs, and without their knowledge and consent’ early on in the pandemic.

In April last year, NHS England also wrote to GPs and other healthcare professionals asking them to avoid any blanket policies on clinical decisions during the pandemic, especially with regards to do-not-resuscitate forms.

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