Category Archives: Patient representatives

At last – common sense on the right to die with agreement of Dr and Family. The cost implications of prevention of genetic diseases are a barrier too high for most countries..

The decision on assisted dying is to be welcomed, as is the news that diseases such as this could be edited out of society eventually using Crispr, but there is a cost, and patenting of the processes may mean costs are too high for many nations/systems. The news in the recent edition of the New Scientist is that a leukaemia gene can be edited for the price of $475,000 per patient. This blows NICE life – years valuation out of the water… But on the other hand, rich families will be able to afford the treatments… At last – common sense on the right to die with agreement of Dr and Family. But the cost implications of prevention, along with the ethical dilemmas and the religious rights objections, mean that helping the patient by “putting them at the centre of your concern”, will still be the main problem for doctors for decades to come. Even the insurers might object.

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The Telegraph 20th September: Euthanasia laws to give terminally ill patients right to die

The Telegraph 21st September 2017: Right-to-die cases do not need to go to court, judge rules 

A judge has made a landmark ruling that legal permission will no longer be required by a court before life-supporting treatment is withdrawn from patients suffering from severely debilitating illnesses, lawyers say.
Mr Justice Peter Jackson ruled that a 50-year-old woman who had suffered from Huntington’s disease for more than 20 years should be allowed to die after a hearing in the Court of Protection, where judges analyse issues relating to people who lack the mental capacity to make decisions for themselves, in London.
The woman’s daughter plus doctors caring for her all agreed that life support treatment should end……

The Times&Star: Judge’s decision in life-support treatment case was ‘landmark’ ruling 

I have a 50% chance of developing Huntington’s Disease. (Self.com)

Nicholas Hune-Brown 7th April 2017: Assisted suicide in Canada: what doctors think

Francis Gibb 21st March2017: Let me choose my death, terminally ill lecturer tells judge

Rosemary Bennett Jan 7th: Lecturer with months to live seeks right to assisted death

Daniel Finkelstein July 7th: We should all be free to choose how we die

June 19th 2016: Doctors ponder ending ban on assisted dying –

The case against: The Times letters July 2014: Assisted dying debate must be thorough – there are many details in the proposed assisted-dying legislation which need careful scrutiny

Sir, The crux of the debate on assisted suicide is whether it is possible to grant some people the right to assistance in suicide without exposing others to subtle, malicious pressure to exercise it.
In 2011 Lord Falconer’s commission stipulated that a safe assisted-suicide framework required, first, safeguards “to ensure that the choice of an assisted death could never become an obligation and that a person could not experience pressure from another person to choose an assisted death without the abuse being detected”. Second, there had to be provision of “the best end of life care available”, including staff who would fully investigate the circumstances and motivations of any person seeking an assisted death and alternative options for treatment and care”.
In her book about the treatment of the elderly, Not Dead Yet (2008), Baroness Neuberger reported that in the UK 500,000 elderly people were being abused, two-thirds by relatives or friends. The Stafford Hospital scandal revealed that abuse of vulnerable patients is not limited to amateurs but extends to healthcare professionals.
So, we have no reason to suppose that we can “ensure” the absence of undue pressure to opt for assisted suicide and the presence of compassionate staff. Indeed, there is good empirical reason to doubt that such things can ever be guaranteed.
Judging by his own commission’s criteria, then, Lord Falconer’s Assisted Dying bill is, while well meaning, dangerously imprudent.

The Case for: Why the Assisted Dying Bill should become law in England and Wales

About time too – Doctors ponder ending ban on assisted dying

The Times 21st September 2017: Judge changes rule on ending life support for terminally-ill

judge in a specialist court has made a landmark decision that will affect the relatives of terminally-ill people, lawyers say.
Mr Justice Peter Jackson ruled that a 50-year-old woman who had suffered from Huntington’s disease for 20 years should be allowed to die after a hearing in the Court of Protection, where judges analyse issues relating to people who lack the mental capacity to make decisions for themselves, in London.
The woman’s daughter and her doctors all agreed that life support treatment should end.
Mr Justice Jackson said that judges should not be required to make rulings in similar cases, where relatives and doctors were in agreement and medical guidelines had been followed.
Mr Justice Jackson said he could understand why the woman’s mother and doctors had asked for a ruling. But, he said, in a written ruling : “In my view it was not necessary as a matter of law for this case to have been brought to court.”

He published the ruling on Wednesday and said the woman had now died.
Specialist lawyers at Irwin Mitchell had represented the woman’s mother. They described Mr Justice Jackson’s decision as a landmark.

Oliver Moody reports in The Times: Pioneering scientists edit genes in embryos to stop inherited diseases

Genetic engineers have eradicated disease-carrying DNA from human embryos in a breakthrough that heralds a new era in medicine.

The achievement could lay the groundwork for doctors to eliminate hundreds of inherited illnesses such as Huntington’s disease, cystic fibrosis and sickle-cell anaemia with a single, permanent change to a family’s bloodline.

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While implanting altered embryos in the womb is against the law in the UK and many other countries, some scientists forecast that the technology will become acceptable if the benefits of preventing these conditions outweigh their practical and ethical problems.

There are about 10,000 diseases that are caused by individual mutations and could in theory be fixed with the treatment, which is known as germline gene editing because it involves using chemical scissors to snip harmful DNA out of an embryo’s genome.

Biologists in the US, China and South Korea used a powerful form of the technique called Crispr/Cas9 to cut out the gene that causes one of the most common of these conditions, hypertrophic cardiomyopathy (HCM), from sperm cells as they fertilised 52 eggs from a single healthy woman.

This incurable disease, which affects one in 500 people, thickens and stiffens the wall of the heart, sometimes leading to shortness of breath, palpitations or abnormal rhythms.

Findings published in the journal Nature show that scientists were able to get rid of the mutation that causes about 40 per cent of HCM cases by injecting a tailored version of Crispr/Cas9 into the woman’s eggs at the same time as they introduced the mutation-bearing sperm.

It is the first time that researchers have edited the genes of embryos and then seen them develop normally, partly because the embryos appear to be able to repair their DNA cleanly by using the egg’s genome as a template.

Attempts carried out in China over the past two years failed because they resulted in so-called mosaic embryos in which some cells had been fixed while others carried the gene.

There is a long way to go before the treatment can be used in IVF clinics. Ethical questions aside, the findings will need to be repeated in eggs from other women, while politicians and regulators will need further evidence that it is safe before they can consider legalising germline editing in the real world.

Even then, it will play second fiddle to pre-implantation genetic screening, where doctors examine the DNA of a couple’s embryos to see if any are free of mutations. In practice gene editing would be most useful for would-be parents who cannot produce enough healthy embryos, particularly if they carry dominant gene-linked disorders such as Huntington’s disease, HCM, Marfan syndrome and neurofibromatosis, which makes its carriers prone to cancers of the nervous system.

Peter Braude, emeritus professor of obstetrics and gynaecology at King’s College London, who was not involved in the study, said: “The possibility of germline genome editing has moved from future fantasy to the world of possibility, and the debate about its use, outside of fears about the safety of the technology, needs to catch up.”

Designer babies — the last taboo
Scientists heave a collective sigh when they hear the phrase “designer babies”. The words conjure up an elite race of children whose genes have been customised with methods that are as technically implausible as they are ethically fraught.

This is not what most experts fear. The real risk is that one of these days, in a fertility clinic beyond the intense scrutiny that attends every step of embryo research in most western countries, doctors will quietly slice an inherited disease out of a few embryos’ genomes and nine months later announce the birth of the world’s first gene-edited baby.
We know this because we have been here before. Last year John Zhang, a US doctor, used a different but scarcely less controversial technique known as mitochondrial replacement to create a “three-parent” baby in Mexico.
The global scientific establishment was appalled, particularly as the UK was still putting the finishing touches to a pioneering system for licensing this kind of experiment after more than a decade of thorough debate.
The trouble is that no matter how carefully we try to control the science, there will always be places where even the best-laid laws cannot reach. There is not much that experts can do to hold back their colleagues if they are determined to defy international convention, particularly if they are prepared to do so in countries whose regulations are vaguer or more permissive than those in Britain and the US.
This is true not only of gene editing but also of many ethical frontiers that are being challenged by the breakneck pace of biological discovery.
Sandy Starr, of the Progress Educational Trust, a biomedical charity, said the technology needed to be considered alongside projects such as the creation of animals that contain human cells and the generation of sperm and eggs in a dish.
“All of these are potentially exciting areas of research,” he said. “They all require careful regulation, and they certainly require the widest public and international debate before we consider permitting any clinical applications.
“Of course it’s always possible that someone unscrupulous will jump the gun, go jurisdiction-shopping, and travel somewhere to use an experimental medical technique in an unethical way. Even if they do, and even if they evade legal judgment, we can still subject them to our own moral judgment and find them wanting. Indeed, it becomes all the more important for us to do so.”

Mallory Locklear 1st September 2017: Pioneering gene therapy approved for leukaemia in the US

Parents want end to ban on testing of newborns for fatal (genetic) diseases

 

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A summary of health rationing in the news this last week. Weak (cowardly) politicians have led the NHS to ruin

Just this last week we can see evidence of removal, restriction, limitation or prioritisation decisions made by CCGs or Trusts. In addition the administration are unable to keep up with the complaints and requests for information. I myself have a request on perinatal and maternal mortality pending which is over the 8 weeks at Hywel Dda Trust. There are so many fingers in the dam that there are no hands to repair ur security and health systems.. As for the elderly demented, they don’t vote and don’t seem to matter… An IPR report on Death Dying and Devolution explains clearly the post code and unfair rationing of resources. Weak (cowardly) politicians have led the NHS to ruin 

Mark Smith for Walesonline 6th September: Thousands of complaints against the Welsh NHS are not being handled quickly enough

Health boards claim it is sometimes impossible to respond within the 30-day timescale

Forty percent of Welsh NHS complaints miss target

Tom Knowles exposes the temporary nature of the employment currently offered. In the Times on 12th Septtember: Summer hiring spree for builders and NHS

Adele Couchman in Kentlive on 12th September reports:

The number of nurses specialising in dementia and other mental health problems in the elderly has been cut by a fifth since 2010, according to “incredibly concerning” figures.

Psychiatric nurses treating older people have been among the hardest hit by a reduction in mental health staffing despite government pledges to prioritise the rise in dementia, analysis of NHS data for The Times shows.

While the overall number of NHS nurses has risen slightly over the past seven years, this has been due to increases in acute hospital and maternity services, helped by a recruitment drive after the Mid Staffordshire scandal. Figures from NHS England show that the number of mental health nurses working for the health service fell by the equivalent of almost 5,000 full-time posts between May 2010 and May this year, a drop of more than 12 per cent.

Old age psychiatric nursing is among the worst hit specialisms, with 1,000 full-time posts gone since 2010, a fall of 22 per cent, to 3,541 posts.

Older patients often need more intense monitoring and are susceptible to problems with medication and side-effects. A nurse’s role also involves emotionally supporting patients’ families and helping patients stay independent for as long as possible.

Caroline Abrahams, charity director of Age UK, said: “An ageing population inevitably means we need more psychiatric nurses specialising in work with older people, so the fact their numbers have shrunk by a fifth over the last seven years is incredibly concerning.
“Historically, older people’s mental health needs have often gone undiagnosed and been overlooked and these depressing figures provide no cause for optimism that the situation will improve any time soon.” She called for urgent government action. With psychiatrists for the elderly also overstretched, doctors say they are increasingly reliant on specialist nurses to help manage the rising need for treatment.
More than 850,000 people in Britain have dementia, a figure which is expected to pass a million within seven years.
Hilda Hayo, head of Dementia UK, said that the charity’s specialist dementia nurses and helpline were picking up cases of families under increasing pressure as a result of the loss of nurses.
“These reductions are coming at a time when people live for longer but are not necessarily healthier — and dispersed families are unable to provide the support needed,” she said. “More families are going into crisis and having to make decisions which may result in earlier admission to hospital or a care facility due to the lack of community support.”
A Department of Health spokesman said: “This government is committed to improving care for those with mental health conditions, which is why we have started one of the biggest expansions of services in Europe.
“Our ambition is to create 21,000 new posts by 2021 by supporting those already in the profession to stay and giving incentives to those considering a career in mental health.”

Death Dying and Devolution

Weak (cowardly) politicians have led the NHS to ruin

To get enough organs donated we need to lose a little liberty… The right to opt out should remain however…

Kat Lay on September 8th in The Times reports an exceptional daughter and family: Jemima Layzell, 13, revealed as record organ donor

Jemima Layzell had not heard of organ donation until two weeks before her death. When a family friend died in a car crash, however, the 13-year-old girl decided that she wanted to become a donor should the worst happen. Then, as she helped to prepare her mother’s birthday party, she collapsed with a fatal brain aneurysm.
It has now been revealed that her decision saved or transformed eight lives, the most by a single organ donor since the NHS was founded…..

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One wonders if she read the Times on September 5th: Children die waiting for donor organ

Too many children die waiting for a donor organ, health officials have said.
Last year 470 people, including 14 aged 18 or less, died while on the transplant list or within a year of coming off the list, sometimes because they had become too ill for surgery, NHS Blood and Transplant (NHSBT) said.
Of those, 22 adults and ten children were hoping for a new heart.
The organisation urged people to take Organ Donation Week, which runs until Sunday, as an opportunity to tell their families their wishes as to being a donor.
One four-year-old girl was starting school with a new heart this week. The parents of Evie Doherty, of Colchester, praised the family of the organ donor, saying that they had made a “selfless decision at a terrible time” which had given their daughter the gift of life.

Figures from NHSBT show that 43 children under 16 years old had heart transplants last year. There were 383 heart transplants in total in 2016-17.
Anthony Clarkson, NHSBT’s associate medical director for organ donation, said: “It’s lovely to see Evie going to school thanks to an organ donor.
“Sadly, too many children still die waiting for a transplant. Please tell your family you want to donate this Organ Donation Week. A few words can make an extraordinary difference.”
As of August 25, there were 6,414 people on the transplant waiting list — of those, 36 were aged under 18. Typically, children on the list wait 463 days for a non-urgent heart transplant, and 70 days for an urgent heart transplant.

The Times leader on the same day advocates an illiberal solution: Gift of Life – There is a simple way to bring about a sharp increase in organ donation

Organ transplants are a miracle of modern medicine. Ever more sophisticated surgical techniques and immunosuppressant drugs mean that organs from donors’ bodies save hundreds of lives a year. If England made one simple adjustment to the way it administers the donation system, it could save hundreds more.
At present, to be sure their organs will be used in the event of their deaths, would-be donors must sign up to a national register or tell family members to consent on their behalf, preferably both. This opt-in system requires people to think and talk about death, which many are reluctant to do. It is one of the reasons that England languishes near the bottom of the league table of developed countries for donors per capita. Hundreds die each year for want of a new organ.
The alternative is an opt-out system in which a deceased person is presumed to consent to donation unless he or she has specified otherwise. Wales introduced such a system last year: organ donation and transplants have since risen sharply, with only 6 per cent of the adult population opting out. The Department of Health says that it is “keeping a close eye” on developments to assess the case for following the Welsh example in England. Yet the case is already clear. It is the argument for delay that is unsustainable. This is one of those rare occasions when a cost-free, commonsense solution is available to an urgent problem. The task of policymakers is to seize it.
If more data were needed as a basis for action, the NHS has provided it to mark organ donation week, which runs until Friday. Last year 457 people in England died because they could not get a transplant and 460 organs suitable for transplant were not used for lack of consent. In addition, 875 people were taken off waiting lists for transplants and many subsequently died. More than 6,400 remain on these lists as consent is refused by family members of suitable donors at the rate of three a week, not because consent was withheld by the potential donors when they were alive, but because it was not actively given.
Without that consent families often hesitate and the window of opportunity closes. “A few words now can make an extraordinary difference,” the assistant director of organ donation at NHS Blood and Transplant says. This is true, and it is well established that knowing a loved one saved or transformed others’ lives by donating his or her organs can be of enormous comfort to the grieving. Yet a change to the law would make an even bigger difference.

Spain is the European country with the longest-running opt-out system and it leads the developed world in organ donation by a wide margin. Other European countries with similar systems, including France, Belgium, Ireland and Finland, all have between 70 and 120 per cent more donors per capita than England.
Theresa May gathered senior advisers yesterday to remind them that she wants to be remembered for more than Brexit, which is proceeding on the strength of a 52 per cent majority in last year’s referendum. According to the British Medical Association, a significantly higher proportion of the public — 66 per cent — would donate their organs after their death. This is a solid basis for an opt-out system, and the government should legislate to make it happen.

The case of Jemima today was repeated in 2014 (The Telegraph): Organ donation: The family who turned their grief into the gift of life – We meet the couple who decided, in the darkest of hours, to donate their child’s organs

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The cost of care is so great that we may end up exporting our elderly….

The cost of care is so great that we may end up exporting our elderly to countries which need to earn the foreign currency and where labour is cheaper than the UK. NHSreality has posted on care homes many times, but the issue is becoming even more acute.. Greg Hurst on August 16th in the Times reported: Find an extra 71,000 beds . . . and soon, care homes told. Why is government telling homes anything? The duty of care provision lies with the state unless and until we agree to ration elderly care out and deliberately hole the safety net. Sometimes, Greg points out, strangely inhuman decisions are made and this will become more common as couples live longer: Elderly couple were split up because Lincolnshire county council put contractors first

Alex Ralph reported in the Times 21st August 2017: Bupa deal set to create UK’s biggest care homes provider

An investment group that is set to be the biggest care homes owner in Britain has vowed that it will not become the next Southern Cross.
HC-One is poised to acquire about 120 homes from Bupa, possibly through a debt and equity deal amid unease about the implications for the group’s debt levels and with memories of Southern Cross’s collapse fresh in the memory…….

…The deal with Bupa, which would take HC-One’s estate to about 350, has caused unease, with scrutiny turning on the purchaser’s debts.
However, Chai Patel, HC-One’s chairman, said that it would have debt of about £500 million compared with an estate worth double that and compared the arrangement to a 50 per cent mortgage, which “you wouldn’t say was an imprudent thing to do”. He also said that the group’s debt was at fixed interest rates and “we are able to hedge them”.
“The balance sheet is strong and debt is very low,” he said.
Despite its historic links to Southern Cross, Dr Patel said that unlike the failed chain, HC-One retained ownership of most of its care homes. “There has been a lot of noise around Southern Cross and piles of debt,” he said. “Southern Cross was almost exclusively an operating company. The issue arose when they couldn’t afford to pay their rent. Actually it had remarkably little debt. So it wasn’t debt that brought them down.”
He said that HC-One, which completed a £287 million refinancing this year, had no plans to enter into any sale and leaseback arrangements.
“We think our capital structure is ideal . . . We would rather stay with that and from that cashflow grow the business. The capital structures work at the moment from a debt and equity point of view.”
HC-One would own the freehold of just over 300 homes, or about 85 per cent of its estate, should it complete the acquisition of the Bupa care homes.
Asked whether his investors would want to do sale and leasebacks in the future, Dr Patel said the group’s investors, which include Formation Capital, the private equity firm, and Court Cavendish, his turnaround vehicle, suggested that they would not and were instead “looking at the cashflows for this service [care provision] over a long period of time”.

 

Child mortality matters, but there are limited resources.. Charlie Gard.. Is this denial an allegory of our whole attitude to the Health Services?

There were celebrations following the life and death of  Bradley Lowery in Sunderland. Matthew Clifton reports in “blasting news” 9th July 2017:     The cases of Bradley Lowery and Charlie Gard highlight the importance of tackling child mortality logically.

Sunderland mascot, Bradley Lowery died this week and will be remembered for his continuing positivity right to the very end.

Child mortality matters. Avoiding spending resources on “lost causes” is important for all of us. Government’s duty is to populations ahead of individuals, and when the needs of the two conflict, and there is no way to prevent harm, they should come down firmly on the side of the population. This case is complicated by the private element, offering transport and treatment, the political element – outwith the English Health Service, and by the expectations of the parents (10% survival – meaning what: ventilation for ever?). The ethics of this are complicated… and there are always arguments on many stakeholder sides. 

The sad aspect to be tempted to denial is within the human condition.  reports: Charlie Gard’s parents tell GOSH that ‘if he’s still fighting, we’re still fighting’. 

Is this denial an allegory of our whole attitude to the Health Services?

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Connie Yates and Chris Gard spoke as they handed a petition to Great Ormond Street Hospital in London, calling for Charlie to be allowed to fly to the US for potentially life-saving treatment.

Speaking to reporters, Connie said that Charlie has a 10% chance of survival if he receives treatment in the US – and that that’s ‘a chance worth taking’.
‘He’s our son, he’s our flesh and blood,’ she said. ‘We feel that it should be our right as parents to decide to give him a chance at life.
‘There’s nothing to lose. He deserves a chance.’….

In the United States the death of children is often in the news, but children are always dying. Its just that some parents have the ability to get more (or less) publicity. Enlisting the help of social media, crowdfunding for experimental (unproven) treatments, and getting support from religious authorities helps the media case. Here are some news items form the last few days..

WTCV reports: Death investigation underway after baby is found dead on Tunnel …

Big County Hhome page reports: Abilene man accused of starving infant to near death gets 6-year …

CNN reported 6th July: Georgia mom accused of killing 4 children and their father

Plea deal allows SE. Minn. driver to admit to a DUI for killing boy in child’s wagon

Two other counts are dropped against the man, who was not charged with a felony.

 

And in Australia midwives need to think carefully about the risks associated with home delivery.

Nigel Hunt and others in Adelaide Advertiser report: Midwife Lisa Barrett charged with manslaughter over deaths of two babies following homebirths

Joan Desmond reports on the National Catholic Register 8th July 2017: Catholic Bioethicist: Authorities ‘Usurped’ Role of Charlie Gard’s Parents – The culture of death has poisoned the relationship of trust that should bind physicians, patients and loved ones

Charlie Gard’s parents have ‘best interests’ tooMatthew Parris

Sometimes we watch a news story that, though important and reported fairly, we somehow feel we shouldn’t be watching at all. Such is the case of the sick baby, Charlie Gard. Words cannot express what every Times reader must feel at the pitiful sight of Charlie’s parents, two good people motivated only by love, wounding themselves before the eyes of millions; and all to no purpose.

I cannot re-hash the whole sad story, nor venture opinions about medical science. I do though have a modest suggestion about the law and how this case might teach us to nudge it. So I shall try to explain why, through nobody’s fault, the judges have been painted into a corner by a six-word phrase whose wisdom and humanity is hard to dispute: “the best interests of the child”.

It’s perhaps helpful to tell you that I have not the least difficulty with the idea of ending life where life is meaningless or unbearable. Nor do I question advice that the “nucleoside” treatment Charlie’s parents want for him stands no chance of success. Great Ormond Street are making the medical case, as any hospital should. Their statement through their lawyers yesterday is a fine, delicate, compelling piece of writing. Do read it: https://tinyurl.com/y85x3cu5. With hardly a word could one disagree.

But let me put it simply: I too would let this baby die, were it not for his parents. This is probably the majority opinion among the public, too. A few may believe in miracle cures, but most would put it, crudely, like this: “Look, he’s going to die anyway. If his parents are so sure he could be saved, why not let them try? He’s unconscious. What is there to lose?”

I feel that, if mildly, myself. Many feel it more strongly, many too strongly. The public demonstrations outside the High Court and the hospital are inappropriate and have an unhealthy smell of the mob justice that seems to have infected us in recent times. The sentiment that anybody’s opinion is as good as anybody else’s has corroded national life. Death threats to hospital staff are odious, owing something to the lynch-mob, “enemies of the people” mentality fanned by some of the popular press when Gina Miller took the government to court over Brexit. Lawyers and judges are right to bristle. Careless expressions of the democratic impulse have been way too strong.

But the response of a nettled professional class has also been too strong. Public opinion does count. Book-learning isn’t everything. The 19th-century jurist AV Dicey has been much quoted of late — “The judges know nothing about any will of the people except insofar as that will is expressed by an act of Parliament” — but Dicey is wrong. Judges have immense leeway in interpreting the letter of the law, and (consciously or otherwise) have always been influenced by the prevailing climate of opinion, and rightly. The very term “reasonable”, central to the interpretation of law, makes implicit appeal to public moral sentiment.
How, then, have judges (as it seems to many) lost sight of the man on the Clapham omnibus in the Charlie Gard case? The answer is that the judges have to keep sight of due process and the rule of law. The law says the “best interests of the child” must prevail, so because the parents’ belief that nucleoside treatment may save their baby is almost certainly wrong, the courts keep ruling against them. That legal principle, “in the best interests of the child”, has a long history here and abroad, both in statute and in precedent. It has stood the test of time. It is simple, intelligible and usually right. In most cases public sentiment would support it, for the obvious reason that parents don’t always act in the best interests of their children, and the courts should be able to stop them, whatever the parents want.
In medical cases courts can overrule parents, however loving, who for religious reasons would deprive their children of medical treatment. Most of us would agree. We know the law may interfere in family matters not only in cases of neglect or abuse, but in cases where there is disagreement in good faith with devoted parents on a matter of conscience or belief.
Why then does public sentiment shrink from overruling the parents in the Charlie Gard case? The answer is simple. Almost nothing is at stake for this child, and so, weighed against the lifelong grief of parents who will always believe their baby might have been saved, we would (most of us) let the parents’ interests prevail over the very nebulous “interests” of the child. But that does at first sight seem to conflict with a law that says the child’s interests, though feather-light, must outweigh.
Perhaps there’s a way through? Perhaps we could keep the “best interests of the child” rule, but define a child’s interests in a way more generous to its parents.
You will know that judges cannot rewrite statute or precedent, but in English law they can nudge both by the creative way they may reinterpret the meaning of legal language. Judges do this all the time: an important way of letting law change with the times.
Chris Gard and Connie Yates will always believe an American doctor might have saved their son. If the courts stop them trying, all the years they have left will be haunted by grief that he was wrestled from them by the law. If Charlie could ever be conscious of this, would he have wanted it?
May we not have interests of which we will never be conscious? Is it not in the child’s interests that his parents be spared great harm after his death? Had I a son, and were I hospitalised in a permanently vegetative state, there’s surely a sense in which I would still have an interest in my child’s welfare. Why can that not be true the other way round? My proposal needn’t trump the child’s more direct interests, and might only have comparative weight where the child’s direct interests (as in the Charlie Gard case) are anyway negligible, for he hardly has a life.
The Ancient Greeks believed a whole life was devalued for want of a good death, whether or not the deceased knew it. A good death for Charlie now would be one where he died in circumstances where his parents knew they had done all they could. Why not let them; and let that be Charlie’s legacy too?

Letter responses:

Sir, Matthew Parris’s article on the Charlie Gard affair (“Charlie Gard’s parents have ‘best interests’ too”, Comment, July 15), is compassionate and thoughtful. But the idea that because Charlie is unconscious and will not suffer, there is no harm in allowing the proposed treatment — and some reassurance for the parents — is a recipe for experimentation on the unconscious patient in someone else’s interests.

We have chosen judges to make these Solomonic decisions. Parris’s argument that such judgments should take public opinion into account, and that judges have “lost sight of the man on the Clapham omnibus”, is spurious. Judges listen to the facts and decide according to the law.

Charlie’s interests are not “nebulous”, as Parris puts it. They are very real, and include not being used as an object of experiment. Only if there is real evidence that the proposed treatment has a chance of working should he be subjected to it.

Hard cases may often make — as in this case — bad law.
Dr Tim Howard

Corfe Mullen, Dorset

Sir, I am becoming increasingly dismayed at the view that the only people who have a right to decide what is in Charlie Gard’s best interests are medical experts. Over the past few weeks I have seen Pope Francis’s offer of help at the Vatican hospital described, bizarrely, as “cruel” by one leading commentator.

The Pope is expressing some fundamental views of the Catholic faith, namely that every human being has an inalienable dignity. If treatment in the US, whether experimental or not, is the parent’s only hope, then compassion says let the parents have the chance to try the treatment.
Mark Behan

Blackburn, Lancs

Sir, Doctors at Great Ormond Street have done all they can for Charlie. However, it was not right that the hospital sought a High Court ruling to end Charlie’s life. Neither is it right that the law should arbitrate between hospital and parents. Agencies of state should not decide this matter.

While there is an option, however experimental, it should be encouraged. Public donations have raised funds for the little boy to go to America for evaluation and possible treatment. Doctors here should support this. Charlie’s parents should not have been dragged through such inhumane proceedings. And at a secondary and utilitarian level Charlie Gard might be of help and benefit to others in time to come.
The Rev Dr Robert Anderson

 

Government managed DNA testing is not risk free for individuals.

Do I really trust the government with my genetic information?

The answer is yes when I am over 65, and if the information obtained might help my children or grandchildren. Will I be thinking of the population as a whole? No. Will I be reluctant if I might carry a psychiatric gene? Yes. This might prejudice the employment prospects for my descendants if leaked… and it will leak. The ethics and the perverse incentives and perverse outcomes of a genetic data base need frank and full and open discussion before we go down the route proposed by the Chief Medical Officer. What could be the effect on your Private Medical Insurance premium, or your children’s life insurance premium? Whilst the health service argues about exclusions and co-payments it will fail to discuss these options openly, and it will be the same with a genetic database. NHSreality appreciates that governments are concerned with populations, and not individuals, but they will need to prove this concern in not distorted, and model any system in advance for genetic testing. The possible exclusion of paracetamol is cheap and risk free for each one of us. DNA testing is not… But it is good news that the option is coming..

Michelle Roberts for BBC news reports today: Chief medical officer calls for gene testing revolution

In the Times Chris Smyth reports: Give every cancer patient a DNA test, says health chief Dame Sally Davies

 

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Every cancer patient must have genetic testing on the NHS to bring an end to “one-size-fits-all” treatment, the chief medical officer has ruled.
Professor Dame Sally Davies demanded that DNA testing become a routine part of treatment within five years to allow for individually tailored care. Two thirds of cancer patients could receive more effective drugs or be spared side-effects by the testing, she predicted, adding that those with rarer diseases could be diagnosed faster.
The NHS must make a centralised DNA testing service to ensure patients have results within weeks and end the “cottage industry” where different hospitals use data differently, she said.
The potential of such medicine has excited doctors since the human genome was sequenced two decades ago. The NHS began a test programme three years ago, with tens of thousands of patients in 11 hospitals given routine DNA testing to determine treatment.
In her annual report, published today, Dame Sally said it was time for this to become the standard across the country, demanding that the NHS make Britain the first country to test the DNA of every patient with certain diseases. “I want it to be considered part of normal care, indeed an expected part of care,” Dame Sally said. She said that data from the test showed that 60 per cent of cancer patients have “actionable genes which either said ‘don’t treat with standard treatment that would be unsafe’ or ‘try that’, so we know that for two thirds it can impact on personalising treatment. That is going to go up.”

About three million people in Britain have one of 7,000 rare diseases and at present it takes an average of five doctors, four years and three misdiagnoses before they find out what is wrong. Genetic testing can give an immediate answer and Dame Sally said this should be routine within a couple of years.

Routine testing would also start quickly in patients with some types of cancer before being expanded, she said. “My dream is that in the end every patient has their genome done if they’ve got cancer,” Dame Sally said.

Jeremy Hunt, the health secretary, has backed Dame Sally’s vision.

Tests have already established the principle that cancer can be treated according to its genetic signature rather than where in the body a tumour is.

Professor Sir John Savill, chief executive of the Medical Research Council, said the plans were “a landmark report of great national importance”.

Analysis
The names for tumours — breast cancer, skin cancer and the like could soon be seen as relics of the pre-genomic era. It is increasingly apparent the genetic make-up of the patient and their tumour are often more important than where it is found.

Personalised genetic treatment has been hyped for two decades but we may be on the cusp of making it a reality. One key reason is that the cost of sequencing has fallen from billions in the 1990s to £700 today. The main barrier may be attitudes. Will people be happy with a database of their genetics? Insurance companies will not be allowed to see it but researchers may.

Professor Dame Sally Davies is blunt: if you don’t allow genetic data to be gathered, your treatment will be worse as doctors will not understand the best way to treat you. After the debacle of the attempt to centralise GP records to boost research, she is banking on self-interest being more effective than altruism.

 

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Is there enough awareness to get away with rationing by exclusion? A two tier system in evolution…

There are so many low cost high volume treatments that could be rationed out by exclusion. From nit treatment to alternative food products. Some of them should go for pragmatic reasons, and some for the encouragement of autonomy. Wales will be the last region to recognise this, and this is the region where Private Medical Insurance ( PMI )will cost more, eventually, as low volume high cost treatments are the only other option. The two tier system will emerge first in Wales as those who can afford it buy choice, either directly or through PMI.

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The Times 3rd June reports: Paracetamol on prescription costs NHS millions

The NHS spent more than £70 million giving paracetamol to patients in England last year despite it being available over the counter at a fraction of the cost.
GPs issued more than 21,740,000 prescriptions at £3.23 per item even though the pills are sold for as little as 19p in shops. The figure, revealed in response to a parliamentary question by Grahame Morris, the Labour MP, shows that the bill fell from £84.86 million in 2015/16 and £86.88 million the year before. Over five years the cost was nearly £400 million.
NHS England has announced plans to develop new national guidelines on prescriptions for medicines such as gluten-free foods and travel vaccines that are available in supermarkets and chemists. Mr Morris said it was irrational to provide paracetamol on prescription. “At a time when the government is placing extreme funding pressure on our health service, we should seek avenues to make savings where they will not affect patient services,” he said. “There will be a number of low-cost readily available drugs which could be supplied in such a manner.”