Long-term CJD survivor at centre of legal protection battle

A man who has Creutzfeldtjakob disease (CJD) is at the centre of litigation in a specialist court.

The man developed the rare and fatal condition a decade ago and is one of the longest survivors in Britain, judges have heard.

His case is being analysed in hearings at the Court of Protection, where issues relating to people who lack the mental capacity to make decisions for themselves are considered.

Judges in London have ruled that the man, who is in his 60s and in hospital on a ventilator, cannot be identified by journalists.

A judge had ruled that the name of the disease could also not be revealed in media reports.

Mr Justice Cohen imposed that restriction in June after being told how doctors feared that reporting the name of the disease might create an information jigsaw which would reveal the man’s identity.

But another judge has lifted that restriction after hearing arguments from journalists. Mr Justice Hayden decided reporters should be allowed to reveal that the man has CJD.

He said journalists could also report that bosses at Whittington Health NHS Trust in London had responsibility for his care and had asked for decisions to be made about future treatment.

The judge was told the man’s brother wanted him to leave hospital and be cared for at home. He said the next stage would involve a specialist assessing the man’s level of consciousness.

A judge is expected to make decisions about future care following another hearing later this year.

Mr Justice Hayden said the man’s brother was “straining every sinew” to keep him alive.

Lawyers told the judge the man had “sporadic CJD”.

They said he was not suffering from variant CJD (VCJD), which has been linked to eating meat from cows which had spongiform encephalopathy (BSE) – a condition known as “mad cow disease”.

Barrister Grant Armstrong, representing the man’s brother, outlined detail to Mr Justice Hayden at the latest hearing.

He said the man developed CJD a decade ago and one was “one of the longest survivors” in Britain.

The NHS website says symptoms of CJD include loss of intellect and memory, changes in personality, loss of balance and co-ordination, slurred speech, vision problems and blindness, abnormal jerking movements and progressive loss of brain function and mobility.

“Most people with CJD will die within a year of the symptoms starting, usually from infection,” it says.

“This is because the immobility caused by CJD can make people with the condition vulnerable to infection.”

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