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74 deaths and counting
Wednesday 15 February 2012
Mencap report finds NHS still unsafe for people with a learning disability
Mencap is calling on the government to make the NHS safe for people with a learning disability, following the publication, today (Wednesday 15 February), of a new report ‘Death by indifference: 74 deaths and counting’, which finds continued institutional discrimination in the NHS.
The new report looks at what progress has been made since the publication of Mencap’s original ‘Death by indifference’ report in 2007.
It confirms that, although some positive steps have been taken in the NHS, many health professionals are still failing to provide adequate care to people with a learning disability. The report highlights the deaths of 74 people with a learning disability in NHS care over the last ten years – highlighted in an article in The Guardian on 3 January – which Mencap believes are a direct result of institutional discrimination and could have been avoided.
The report uncovers common errors made by healthcare professionals. These include failure to abide by disability discrimination law, ignoring crucial advice from families and failing to meet even basic care needs. Mencap believes that this is underpinned by an assumption by some healthcare professionals that people with a learning disability are not worth treating.
The report also shows there has been no systematic monitoring by the Department of Health to ensure that the health needs of people with a learning disability are being met.
Mark Goldring, Mencap chief executive, said: “The report confirms that five years on from our landmark ‘Death by indifference’ report, many parts of the NHS still do not understand how to treat people with a learning disability. At Mencap, we continue to hear heartbreaking stories of unnecessary deaths and pain.
“Although some significant steps have been taken within the NHS, where progress has been made it has been patchy and inconsistent. If the government doesn’t get to grips with this serious issue, more people will die unnecessarily.”
To end discrimination in the NHS and ensure people with a learning disability receive the same quality of care as the rest of the population, Mencap is calling for a number of commitments. These include annual health checks to become a permanent part of the GP contract, all health professionals to act within the law and get training around the Equality Act and Mental Capacity Act, regulatory bodies to conduct rigorous investigations and deliver appropriate sanctions where health professionals have failed in their obligations to patients with a learning disability, and a standard hospital passport for all people with a learning disability.
Health trusts can sign up to Mencap’s Getting it right charter, aimed at stopping indifference and making rights a reality for patients with a learning disability.
Comments
I am a fourth year Occupational Therapy Student, studying at the University of the West of England, Bristol. I have started my final placement today, within the Community Learning Disabilities Team for Central Bristol. I was advised by my supervisor to read 'death by indifference' and further 'death by indifference - 74 years and counting'. I was actually really shocked about the level of care and support recieved by service users who have learning disabilities. I assumed, due to the high levels of social exclusion experienced within learning disabilities but also the focus of service user lead care, that this would not be continuing to happen, maybe being naive. What particulary shocked me was the lack of parents/guardians input, when they know them best, communicate with them more effectively but also more provide a better insight into their individual needs.
Being my first day, reading this has enabled me to acknowledge the recommendations but also as an Occupational Therapist, ensure service user lead care is paramount.
i am havng nightmares at the moment my daughter is in a council run home and the moral of the staff and residents is so low no one knowing when they are going to close the place down weather they will have a job in a few months my daughter us suffering terribly and as a mother it is a constant battle to keep her safe she seems so lonely no one seems to want to take the time to treat her as a human being at the end of the day my daughter is a loving caring child in an adults body she deserves to be happy and safe cared for and loved by the people arround her instead she is lonely confused and afraid of what is happening around her cruelty when physical can be seen but mental abuse is not so easy to see i will fight and fight for my child to be able to live her home peacefully in the knowledge that she will be cared for by the people who she can trust howver this is impossible hen councils are closing places down with no thought of the cinsequenses and the heartache they are causing when will they start to realise these are human beings with feelings and althiugh they claim Whos Life is it certainly not the people like my daughter
perhaps we and Mencap could make a film about it? Already taken part in video nation(bbc) a couple of years ago. Yes we need to talk about how people with learning disabilities are treated by the medical profession so we don,t travel into the same mistakes of the past. Also so we have clear guidelines so vulnerable people are not put at risk, I value our NHS greatly as the alternative is people going without healthcare and dying as a result but why the silence and "don,t talk about it" mentality over this issue?
you are wrong. It is not "death by indifference". It is euthanasia. Deliberate murder of who Hitler described as "useless eaters". Did you not see my play "The First to Go", about the Disabled Holocaust in Nazi Germany?
Extract 1 from the 2008 stage production of "The First To Go"
http://www.youtube.com/watch?v=J8IyDrAcfMk
Nazi Germany.
A Sanatorium for the Disabled
Heide, Helmut and Siegfried are inmates who while away the hours, taking it turns to tell the horrifying story of the Bad Man and his band of Demon Doctors who want to kill all disabled people.
Extract 2 from the 2008 stage production of "The First To Go"
http://www.youtube.com/watch?v=1bCviSAaIE4
A cocktail party where Nazi Doctors and Goebbels discuss methods of killing disabled people. Meanwhile the three story-tellers, Heide, Helmut and Siegfried debate issues of perfection.
Extract 3 from the 2008 stage production of "The First To Go"
http://www.youtube.com/watch?v=4ezwZmf5I_0
Siegfried is an inmate with brittle bones, a congenital disability.
Brunhilde, an auxiliary nurse volunteer. She lost her hand in a fire when
as an army nurse, the military hospital where she worked was bombed by British warplanes.
They have just learned that he, his two friends, Heide and Helmut, and other fellow patients are to be taken to the Hadamar Killing Centre nearby.
So long as we keep believing it could never happen here in Britain, we will never learn from history. It took me 12 years to get my play produced. And when it finally appeared in 2008, it was only permitted 8 performances, and no theatre in London would take it, for fear that such a subject matter wouldn't attract audiences. I am also trying to get a feature film produced based on my play, but it is proving to be impossible, because the material is said to be "too hardcore" or disturbing. Well, of course, it is distrurbing...it should be...using the medical profession for deliberate State murder of disabled people is disturbing.
I have a further update regarding this report and the do not resusciate orders. I went to a learning Disability Partnership Board meeting at Newquay (cornwall) today and l brought this matter up. they were aware of the report but was a bit stunned and taken off guard when l said about. (the representative from the health service was phoned and told just before he came into the room that someone had mentioned it) Was told that it will be discussed properly at the next board meeting when a another health service profession will speak about the local hospital (which for those in the west and mild cornwall is Treliske) . l hope this helps
Thank you Mencap for bringing this to the public's attention. Here at Autism Eye magazine we hear of such discrimination happening to children and adults with autism, not just in hospitals, but in their doctor's surgery. Thank you for campaigning on behalf of all vulnerable people.
Autism Eye
http://www.autismeye.com/
would like to thank the brave families who have spoken out. Have asked bbc radio cornwall to look at the report. the big question is where will this eventually lead to and one day could a "Do not Resucitate" order be placed on people who are able but still has significant learning disabilities ?(like myself) Again many thanks to Mencap for opening up bad and immoral decisions within health and social care. Society needs to talk about this and not shy away from it.
Hi
I work in the Campaign Team at Mencap and helped write 'Death by indifference: 74 deaths and counting.'
After looking at the comments I am very concerned at what has been written. If you know anyone who has been treated badly or if you have a complaint against a hospital please call the Mencap Helpline on 0808 808 1111 and they will support you.
If you would like to tell us about your experiences, fill in a 'your story' form and we will contact you. You can find the form here http://www.mencap.org.uk/yourstory
Thank you very mcuh for all your support!
Sophie
THANK YOU MENCAP FOR PUBLISHING THIS DISCUSTING PRACTICE DNR FORM AT NHS HOSPITALS OUR RECENT EXPERIENCE WITH OUR SON DOWNES/EPELECTIC PERSON AT ONE OF OUR LOCAL HOSPITALS WHERE HE MADE SEVERAL VISITS OVER SEVERAL MONTHS TO FIND ON HIS DISCHARGE BACK TO CARE HOME A DNR WAS FOUND AT BOTTOM OF HIS BAG OF BELONGINGS HE NEEDED TO BE RE-ADMITED 3 DAYS LATER AND WAS TAKEN TO ANOTHER HOSP[TAL WHERE WE WERE PUT IN TOUCH WITH PALS BY HIS CARE NURSE MANAGER AND HOSPITAL AS THE HOSPITAL WAS APPALD AT HIS PREVIOUSE TREATMENT OUR CARE TEAM HAVE BEEN FANTASTIC IN SUPPORTING MY WIFE &I DURING THIS VERY STRESSFULL TIME WE HAVE STARTED ACTION TO PURSUE THIS MATTER FURTHER IN THE HOPE SOMETHING WILL BE DONE TO STOP THIS DISCRIMINACION AGAINST PEOPLE WITH THESE CONDITIONS FURTHER INFORMATION CAN BE GIVEN ABOUT PROBLEMS HE HAD DURING HIS TIME AT FIRST HOSPITAL.IF MENCAP WISH TO SEE IT
Thank you Mencap. Its about time something was done about this disgracful behaviour. My brother was admitted to hospital last August to have a peg fitted and unknown to our family the doctor took it upon herself to sign a DNR without discussing the matter with our family.
This was only discovered when he was discharhed back to his care home where a carer found the DNR in his belongings.
Further to this the doctor in question was later asked by my brothers casae manager why she made this decission having stated on the DNR the main reason not to resussitate him was due to being Downs syndrome and learning disabilities. She then stated that she would not be prepared to jump up and down on some one with Downs!
my brother was then shortly admitted to hospital again with chest problems and the doctor refused to remove the DNR!
My brother is now doing well again in his new care home with people who actually care and give him the right to live.
We are now taking the hospital in question to court as no appology has been given by the doctor.
The findings are shocking when you consider that places such as Cornwall have both learning disability liason nurses in hospitals and out in the community(its been well over a year and a half since l seen one out in the community)