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Man with Down’s syndrome sues over DNR order
Thursday 13 September 2012
Mencap criticises healthcare professionals over “discriminatory and incorrect assumptions” about learning disability following 'do not resuscitate' (DNR) order
An NHS hospital in Kent is being sued by the family of a man with Down’s syndrome, who say that a doctor placed a 'do not resuscitate' (DNR) order on their relative, because of his disability. At no point was the man or his family consulted about the DNR order.
A doctor placed the instruction on the patient’s notes, while he was in hospital in Margate last year. It gave the instruction not to provide potentially life saving treatment in the event that he suffered a cardiac or respiratory arrest.
The reasons given on the form – which covered the entire duration of his stay – were listed as: ‘Down's syndrome, unable to swallow... bed bound, learning difficulties.’
Lawyers from Leigh Day & Co, acting on behalf of the family, have described the decision as “blatant discrimination". Meanwhile, East Kent Hospitals University NHS Foundation Trust has said that it fully complied with guidance from professional bodies.
The 51-year-old man, who can only be named as AWA, has dementia and was in hospital to have a tube fitted to aid feeding. The first that he or his family knew about the DNR form was after he had been discharged from hospital, when a carer at AWA’s home found it while unpacking his bags.
Incorrect assumptions
Mark Goldring, Mencap’s chief executive, said: “We are very disappointed to hear about this case, but unfortunately, we believe that DNR orders are frequently being placed on patients with a learning disability without the knowledge or agreement of families. This is against the law.
“All too often, decisions made by health professionals are based on discriminatory and incorrect assumptions about a patient’s quality of life. People with a learning disability enjoy meaningful lives like anyone else. Yet our reports, Death by indifference, and 74 deaths and counting, highlight that prejudice, ignorance and indifference, as well as failure to abide by disability discrimination laws, still feature in the treatment of many patients with a learning disability.
“Health professions need to understand their legal duties when treating people with a learning disability, and be held to account when they fail to do so.”
Find out more about Mencap’s Death by indifference campaign
Comments
Apologies for putting another comment on here,but l have just seen report regarding learning disability services in Cornwall. In the last twelve months, over 50% percent of safeguard alerts which involved people with learning disability concerned those who were age 85 or above. Still waiting to obtain details of a laison nurse.
I am the case study officer at Mencap and it is worrying to find out about other cases of DNR orders being placed without the consultation of the person or the family. I would be interested to hear more about what happened.
I can be emailed on casestudies@mencap.org.uk or you can fill out the online story form: https://www.mencap.org.uk/webform/yourstory
Real stories help us to highlight issues that need to change.
If you feel you need help or support you can also call the learning disability helpline on 0808 808 1111.
I am going to the funeral of a Down's syndrome woman tomorrow, who was a close friend of my brother's (who also has Down's syndrome) and practically one of the family when we were growing up. Lizzie was put on a DNR order following a hospital admission, and was then denied food & water for 7 days until she died. Her mother protested, saying she felt it was cruel, but was told that was 'hospital policy' if someone was on a DNR order. The decisions medical staff are making about people with learning disabilities are akin to the policies of the Third Reich. I think it is only going to get worse with the cuts in the NHS.
I agree that both the vulnerable person and their families need to be involved in any decision making. It annoys me when decisions that involve my care are taken without my consultation. Only found recently that a referrral was lost in the system . Trust is a major problem in Cornwall.
It is disgraceful that any decision about treatment is not made with the full involvement of the person and where they need additional support their family/ advocate. As a Registered Nurse it is abhorrent that a decision such as DNR was made and especially so when it did not involve the person or their family/ advocate. Vulnerable people need to be able to TRUST the 'health profession' to do no harm, preserve life, gain informed consent and involve the person and their family/advocate when making 'best interests' decisions. This blatant discrimination MUST stop!
To be honest any doctor that decides to put a DNR (in any form) without consent of them or their family should be struck off and have legal action taken against them. Abuses like that against any person should not be tolerated. If the doctor thought they were right then they would have involved the family and respected their decision but to do what they did, was the actions of a monster. So now all the G.Ps out there should be prepared for the surge of vulnerable patients making appointments to ask if they are deemed valid enough to exist. As for suing for these abuses, they should be personally then named and shamed.
I am truely ashamed to be working and training for the NHS. If I see a doctor and or consultant do this be sure I will challenge them. I can only say that the training of adult nurses is getting better we are starting to get some training in providing nursing care for people with Learning Disabilities. Hopefully they will have the confidence to challenge things such as DNR's. I feel health care proffessional need more than just an understanding on their legal responsabilites. They need an understanding on what people lives are really like when they are home away from hospital. And try to think about the dinamics of people live not just what they see at that short period of time in hospital. Mencap you do a great job acting as an advocate please keep fighting.
I am saddened by this story, and I feel disgusted and shocked
Once again todays news sadly illustrates how hospital Trusts do not learn by their mistakes and the NHS complaints procedure is deemed unfit for purpose.
The very same EKHUT implemented an unsigned DNAR notice on my late partner. Because of my intractable epilepsy, worsened by the tragic events of trying to pursue a legal claim, having proven a now erroneous cause of death, todays events have only revived deep personal emotions.
Today, again the Trust state that they complied with resuscitation guidelines, just as their first response to me stated. BUT, once the Trust's legal department knew that they went beyond the 3 years limitation period to escape litigation, they apologised for not dating the DNAR. They have even had the audacity to state in their final reply that I can be reassured that my case will be used for educational purposes. How am I supposed to live with a death certificate stating Lung Cancer, as the sole cause of death, when it took 4 years of the NHS complaint and medical experts now deem that none of the X-Rays or CT scans, supplied by the Trust, show any definite evidence pointing towards any cancer?
THIS IS COMMON PLACE IN HOSPITALS .ONLY WE DONT KNOW IT. AND THEY DONT TELL YOU EITHER.SO ALWAYS LOOK AT THE NOTES.YOUNG OR OLD MAINLY IF THEY HAVE OTHER PROBLEMS.
ITS TOO EXPENCIVE TO SAVE SOME ONE WHO IS NOT CONTRIBUTING TO THE COUNTRY IE OLD OR DISABLED.
MY GRANDAUGHTER WAS BORN WITH RUBENSTEIN TAYBI SYNDROME .SHE HAD A HOLE IN THE HEART THAT WE THE FAMILY DID NOT KNOW AND IT WAS ONLY BY CHANCE.AFTER MANY TIME OF IN AND OUT OF HOSPITAL .A DOCTER ASKED IF THE STUDENTCOULD LOOK IN WHILE HE WAS THERE WE SAID YES AND THEM BOMB SHELL (ITS VERY UN COMMON FOR A 7 MOTH OLD TO NOT HAVE CORRECTIVE SURGERY BY NOW ) WE WENT MAD AND SHE WAS OPERATED IN A WEEK.HENCE NO MORE STUGGLING TO BREATH.SHE IS NOW A HEALTHY 13 YEAR OLD STILL HAS THE SYNDROME BUT OTHER WISE HEALTHY SO ALL WAYS ASK EVERY THINK AND GET IT IN WRITING
Another deeply worringly story. It also brings questions mark on how people with learning disabilities and indeed other disabilities are actually view upon in the health service. Did the kent hospital employ learning disability liason nurses and if they did then why didn,t they discover what the other health professionals had written? We are still lucky though to have a health system that doesn,t bankrupt people, as the case with other parts of the world