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A phone call that made the world fall apart

ALI WILKIN reports on the case of Jason, a disabled teenager, who was left distraught after his GP surgery sought to place him on a do not resuscitate notice

JASON is 16, and is currently trying to work out how many people he knows who he can trust with his life. 

“Do you think this is how it felt, y’know, in Germany in the 1930s, when all those people were waiting to find out how many of their neighbours wanted them as dead as the nazi government?”

Earlier this month, Jason’s whole world fell apart. He’d been fixing himself a drink, while his younger siblings were loudly doing their school work. The phone rang, and Jason picked it up.

It was the GP’s surgery, and they were asking to speak to Jason. He identified himself and asked them why they were calling.

“We need to speak to you about putting a DNR [do not recuscitate] notice on your medical records. We need to do that today.”

Jason reminded them that he was 16, thinking they might ask to speak to one of his parents. They said nothing at all in response. Jason has chronic brittle asthma, and was diagnosed with ASD (autism) four years ago. 

“They didn’t even try to pretend it was something to do with looking after me. They might not have used the words, but they were asking me to volunteer to die if I need ventilation again.” It’s a regular occurrence in hay-fever season. 

Jason is not the only working-age disabled adult to take such a call, with some speaking out on Twitter about it.

And those living in care homes for the elderly are now being signed up en masse, with reports coming from Port Talbot in Wales, Hove in East Sussex and elsewhere. 

The Care Quality Commission is one of many medical bodies so concerned about this that it is calling for this push to be immediately halted. 

“It is unacceptable for advance care plans, with or without a DNR form completion to be applied to groups of any description,” it states. “These decisions must be taken on an individual basis and according to need.”

Indeed the hospital trust for Jason’s area confirmed that it has no policy of blanket applications of DNRs, and robustly emphasised that it continues to direct all healthcare professionals as before the pandemic — under a strong governance and consent policy that should only ever be dealt with on an individual basis. 

Which means that GPs’ surgeries are effectively receiving mixed messages, leading some disability civil-rights campaigners to warn that politics, rather than the care and needs of the patient, may be behind the apparent “confusion”.

Jason hasn’t told one of his parents about the phone call because he’s worried that they will agree to it just because the request is coming from the GP. 

He has told the other parent, who found our contact information. Jason had wanted to know if this was a breach of his rights under the Equality Act 2010. 

He didn’t need telling that this would breach his right to life, under the Human Rights Act. 

It does. The EA 2010 stipulates that where a policy, practice or procedure puts a disabled person at a “considerable disadvantage in relation to an able-bodied person” this is discriminatory and requires a reasonable adjustment to be made.

Death is a very considerable disadvantage indeed. 

There is a scene at the end of season 2 of The Man in the High Castle: a young man, the same age as Jason, and who has muscular dystrophy, has become so brainwashed by the nazi regime into believing that his disability makes his life worthless, that he chooses to surrender himself to the state in order to be put to death, thinking this to be the only possible way for him serve his country. 

Jason doesn’t accept that. He has no idea what the future holds, even whether he has a future at all in his own country. 

He hopes that there are enough good people left who can stop his government from killing him. 

But trust is only one of a number of things he’s lost, since he took that phone call earlier this month.

Ali Wilkin is co-founder of EActNowUK, which campaigns for a strengthening of the Equality Act for disabled people.

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