New guide to support people with learning disabilities challenge unlawful resuscitation orders

A guide to help people with learning disabilities, their families and care staff challenge unlawful resuscitation orders has been drawn up by two campaigning organisations.

Turning Point and Learning Disability England (LDE) drew up the checklist to help protect the rights of people with learning disabilities who fall ill with coronavirus.

It comes amid a reported rise in GPs and hospitals issuing “do not attempt cardiopulmonary resuscitation” (DNACPR) forms without consulting patients or their families.

An order not to attempt resuscitation should be made with the individual’s consent and their family’s whenever possible, the law states.

According to an LDE survey in May, one in five (20%) of 88 member organisations said they had seen DNACPRs placed in people’s medical records without consultation in March and April.

While the NHS and ministers have said that the blanket use of DNACPRs is unacceptable, unlawful orders are still being brought to the charities’ attention.

Turning Point has challenged 22 orders since April, compared to an average three a month being called into question before the pandemic.

The charity said a doctor had suggested one man’s quality of life would not be “worth it” if he needed to be resuscitated with CPR.

The man’s father, a widower in his 80s who lives alone, said: “He (the doctor) rang me out of the blue. I’d never not want to resuscitate him, I want him saving. I’ve been fighting for him all his life. He’s all I have and comes to see me almost every day.”

The document aims to help families and carers raise concerns and questions which can be a “both complex and daunting” process.

This includes asking questions such as whether the patient was told about the decision to discharge them from hospital with a DNACPR order, and why the decision was made.

It advises people who believe an inappropriate order has been made to raise a safeguarding concern with the relevant local authority and also includes template complaint letters to challenge decisions.

Marie-Anne Peters, who along with her sister overturned a doctor’s order not to take their brother Alistair, who has epilepsy, to hospital if he caught coronavirus, welcomed the guidance.

The pair were helped by Turning Point and their local health commissioners.

The 53-year-old from West Yorkshire said: “If the staff at his care home hadn’t alerted our local health commissioners or MP then who knows what could have happened. My brother has been fighting (for life) his whole life and keeps recovering. Why would we give up on him now?”

Julie Bass, Turning Point chief executive, said: “It is not only illegal but outrageous that a doctor would decide not to save someone just because they have a learning disability. They have the same right to life as anyone else.

“We hope our campaign and the checklist will help support families and care staff in challenging these orders.”

A Government spokesman said: “It is unacceptable for advance care plans, including Do Not Attempt Resuscitation orders, to be applied in a blanket fashion to any group of people.

“NHS England has made this clear and the CQC (Care Quality Commission) is urgently contacting providers where this practice has been brought to their attention.

“It is vital disabled people, their families and care staff are properly supported during this global pandemic. Work is continuing to identify challenges, improve knowledge and understanding, and support health and social care professionals so they can continue to provide high quality care.”

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