The family of a 51-year-old man with Down’s syndrome have launched legal action against an NHS Trust after a do not resuscitate (DNR) order was put on his file without his family’s knowledge (14th September 2012). 


The man, known only as AWA for legal reasons, is taking action against East Kent Hospitals University NHS Foundation Trust. He is being represented by a litigation friend who is a family member and also cannot be identified.


The case follows on from an incident that took place last year. On September 7, 2011, AWA, who has dementia and is fed through a tube in his stomach, was admitted to Queen Elizabeth the Queen Mother Hospital in Margate, Kent, where he remained until September 26. 


But, following AWA’s discharge back to the residential home he lives in, staff found the DNR. The DNR states that it is “indefinite” in duration and that the rationale for withholding resuscitation is that AWA had “Downs syndrome, unable to swallow (PEG fed), bed bound, learning difficulties.” It also says that no discussion was held with his next of kin because they were “unavailable”.


However, throughout his time in hospital his family visited virtually every day and his parents attended a meeting, organised by clinicians caring for him, to discuss his feeding tube. In addition, a carer from AWA’s residential home was also present at the hospital on multiple occasions. 


None of AWA’s family or staff at the residential home had been made aware of the DNR. 


Following discovery of the DNR, AWA’s mother complained to the Trust, and although an acknowledgment that failing to have a discussion was wrong and “not expected”, apologies were offered from the Trust without any acknowledgment of any wrongdoing.


East Kent Hospitals University NHS Foundation Trust says it complied fully with guidance from professional bodies.


Mr X, AWA’s litigation friend, said: “We were all shocked to find out about what had been put into AWA’s notes without our knowledge. One member of the family at least was in the hospital practically every day and could have been consulted about the decision. 


“We are bringing this action to highlight the issue and to make sure that something like this cannot happen to another loved son and brother.”


Merry Varney from the human rights team at Leigh Day & Co, which is acting for AWA, said: “This is definitely one of the most extreme cases we have seen of a DNR order being not only imposed on a patient without consent or consultation, but to use Down’s syndrome and learning difficulties as a reason to withhold life-saving treatment is nothing short of blatant prejudice.


“If an individual was physically preventing a doctor from administering life-saving treatment to a disabled relative, it would undoubtedly be a matter for the police, yet we see doctors taking this decision without consent or consultation regularly. 


“The absurdity of this is highlighted by the contrast with cases where people wish to end their own lives.”