Do Not Attempt Resuscitation – Too Many People With A Learning Disability Still Written Off Without A Choice

Despite clear guidance that placing Do Not Attempt Resuscitation Notices (DNARs) on an individual’s notes without consent is wrong, Learning Disability England’s survey of our member organisations indicates that since the start of the Coronavirus crisis there has been some increased use of DNAR notices in the notes of people with Learning Disabilities without consultation with the person concerned, or the people who care about them.

Not surprisingly, given the threat from the virus, more attention is being paid to DNARs.

We are clear that DNAR Notices are, in themselves, not wrong. We do not want people to be afraid of having discussions about advance care planning and DNAR, or of making the choice that is right for them.

The picture is nuanced, and it should be noted that our survey found that approximately two thirds of respondents did not report an increase in DNARs.

However, despite the letter from senior NHS leaders to all NHS organisations reiterating clearly that blanket use of DNARs are unacceptable and the statements from the Royal Colleges, regulator and sector bodies reiterating this, 13 member organisations reported that they had seen an increase in blanket DNARs in March and April.

8 organisations had seen DNARs placed in people’s records without consultation in March, and despite the publicity and clear guidance, 10 reported this happening in April.

We believe that these figures are still too high.

As a direct result of the survey findings, Learning Disability England is now working with some members on additional resources that can support people to challenge poor processes or unlawful use of DNARs.

Jordan Smith, Wendy Burt and Scott Watkin, Co-Chairs of Learning Disability England’s Representative Body said: “Decisions on people’s treatment being made based on them having a learning disability are never OK – even one is too many. We are pleased to hear there are examples of people and their supporters being positively involved but we want to see all lives valued and people not fearful on others writing them off.”

Quotes from our survey

“F was discharged from hospital with a DNAR. The only reason given for why CPR would not be successful was that F has a learning disability.

Neither the support manager nor social worker were notified that the DNAR had been put in place. F has a sibling, but it is not known whether they were consulted as part of the decision-making process. The manager has lodged a complaint with the hospital.”

Quote from an organisational member

“We became aware of the guidance from NICE and from NHS Chiefs, specifically around not using the Clinical Frailty Scale or DNACPR on people with learning disabilities, Down’s Syndrome and autism. We didn’t trust that that information would reach the frontline paramedics/first responders so attached a very assertive letter to everyone’s hospital passports, with an injunction to staff to ensure they drew healthcare staff’s attention to it. So we have acted preventatively.

What I would say is that the issue is about blanket DNR but it is also about adverse triage: decisions not to take people to hospital, decisions not to escalate treatment which are equally if not more worrying for the people we support.”

Quote from organisational member

“People who would usually be admitted to hospital told that they would not receive ICU support or ventilation. These were people with no underlying health conditions.”

Quote from organisational member

“We have seen an increase in people being admitted to hospital and DNACPR being used without consulting the person or their carers, or sometimes where the only person consulted is a relative who has minimal contact with the person and therefore does not know them well.

The respect process has been beneficial in having these conversations and supporting people to make plans for future care.”

Quote from organisational member


Background to our survey

In March 2020, Learning Disability England began to hear anecdotal stories about an increase in Do Not Attempt Resuscitation (DNAR) Notices being imposed on individuals with a Learning Disability without their consent or a Best Interest process being followed.

Disabled people and their allies were alarmed at the original NICE guidance issued in March on adult critical care and the inclusion of the Clinical Frailty Scale.

There was considerable public comment and lobbying including from over 70 disabled people’s organisations and allies in late March to write an Open Letter supporting a Statement about the rights of disabled people during Covid 19.

The Medical Director and Chief Nurse at NHS England wrote to all NHS organisations on 7th April reiterating that all DNAR decisions must be made on an individual basis in consultation with the person.

Their letter reinforced the Care Quality Commission, the Royal College of General Practitioners, the British Medical Association and the Care Providers Association’s joint statement on advance care planning.

They said: “it is unacceptable for advance care plans, with or without DNAR form completion, to be applied to groups of people of any description”.

NICE clarified that the scale should not be used with people under 65 years old or adults with Learning Disabilities, and the guidance was updated following the challenges from organisations.

Learning Disability England continued to get informal reports about the imposition of DNAR without consultation and where the individual with a learning disability had no other underlying health condition.

In order to understand the extent to which this continues to be an issue, we decided to survey our member organisations who provide a range of different types of support to individuals with a learning disability.

These member organisations range from user led or small local organisations to complex national organisations. Across the membership they work with people with learning disabilities in a range of ways: support to live at home, residential care, advocacy, arts development or training for example.

We conducted this ‘snapshot’ survey between 27 and 30 April 2020, specifically concerning DNAR practices and timeframes relating to the people they support.

Read the full survey report here















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