January 2016 – NHS Trust “apologises unreserrvedly” and puts new protocols in place after the issuing of Non Resuscitation Orders to patients with Down’s Syndrome. Also see “Fatwa issued by ISIS” on people with Down’s; a mother’s moving response; Archbishop Charles Chaput on Down’s Syndrome; Minsterial replies on December 22nd


 

January 12th 2016 – Response from the East Kent Hospitals NHS Trust about the issuing of Do Not Resuscitate Orders to patients with Down’s Syndrome – and offers “an unreserved apology” and puts better protocols in place :

East kent1

East Kent2

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London Evening Standard reports on a fatwa issued against babies with Down’s Syndrome:

http://www.standard.co.uk/news/world/isis-issues-fatwa-ordering-suffocation-of-babies-with-down-s-syndrome-a3136651.html

See the full report below: 

So far, there have been 38 confirmed cases of babies who suffered from deformities being summarily executed. The preferred methods used by ISIS executioners are either lethal injection or suffocation. The victims range from one week to three months old.

Down’s woman speaks against search and destroy tests:

http://www.youtube.com/watch?v=HwxjoBQdn0s&sns=em

————————————————————-

And a mother’s response…

I think two important things stand out which have not been said.

People with Down’s syndrome are no longer passive individuals for whom things are done  or decided. They have their own dreams and opinions. Since Valuing People in 2002 they have been encouraged to make their own decisions. They volunteer and some work. Social perceptions have been left behind here.

 

People with Down’s syndrome read the papers and appear on TV in chat shows (Victoria Derbyshire). They have opinions. They may never be merchant bankers or doctors, but where they have been given chances, they do now contribute to society.  They understand this terrible debate about abortion and eugenics.

They are fully human and sometimes reveal more of God’s love than the rest of us.

It is horrific that these sensitive people know that it is people like themselves who are being killed off because they are not wanted by others. What impact is that having on them? The news is everywhere, it is impossible to shield them.

 

Finally, People with Down’s syndrome are less likely to be a trouble to society through drugs, crime or drink.

Down's Syndrome 3

Down’s Syndrome – a death sentence for the baby .

Down's Syndrome

90%of all babies with Down’s Sydrome are victims of eugenic abortions

Andrew Waters   Andrew Waters

 

Parliamentary Question on the issuing of Non Resuscitation Orders to patients with Down’s Syndrome, see:

http://goo.gl/KrSLpa

Down’s Syndrome: Do Not Resuscitate Orders

Question December 15th 2015

3 pm

Asked by

Lord Alton of Liverpool

To ask Her Majesty’s Government what assessment they have made of East Kent Hospitals University NHS Trust’s decision to list Down’s syndrome as a reason to issue a Do Not Resuscitate order to a patient.

The Parliamentary Under-Secretary of State, Department of Health (Lord Prior of Brampton) (Con):

The department expects trusts to have local policies on resuscitation, based on expert professional guidance. Such guidance has been published jointly by the British Medical Association, the Resuscitation Council and the Royal College of Nursing. All resuscitation decisions must be tailored to the individual circumstances of the patient. For patients who lack capacity, the Mental Capacity Act requires a decision in their best interests, taking account of their known wishes, beliefs and values.

Lord Alton of Liverpool (CB):

My Lords, in considering Mencap’s estimate that 1,200 people with learning difficulties die needlessly in NHS care every year, will the Minister look at the inspiring work of the Blue Apple Theatre company, which includes actors with Down’s syndrome performing either “Hamlet” or their play “Living Without Fear”, which was staged in Mr Speaker’s House, and then consider how best we can counter a slide into eugenics, discrimination and non-resuscitation orders, as in the case of Andrew Waters, and look for ways to promote positive and life-affirming attitudes towards people with Down’s syndrome?

Lord Prior of Brampton:

My Lords, perhaps I could address first the particular issue of Andrew Waters. The doctor who signed the DNR order was a junior doctor who made a mistake. It was a misjudgement, he apologised for that mistake, and he has learnt from it by using his experience to teach other doctors how to deal with similar issues. It is important to make that statement first—the reaction of that junior doctor was the right one, having made that mistake. The noble Lord mentioned the Blue Apple Theatre company. He was kind enough to send me a copy of some of the work that it does, which illustrates that people with Down’s syndrome can have a very full, useful, good and happy life, and their lives should be valued just as highly as the life of any other person.

Baroness Walmsley (LD):

My Lords, does the Minister know how widespread such discrimination is against people with learning difficulties? What reassurance can he give to parents such as those I met recently in the House of Commons Dining Room, who were terrified to allow their disabled son to go into hospital because they knew they were going to be put under pressure to sign a DNR notice? They were also afraid that, even if they refused but were not at his bedside 24 hours a day, it would happen anyway.

Lord Prior of Brampton:

My Lords, the noble Baroness has just made a truly shocking statement. If indeed this practice was systemic and widespread, it would be a matter of huge concern and I think all of us in this House would be appalled by it. I have no evidence that this is a systemic problem, but it is absolutely the case that this group of very vulnerable people have been let down not just by doctors and clinicians but actually by all of us—the whole of society, for ever. The report produced three weeks ago called Building the Right Support recognised that we have let down this group for decades, and I hope that over the next five years we can start to make amends.

Baroness McIntosh of Hudnall (Lab):

My Lords, in his original Answer the Minister referred to the Mental Capacity Act, which is widely admired as legislation that is on the whole benign. However, he will be aware that a Select Committee of your Lordships’ House met last year and produced a report that pointed out that the implementation of the Act is not always as effective as it should be, which has a lot to do with the way health professionals understand their duty under the Act in situations such as this. What progress is being made in improving the training of health professionals under the Act?

Lord Prior of Brampton:

My Lords, the noble Baroness will be aware that the noble Baroness, Lady Finlay, has become chairman of the National Mental Capacity Forum, which was established in September. She will be looking at all these issues and reporting back in March next year. I entirely agree with the noble Baroness, Lady McIntosh, that the principles in the Act are generally accepted as being the right ones, but their application has not been as consistent as we would like.

The Lord Bishop of Peterborough:

My Lords, from these Benches we affirm that those with Down’s syndrome and other learning disabilities and handicaps are fully human and fully made in the image of God. We believe that the chief mark of a civilised society is the way it cares for the most vulnerable. Can the Government, through the Minister, indicate what they can do to change the culture, training and attitudes within the NHS—and perhaps within society more widely—to make sure that mistakes such as the one made by this junior doctor are not made again?

Lord Prior of Brampton:

My Lords, the right reverend Prelate makes a number of very important points. This is a society issue as much as a medical issue. Before coming into the Chamber today I discussed with the noble Baroness, Lady Hollins, the importance of teaching students at medical school how to value people with learning difficulties, and the important role that people with learning disabilities might play by going to medical schools and directly telling medical students about their lives and concerns.

Baroness Hollins (CB):

The assumption that pregnant women who are expecting a baby with Down’s syndrome will abort that child affects public and medical attitudes. As one woman with Down’s syndrome put it when speaking at a conference on prenatal diagnosis, “You want to kill us”, which is a hard perspective for an adult with Down’s syndrome to hear. I am grateful to the Minister for picking up the point that medical nursing students need to learn from people with learning disabilities, so that their attitudes change. That familiarity with and being comfortable with people with learning disabilities will change things. Will the noble Lord commit to asking the General Medical Council, the Nursing and Midwifery Council and the Medical Schools Council to make this a priority and to teach not just knowledge and skills but practical attitudes to people with learning disabilities?

Lord Prior of Brampton:

My Lords, the noble Baroness makes a profound point—that medical education and training is not just about passing exams and the technicalities of medicine but about attitudes and how you work and deal with people, particularly people such as those who suffer from learning difficulties. I will certainly do what I can to encourage medical schools and nursing schools to adopt the noble Baroness’s suggestion.

Blue Apple Hamlet

Blue Apple’s Hamlet

 

 

This is the BBC report of Andrew Waters case:

 Andrew Waters

A hospital trust has apologised for placing a “do not resuscitate” (DNR) order on a patient with Down’s Syndrome – and listing his learning difficulties among the reasons for doing so.

The family of Andrew Waters was not consulted or informed and found out only after he was discharged from hospital in Margate, Kent, in 2011.

East Kent Hospitals NHS Trust has admitted breaching his human rights.

Mr Waters died in May, aged 53, but the order did not have a bearing.

His family has never sought compensation over his death.

However, BBC News can report the case surrounding the DNR order after getting a court order protecting Mr Waters’ anonymity lifted, with the consent of his family.

Mr Waters loved dancing, swimming and drama groups.

His family were horrified when, during a hospital stay related to his dementia, staff decided he should not be resuscitated if he developed heart or breathing problems.

The order listed Down’s Syndrome and his learning difficulties among the reasons.

‘Disgraceful’

Andrew’s brother, Michael Waters, said: “For someone to make that decision, without consulting a member of the family or any one of his carers, was just totally unacceptable.

“No-one has the right to make such a decision in such a disgraceful way… to put those reasons down.

“We were there at hospital and involved in his care at every point.

“The form was a folded-up piece of paper found in his bag after discharge, by his carers.

“There was nothing wrong with Andrew’s health at the time which would have had an effect on resuscitation.”

The Waters family have welcomed the trust’s admission that it breached his human rights.

Michael Waters added: “It’s taken a long time for the hospital to admit this, which we’ve found hard.

“All we ever wanted from this case was a simple apology.

“People with Down’s Syndrome deserve the right to live like you and me.”

‘Unreserved apology’

In a statement, East Kent Hospitals University NHS Foundation Trust said: “The trust accepts that it breached its duty owed to the patient.

“We apologise unreservedly for this and the distress caused.

“Actions have been taken to ensure this does not happen again and the trust has now reached a resolution with the family.”

The lawyer who brought the case says trust breaks down between doctors and families if the reasons behind resuscitation orders are not communicated effectively.

Merry Varney, a solicitor with Leigh Day, also fought the case of Janet Tracey, which established last year that doctors had a legal duty to consult and inform patients about DNR orders.

She said: “Sometimes they can be really aimed at trying to give a patient a dignified death.

“This is not about giving up on someone or writing them off.

TV dramas

“But that’s generally what I hear people say they feel, if they find out about these after the decision has been made.

“I still receive around three calls a fortnight from families or patients who are concerned about what a DNR means and whether it means not to treat more generally.

“Unfortunately, the portrayal of cardio-pulmonary resuscitation in TV dramas sometimes suggests it’s a quick fix and works for everyone.

“That’s simply not the case – and there’s a real onus on healthcare professionals to communicate that.”

‘Scandal’

The learning disability charity Mencap described Andrew Waters’ case as “unacceptable”.

Its head, Jan Tregelles, said: “Many families who have lost their loved ones to poor care within the NHS have told us about the inappropriate use of DNR.

“There have been circumstances where these notices have been applied without the knowledge or agreement of families.

“And the orders have also been applied hastily, in inappropriate situations, solely on the basis of a person’s learning disability.

“This highlights the failures of care that are a daily reality for many people with a learning disability trying to get access to good quality healthcare.

“1,200 people with a learning disability are dying avoidably in the NHS every year.

“The Government must take action to ensure that people with a learning disability get the right healthcare within the NHS and put an end to this scandal of avoidable deaths.”

————————————————————————————————————————————————

 

My supplementary question referred to the Jessop family. William Jessop ’s brother has Down’s and his mother, Jane, set up Blue Apple Theatre Company http://www.blueappletheatre.hampshire.org.uk/ which he writes for and in which his brother acts.  I first met them when they performed a play, Living Without Fear, in Mr.Speaker’s House. https://davidalton.net/2014/08/21/the-killing-of-people-with-downs-syndrome-bbc-report/  They have recently been touring with productions of Hamlet and Much Ado About Nothing  (see http://www.bbc.co.uk/news/blogs-ouch-25979406).

I wrote about the production in Mr.Speaker’s House in this blog: https://davidalton.net/2013/04/30/drama-and-music-to-make-us-think-disability-hate-crime-religious-persecution-bullying-relationships-the-holocaust-north-korea-scapegoating-of-minorities/

And, in 2014 wrote about the link between the pre-birth elimination  of nearly 1000 Downs babies who are now routinely aborted every year, and our post-birth attitudes:

“Not content with killing Down’s Syndrome babies – 90% of whom are now hunted down and aborted before their births – we’re now seeing attempts to eliminate them and to let them die rather than treat them in our NHS Hospitals. Is this the same NHS that we were celebrating in the Olympic Stadium? What a contrast, too, with the inspirational achievements of disabled athletes, during the Paralympics celebrated in the same stadium, and who have taught us so much about courage and the overcoming of seemingly impossible odds.

“As we rush pell-mell into Nietzschean-style eugenics and ethics, we should recall those inspirational moments, remembering that people with  Down’s Syndrome are human beings – not “a drain on public finances”; that disabled people would not be “better off dead” and that by allowing the elimination of the weak it is we who expose ourselves as the truly weak” 

This Down’s woman speaks against search and destroy tests at  http://www.youtube.com/watch?v=HwxjoBQdn0s&sns=em

 

(Lord) Robert Winston has emailed me to say that although he was unable to be present for the Question (he was in India) he wrote to say:

 “you can certainly quote my view which is that many children with Down’s syndrome, with proper nurture can have full and happy lives and that this dictate, on the face of it seems totally unacceptable.”

 

 

Some Key Points:

 

. Mencap research suggesting that 1,200 people with a learning disability die needlessly in NHS care each year.

 Statistics released by the CPS that show a  213% rise in the number of prosecutions for hate crime against the disabled.

 A Leicester doctor being found guilty of  manslaughter of six-year-old Jack Adock who had Down Syndrome and a learning disability.

 Jack Adock

The  murder of Lee Irwin, a 24 year old from Manchester with a learning disability.

 

Latest figures showing 90% of unborn children identified with Down Syndrome are aborted and this is  projected to increase if proposed cfDNA screening is introduced next year, an outcome which is  in conflict with The Convention of the Rights of Persons with Disabilities (CRPD).

 

Downs Syndrome

“Some people think I shouldn’t be here, but I am. I’m a human being, and I’m in love.” – words of an actor in “Living With Fear”

Active discrimination against the few remaining families who choose to keep children with Down Syndrome, is highlighted in this recent article  in The Guardian – ‘…there was not a single positive conversation with doctors or staff at the hospital, no discussion about Down’s syndrome, of how things might work out or how we might prepare.’

  

Public discriminatory comments from celebrities and politicians against people with disabilities including  Ursula Presgrave, UKIP candidate Geoffrey Clark and  Richard Dawkins.

 The following written questions have also been tabled in Parliament.

Q

Asked by Lord Alton of Liverpool

Asked on: 10 December 2015

Department of Health

Lords

HL4441

To ask Her Majesty’s Government what assessment they have made of East Kent Hospitals University NHS Foundation Trust’s decision to list Down’s syndrome as a reason to issue a Do Not Resuscitate order to a patient.

 

Q

Asked by Lord Alton of Liverpool

Asked on: 10 December 2015

Department of Health

Lords

HL4442

To ask Her Majesty’s Government what steps will be taken to improve attitudes of hospital staff in NHS trusts towards patients with Down’s syndrome.

 

Q

Asked by Lord Alton of Liverpool

Asked on: 10 December 2015

Department of Health

Lords

HL4443

To ask Her Majesty’s Government what steps will be taken to ensure that individuals with learning disabilities have access to good quality healthcare, in the light of reports by Mencap that there are 1,200 avoidable deaths of people with a learning disability in the NHS annually.

 

Q

Asked by Lord Alton of Liverpool

Asked on: 10 December 2015

Department of Health

Lords

HL4444

To ask Her Majesty’s Government whether any disciplinary action is being taken against the doctors at the Queen Elizabeth The Queen Mother Hospital in Margate who listed Down’s syndrome and learning difficulties among the reasons for issuing a Do Not Resuscitate order.

 

Q

Asked by Lord Alton of Liverpool

Asked on: 10 December 2015

Department of Health

Lords

HL4445

To ask Her Majesty’s Government what recent discussions they have had with East Kent Hospitals University NHS Foundation Trust regarding the use of Do Not Resuscitate orders for patients with disabilities.

 

Q

Asked by Lord Alton of Liverpool

Asked on: 10 December 2015

Department of Health

Lords

HL4446

To ask Her Majesty’s Government what steps are being taken to ensure that Do Not Resuscitate orders are not assigned in the future to patients solely because they have Down’s syndrome or any other learning disability

————————————————————

And a view from America. Archbishop Charles Chaput O.F.M. Cap:

PHOENIX CATHOLIC PHYSICIANS’ GUILD COMMENTS 10.16.09

I want to talk tonight about the kind of people we’re becoming, and what we can do about it. Especially what you can do about it.  But it’s always good to start with a few facts before offering an opinion.  So that’s what I’ll do.

 

A number of my friends have children with disabilities. Their problems range from cerebral palsy to Turner’s syndrome to Trisomy 18, which is extremely serious.  But I want to focus on one fairly common genetic disability to make my point.  I’m referring to Trisomy 21, or Down syndrome.

 

Those of us here tonight will already know that Down syndrome is not a disease. It’s a genetic disorder with a variety of symptoms. Therapy can ease the burden of those symptoms, but Down syndrome is permanent.  There’s no cure.  People with Down syndrome have mild to moderate developmental delays.  They have low to middling cognitive function. They also tend to have a uniquely Down syndrome “look” – a flat facial profile, almond-shaped eyes, a small nose, short neck, thick stature and a small mouth which often causes the tongue to protrude and interferes with clear speech.  People with Down syndrome also tend to have low muscle tone.  This can affect their posture, breathing and speech.

 

Currently about 5,000 children with Down syndrome are born in the United States each year. They join a national Down syndrome population of roughly 400,000 persons. But that population may soon dwindle.  And the reason why it may decline illustrates, in a vivid way, a struggle within the American soul.  That struggle will shape the character of our society in the decades to come.

 

Prenatal testing can now detect up to 95 percent of pregnancies with a strong risk of Down syndrome. The tests aren’t conclusive.  They can’t give a firm yes or no.  But they’re pretty good.  And the results of those tests are brutally practical.  Studies show that more than 80 percent of unborn babies diagnosed with Down syndrome now get terminated in the womb.  They’re killed because of a flaw in one of their chromosomes – a flaw that’s neither fatal nor contagious, but merely undesirable.

 

The older a woman gets, the higher her risk of bearing a child with Down syndrome. And so, in medical offices around the country, pregnant women now hear from doctors or genetic counselors that their baby has “an increased likelihood” of Down syndrome based on one or more prenatal tests. Some doctors deliver this information with sensitivity and great support for the woman.  But, as my friends know from experience, too many others seem more concerned about avoiding lawsuits, or managing costs, or even, in a few ugly cases, cleaning up the gene pool.

 

We’re witnessing a kind of schizophrenia in our culture’s conscience. In Britain, the Guardian newspaper recently ran an article lamenting the faultiness of some of the prenatal tests that screen for Down syndrome. Women who receive positive results, the article noted, often demand an additional test, amniocentesis, which has a greater risk of miscarriage.  Doctors in the story complained about the high number of false positives for Down syndrome. “The result of [these false positives] is that babies are dying completely unnecessarily,” one med school professor said. “It’s scandalous and disgraceful … and causing the death of normal babies.” Those words sound almost humane – until we realize that, at least for the med school professor, killing “abnormal” babies like those with Down syndrome is perfectly acceptable.

 

In practice, medical professionals can now steer an expectant mother toward abortion simply by hinting at a list of the child’s possible defects.  And the most debased thing about that kind of pressure is that doctors know better than anyone else how vulnerable a woman can be in hearing potentially tragic news about her unborn baby.

 

I’m not suggesting that doctors should hold back vital knowledge from parents. Nor should they paint an implausibly upbeat picture of life with a child who has a disability. Facts and resources are crucial in helping adult persons prepare themselves for difficult challenges. But doctors, genetic counselors, and med school professors should have on staff – or at least on speed dial – experts of a different sort.

 

Parents of children with special needs, special education teachers and therapists, and pediatricians who have treated children with disabilities often have a hugely life-affirming perspective. Unlike prenatal caregivers, these professionals have direct knowledge of persons with special needs. They know their potential. They’ve seen their accomplishments. They can testify to the benefits – often miraculous – of parental love and faith.  Expectant parents deserve to know that a child with Down syndrome can love, laugh, learn, work, feel hope and excitement, make friends, and create joy for others.  These things are beautiful precisely because they transcend what we expect.  They witness to the truth that every child with special needs has a value that matters eternally.

 

Raising a child with Down syndrome can be hard. Parents grow up very fast.  None of my friends who has a daughter or son with a serious disability is melodramatic, or self-conscious, or even especially pious about it.  They speak about their special child with an unsentimental realism.  It’s a realism flowing out of love – real love, the kind that courses its way through fear and suffering to a decision, finally, to surround the child with their heart and trust in the goodness of God.  And that decision to trust, of course, demands not just real love, but also real courage.

 

The real choice in accepting or rejecting a child with special needs is never between some imaginary perfection or imperfection. None of us is perfect.  No child is perfect.  The real choice in accepting or rejecting a child with special needs is between love and unlove; between courage and cowardice; between trust and fear.  That’s the choice we face when it happens in our personal experience.  And that’s the choice we face as a society in deciding which human lives we will treat as valuable, and which we will not.

 

Nearly 50 percent of babies with Down syndrome are born with some sort of heart defect.  Most have a lifelong set of health challenges.  Some of them are serious.  Government help is a mixed bag.  Public policy is uneven. Some cities and states, like New York, provide generous aid to the disabled and their families. In many other jurisdictions, though, a bad economy has forced budget cuts.  Services for the disabled — who often lack the resources, voting power and lobbyists to defend their interests — have shrunk. In still other places, the law mandates good support and care, but lawmakers neglect their funding obligations, and no one holds them accountable.  The vulgar economic fact about the disabled is that, in purely utilitarian terms, they rarely seem worth the investment.

 

That’s the bad news. But there’s also good news.  Ironically, for those persons with Down syndrome who do make it out of the womb, life is better than at any time in our nation’s history. A baby with Down syndrome born in 1944, the year of my own birth, could expect to live about 25 years.  Many spent their entire lives mothballed in public institutions.  Today, people with Down syndrome routinely survive into their 50s and 60s.  Most can enjoy happy, productive lives.  Most live with their families or share group homes with modified supervision and some measure of personal autonomy.  Many hold steady jobs in the workplace.  Some marry.  A few have even attended college.  Federal law mandates a free and appropriate education for children with special needs through the age of 21.  Social Security provides modest monthly support for persons with Down syndrome and other severe disabilities from age 18 throughout their lives.  These are huge blessings.

 

And, just as some people resent the imperfection, the inconvenience and the expense of persons with disabilities, others see in them an invitation to be healed of their own sins and failures by learning how to love.

 

About 200 families in this country are now waiting to adopt children with Down syndrome. Many of these families already have, or know, a child with special needs. They believe in the spirit of these beautiful children, because they’ve seen it firsthand. A Maryland-based organization, Reece’s Rainbow, helps arrange international adoptions of children with Down syndrome.  The late Eunice Shriver spent much of her life working to advance the dignity of children with Down syndrome and other disabilities.  Last September, the Anna and John J. Sie Foundation committed $34 million to the University of Colorado to focus on improving the medical conditions faced by those with Down syndrome. And many businesses, all over the country, now welcome workers with Down syndrome. Parents of these special employees say that having a job, however tedious, and earning a pay check, however small, gives their children pride and purpose.  These things are more precious than gold.

 

I said at the start of my remarks tonight that I wanted to talk about the kind of people we’re becoming, and what we can do about it. And especially what you can do about it, both as medical professionals and as Catholics who take their faith seriously.

 

The Nobel Peace Prize winner Albert Schweitzer once wrote that, “A man is truly ethical only when he obeys the compulsion to help all life which he is able to assist, and shrinks from injuring anything that lives.” Every child with Down syndrome, every adult with special needs; in fact, every unwanted unborn child, every person who is poor, weak, abandoned or homeless – each one of these persons is an icon of God’s face and a vessel of his love. How we treat these persons – whether we revere them and welcome them, or throw them away in distaste – shows what we really believe about human dignity, both as individuals and as a nation.

 

The American Jesuit scholar Father John Courtney Murray once said that “Anyone who really believes in God must set God, and the truth of God, above all other considerations.”

 

Here’s what that means. Catholic public officials who take God seriously cannot support laws that attack human dignity without lying to themselves, misleading others and abusing the faith of their fellow Catholics. God will demand an accounting. Catholic doctors who take God seriously cannot do procedures, prescribe drugs or support health policies that attack the sanctity of unborn children or the elderly; or that undermine the dignity of human sexuality and the family. God will demand an accounting.  And Catholic citizens who take God seriously cannot claim to love their Church, and then ignore her counsel on vital public issues that shape our nation’s life. God will demand an accounting. As individuals, we can claim to be or believe whatever we want.  We can posture, and rationalize our choices, and make alibis with each other all day long — but no excuse for our lack of honesty and zeal will work with the God who made us.  God knows our hearts better than we do.  If we don’t conform our hearts and actions to the faith we claim to believe, we’re only fooling ourselves.

 

We live in a culture where our marketers and entertainment media compulsively mislead us about the sustainability of youth; the indignity of old age; the avoidance of suffering; the denial of death; the meaning of real beauty; the impermanence of every human love; the dysfunctions of children and family; the silliness of virtue; and the cynicism of religious faith. It’s a culture of fantasy, selfishness and illness that we’ve brought upon ourselves.  And we’ve done it by misusing the freedom that other — and greater — generations than our own worked for, bled for and bequeathed to our safe-keeping.

 

What have we done with that freedom? In whose service do we use it now?

 

John Courtney Murray is most often remembered for his work at Vatican II on the issue of religious liberty, and for his great defense of American democracy in his book, We Hold These Truths. Murray believed deeply in the ideas and moral principles of the American experiment.  He saw in the roots of the American Revolution the unique conditions for a mature people to exercise their freedom through intelligent public discourse, mutual cooperation and laws inspired by right moral character.  He argued that — at its best — American democracy is not only compatible with the Catholic faith, but congenial to it.

 

But he had a caveat. It’s the caveat George Washington implied in his Farewell Address, and Charles Carroll – the only Catholic signer of the Declaration of Independence — mentions in his own writings.  In order to work, America depends as a nation on a moral people shaped by their religious faith, and in a particular way, by the Christian faith.  Without that living faith, animating its people and informing its public life, America becomes something alien and hostile to the very ideals it was founded on.

 

This is why the same Father Murray who revered the best ideals of the American experiment could also write that “Our American culture, as it exists, is actually the quintessence of all that is decadent in the culture of the Western Christian world. It would seem to be erected on the triple denial that has corrupted Western culture at its roots: the denial of metaphysical reality, of the primacy of the spiritual over the material, [and] of the social over the individual . . . Its most striking characteristic is its profound materialism . . . It has given citizens everything to live for and nothing to die for.  And its achievement may be summed up thus:  It has gained a continent and lost its own soul.”

 

Each of you here tonight who serves in the medical profession has a sacred vocation. That vocation of healing comes from Jesus Christ himself.  I don’t mean just curing people’s aches and pains, although physical healing is so very important.  I mean the kind of healing that comes when a suffering person is understood and loved, and knows that she’s understood and loved.  That requires a different kind of medicine.  The medicine of patience.  The medicine of listening.  The medicine of respect.

 

Over the years, I’ve learned that when God takes something away from a person, he gives back some other gift that’s equally precious. Rick Santorum, the former senator from Pennsylvania, is a friend of mine.  Rick has always been Catholic, and always prolife.  But it’s one thing to argue in Congress for the sanctity of life.  It’s another to prove it by your actions under pressure.  Last year Rick’s wife gave birth to a beautiful daughter named Bella.  Bella has Trisomy 18.  Against the odds, that little girl is still alive and still growing.  And she’s surrounded by a family devoted to loving her, 24 hours a day.

 

Rick and his wife have no illusions about the prospects for their daughter. No one “recovers” from Trisomy 18.  But he said to me once that each day he has with Bella makes him a little bit more of a “whole person.”   It’s one of God’s ironies that the suffering imperfection brings, can perfect us in the vocation of love.  Rick’s daughter is an education in the dignity of every human life; a tutor in the meaning of love – and not just for themselves, but for me as their friend, and for dozens of other people who encounter the Santorum family every week.  Another friend of mine has a son with Down syndrome, and she calls him a “sniffer of souls.”  He may have an IQ of 47, and he’ll never read The Brothers Karamazov, but he has a piercingly quick sense of the heart of the people he meets.  He knows when he’s loved — and he knows when he’s not.  Ultimately, we’re all like her son.  We hunger for people to confirm that we have meaning by showing us love.  We need that love.  And we suffer when that love is withheld.

 

The task you need to take home with you tonight is this. Be the best doctors, nurses and medical professionals you can be.  Your skill gives glory to God.  But be the best Catholics you can be first.  Pour your love for Jesus Christ into the healing you do for every person you serve.  By your words and by your actions, be a witness to your colleagues.  Speak up for what you believe.  Love the Church.  Defend her teaching.  Trust in God.  Believe in the Gospel. And don’t be afraid. Fear is beneath your dignity as sons and daughters of the God of life.

 

Changing the course of American culture seems like such a huge task; so far beyond the reach of this little gathering tonight. But St. Paul felt exactly the same way.  Redeeming and converting a civilization has already been done once.  It can be done again. But we need to understand that God is calling you and me to do it.  He chose us.  He calls us. He’s waiting, and now we need to answer him.  Thanks, and God bless you.

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December 22nd Parliamentary replies

Asked on: 10 December 2015
Department of Health
Down’s Syndrome
To ask Her Majesty’s Government what steps will be taken to improve attitudes of hospital staff in NHS trusts towards patients with Down’s syndrome.

A

Answered on: 22 December 2015

The Government’s response to the recommendations in the report of the Mid Staffordshire NHS Foundation Trust Public Inquiry included a wide range of measures aimed at improving safety and quality as well as ensuring compassionate care for everyone who uses National Health Service services, including people with disabilities.
NHS organisations should comply with existing legislation, frameworks and guidance aimed at ensuring they identify and meet the needs of people with learning disabilities in commissioning and delivering safe, high quality care to all individuals, groups and communities of their populations.
From June 2016, the Department will publish independently assured, ratings of the quality of healthcare offered to people with learning disabilities in all clinical commissioning group areas, to highlight variations and to allow rapid action to be taken when improvement is needed.
NHS England continues to work to improve access to good quality healthcare for people with learning disabilities, including:
‒ improving identification of people with learning disabilities in health care records to ensure that reasonable adjustments can be made, communication needs addressed and crisis plans developed;
‒ encouraging the use of health passports when people access services so that professionals and staff are aware of their needs;
‒ improving identification on cancer screening information systems;
‒ ensuring that people with learning disabilities are identified as a priority group to receive flu vaccinations;
‒ improving access to NHS 111, Accident and Emergency and other services; and
‒ increasing the number of people who are eligible getting an annual learning disability health check from their general practitioner.
NHS England has also commissioned a learning disabilities Premature Mortality Review programme led by the University of Bristol from June 2015 to review and learn from deaths of people with a learning disability with the aim of improving services, care and support nationally.
These initiatives will help to raise awareness and to tackle the inequalities experienced by those with learning disability, including where associated with Down’s syndrome.

In addition, the Care Certificate, which was introduced in April 2015, is helping NHS service providers to ensure that their new healthcare assistants have the right fundamental skills and knowledge, including in communication and awareness of learning disability.

Health Education England will work with healthcare providers to ensure that the continuing personal and professional development of staff continues beyond the end of formal training to enable staff to deliver safe and high quality healthcare and public health services both now and in the future.

 

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Asked on: 10 December 2015
Department of Health
Health Services: Learning Disability
To ask Her Majesty’s Government what steps will be taken to ensure that individuals with learning disabilities have access to good quality healthcare, in the light of reports by Mencap that there are 1,200 avoidable deaths of people with a learning disability in the NHS annually.

A

Answered on: 22 December 2015

The Government’s response to the recommendations in the report of the Mid Staffordshire NHS Foundation Trust Public Inquiry included a wide range of measures aimed at improving safety and quality as well as ensuring compassionate care for everyone who uses National Health Service services, including people with disabilities.
NHS organisations should comply with existing legislation, frameworks and guidance aimed at ensuring they identify and meet the needs of people with learning disabilities in commissioning and delivering safe, high quality care to all individuals, groups and communities of their populations.
From June 2016, the Department will publish independently assured, ratings of the quality of healthcare offered to people with learning disabilities in all clinical commissioning group areas, to highlight variations and to allow rapid action to be taken when improvement is needed.
NHS England continues to work to improve access to good quality healthcare for people with learning disabilities, including:
‒ improving identification of people with learning disabilities in health care records to ensure that reasonable adjustments can be made, communication needs addressed and crisis plans developed;
‒ encouraging the use of health passports when people access services so that professionals and staff are aware of their needs;
‒ improving identification on cancer screening information systems;
‒ ensuring that people with learning disabilities are identified as a priority group to receive flu vaccinations;
‒ improving access to NHS 111, Accident and Emergency and other services; and
‒ increasing the number of people who are eligible getting an annual learning disability health check from their general practitioner.
NHS England has also commissioned a learning disabilities Premature Mortality Review programme led by the University of Bristol from June 2015 to review and learn from deaths of people with a learning disability with the aim of improving services, care and support nationally.
These initiatives will help to raise awareness and to tackle the inequalities experienced by those with learning disability, including where associated with Down’s syndrome.

In addition, the Care Certificate, which was introduced in April 2015, is helping NHS service providers to ensure that their new healthcare assistants have the right fundamental skills and knowledge, including in communication and awareness of learning disability.

Health Education England will work with healthcare providers to ensure that the continuing personal and professional development of staff continues beyond the end of formal training to enable staff to deliver safe and high quality healthcare and public health services both now and in the future.

Grouped Questions: HL4442

 

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Asked on: 10 December 2015
Department of Health
Health Services: Learning Disability
To ask Her Majesty’s Government what steps are being taken to ensure that Do Not Resuscitate orders are not assigned in the future to patients solely because they have Down’s syndrome or any other learning disability.

A

Answered on: 22 December 2015

The Department expects National Health Service trusts and foundation trusts to have in place local policies on resuscitation that are based on expert professional guidance. We have commended, as a basis for local policies, professional guidance, Decisions relating to cardiopulmonary resuscitation (2014), published jointly by the British Medical Association, the Resuscitation Council (UK) and the Royal College of Nursing. The guidance is clear that any resuscitation decision must be free from any discrimination, tailored to the individual circumstances of the patient and fully documented. The use of a Do Not Attempt Cardiopulmonary Resuscitation decision solely on the basis that a patient has Down’s Syndrome is totally unacceptable.
A copy of the guidance is attached.

 

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Asked on: 10 December 2015
Department of Health
East Kent Hospitals University NHS Foundation Trust
To ask Her Majesty’s Government what assessment they have made of East Kent Hospitals University NHS Foundation Trust’s decision to list Down’s syndrome as a reason to issue a Do Not Resuscitate order to a patient.

A

Answered on: 21 December 2015

The Department expects National Health Service trusts and NHS foundation trusts to have in place local policies on resuscitation that are based on expert professional guidance. We have commended, as a basis for local policies, professional guidance, Decisions Relating to Cardiopulmonary Resuscitation (2014), published jointly by the British Medical Association, the Resuscitation Council (UK) and the Royal College of Nursing. The guidance is clear that any resuscitation decision must be tailored to the individual circumstances of the patient and must not be made on the basis of blanket assumptions. A copy of the guidance is attached.

Where a person lacks capacity to make decisions about their care or treatment, the Mental Capacity Act makes clear that doctors must act in the best interests of patients. Doctors must take account as far as possible of the known wishes of the person and consult with relatives and colleagues as appropriate to help inform their decision.

Departmental officials have recently contacted the Trust about recent media coverage concerning an incident when Down’s syndrome was listed as a reason to issue a Do Not Resuscitate order. The Trust confirms it accepts that it failed to consult with the family and has apologised unreservedly for this isolated incident by a junior doctor.
In regards to any disciplinary action taken against the doctor this would be an operational issue for the Foundation Trust. We have written to Ms Nikki Cole, Chair of East Kent Hospitals University NHS Foundation Trust informing her of the Noble Lord’s enquiry. She will reply shortly and a copy of the letter will be placed in the Library.

Decisions Relating to CPR (PDF Document, 601.78 KB)
Grouped Questions: HL4444 | HL4445

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Asked on: 10 December 2015
Department of Health
Queen Elizabeth the Queen Mother Hospital Margate
To ask Her Majesty’s Government whether any disciplinary action is being taken against the doctors at the Queen Elizabeth The Queen Mother Hospital in Margate who listed Down’s syndrome and learning difficulties among the reasons for issuing a Do Not Resuscitate order.

A

Answered on: 21 December 2015

The Department expects National Health Service trusts and NHS foundation trusts to have in place local policies on resuscitation that are based on expert professional guidance. We have commended, as a basis for local policies, professional guidance, Decisions Relating to Cardiopulmonary Resuscitation (2014), published jointly by the British Medical Association, the Resuscitation Council (UK) and the Royal College of Nursing. The guidance is clear that any resuscitation decision must be tailored to the individual circumstances of the patient and must not be made on the basis of blanket assumptions. A copy of the guidance is attached.

Where a person lacks capacity to make decisions about their care or treatment, the Mental Capacity Act makes clear that doctors must act in the best interests of patients. Doctors must take account as far as possible of the known wishes of the person and consult with relatives and colleagues as appropriate to help inform their decision.

Departmental officials have recently contacted the Trust about recent media coverage concerning an incident when Down’s syndrome was listed as a reason to issue a Do Not Resuscitate order. The Trust confirms it accepts that it failed to consult with the family and has apologised unreservedly for this isolated incident by a junior doctor.
In regards to any disciplinary action taken against the doctor this would be an operational issue for the Foundation Trust. We have written to Ms Nikki Cole, Chair of East Kent Hospitals University NHS Foundation Trust informing her of the Noble Lord’s enquiry. She will reply shortly and a copy of the letter will be placed in the Library.

Decisions Relating to CPR (PDF Document, 601.78 KB)
Grouped Questions: HL4441 | HL4445
————————————————————-
Asked on: 10 December 2015
Department of Health
East Kent Hospitals University NHS Foundation Trust
To ask Her Majesty’s Government what recent discussions they have had with East Kent Hospitals University NHS Foundation Trust regarding the use of Do Not Resuscitate orders for patients with disabilities.

A

Answered on: 21 December 2015

The Department expects National Health Service trusts and NHS foundation trusts to have in place local policies on resuscitation that are based on expert professional guidance. We have commended, as a basis for local policies, professional guidance, Decisions Relating to Cardiopulmonary Resuscitation (2014), published jointly by the British Medical Association, the Resuscitation Council (UK) and the Royal College of Nursing. The guidance is clear that any resuscitation decision must be tailored to the individual circumstances of the patient and must not be made on the basis of blanket assumptions. A copy of the guidance is attached.

Where a person lacks capacity to make decisions about their care or treatment, the Mental Capacity Act makes clear that doctors must act in the best interests of patients. Doctors must take account as far as possible of the known wishes of the person and consult with relatives and colleagues as appropriate to help inform their decision.

Departmental officials have recently contacted the Trust about recent media coverage concerning an incident when Down’s syndrome was listed as a reason to issue a Do Not Resuscitate order. The Trust confirms it accepts that it failed to consult with the family and has apologised unreservedly for this isolated incident by a junior doctor.
In regards to any disciplinary action taken against the doctor this would be an operational issue for the Foundation Trust. We have written to Ms Nikki Cole, Chair of East Kent Hospitals University NHS Foundation Trust informing her of the Noble Lord’s enquiry. She will reply shortly and a copy of the letter will be placed in the Library.

Decisions Relating to CPR (PDF Document, 601.78 KB)
Grouped Questions: HL4441 | HL4444
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Most depraved act: Sick ISIS fighters want to kill ALL children with Down’s Syndrome

SAVAGE ISIS extremists have issued an “oral fatwa” – a ruling in accordance with Islamic law – authorising the extermination of children with Down’s Syndrome.

PUBLISHED: 00:00, Tue, Dec 15, 2015 | UPDATED: 09:13, Tue, Dec 15, 2015

Disabled child in IraqMOSUL EYE

ISIS militants have issued an order to “exterminate” all children who suffer from disabilities

The macabre orders have come from ISIS’ Sharia Board, which has instructed its members to “kill new-born babies with Down’s Syndrome and congenital deformities and disabled children.”

Most of the children suffering from physical disabilities are those from foreign fighters who married Iraqi, Syrian, and Asian women, according to activist group Mosul Eye.

So far, there have been 38 confirmed cases of babies who suffered from deformities being summarily executed. The preferred methods used by ISIS executioners are either lethal injection or suffocation. The victims range from one week to three months old.

The extremist group has claimed responsibility for last month’s terror attacks in Paris which killed 130 people.

After the massacre in the French capital, Western powers vowed to unite in the fight against the terror group.

Child in MosulMOSUL EYE

Since taken over Mosul, ISIS has been accused of committing a number of atrocities against civilians

Children in MosulMOSUL EYE

So far, some 38 children who suffered from disabilities have reportedly been executed by ISIS

Britain, France, US, Russia and a number of Middle Eastern countries are have all committed to military operations in Syrian territory in an effort to defeat ISIS.

ISIS took control of Mosul, Iraq’s second largest city, in June 2014.

According to experts, that was when the extremist group acquired much of the arsenal it possesses today, which includes military weapons and vehicles, some of them made in Britain and given to the Iraqi government at the time.

In a damning report published last week, Amnesty International said “reckless arms trading” has been one of the big reasons why ISIS extremists have been able to thrive in Iraq and Syria, and consistently commit an array of atrocities throughout the Middle East