Monthly Archives: September 2017

NHS for sale – property assets are the “family silver”. Staff may leave/emigrate/retire, and are doing so, but the property, once gone, is no use, and selling it just delays addressing the ideology.

Just as our politicians seem short of ideas on Brexit, they are similarly short of ideas on the Health Services. Selling off property is the latest short term suggestion. If the health services were truly national, we would never sell their properties off.

When I was newly qualified I was the beneficiary of subsidised housing, and as a Trainee GP in Mid Sussex this was a very helpful benefit. When I was interviewed my wife attended with me, and on seeing the accommodation jabbed me in the ribs to suggest I should not refuse any job offer. Similar benefits were available to new consultants, especially those moving to unpopular or remote areas of the country. In West Wales, Withybush Hospital owned houses around the town, and a few together on an estate. It was tempting for new staff/consultants, and when shown the potential accommodation this often clinched the deal. All this housing was sold off in the 1980s, and it is now far harder to attract staff..

These 4 are our Health Services. Surely we the citizens and taxpayers should be asked about the selling off of land. By all means lease or rent it, perhaps for many decades, or exchange it for land with better public transport links, or more space, but please do not sell it straight out.

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Fiona Goodlee in the latest BMJ writes: NHS for sale (BMJ 2017;358:j4485 )

Selling off unused or underused estate sounds like a good idea for any organisation in need of funds, and the NHS is certainly that. The Naylor Review, published in March (doi:10.1136/bmj.j2072), concluded that a sale of NHS buildings and land would raise £5.7bn (€6.5bn; $7.7bn) and save a further £1bn a year. Along with government and private investment, a total of £10bn could be reinvested in the NHS. The government has yet to respond formally, but the prime minister has said that she supports the plan. Robert Naylor sets out his stall in The BMJ this week (doi:10.1136/bmj.j4290), promising that selling estate is not privatisation or a “fire sale” but a reinvestment of wasted assets to improve patient care. All we need now, he says, is to get on and do it.

What possible concerns could there be? Kailash Chand, a GP in Manchester, has a few (doi:10.1136/bmj.j4290). Some of the buildings proposed for sale are in active use, so services would have to close or merge. There has, he says, been insufficient consultation and limited scrutiny of the plans—a further report by Naylor on London’s NHS estates has not been published, because of “commercial confidentiality.” The March Naylor Review said that properties could be converted into affordable homes, but there is already enough land in the hands of private sector developers to meet this need, says Chand, and once land is sold to private developers there is no guarantee as to how it will be used. Central London hospitals would contribute most of the sales, far more attractive to private developers than long derelict general practice surgeries in small towns.

The NHS sustainability and transformation partnerships (STPs) have become the driving force for saving the money needed to fund NHS England’s Five Year Forward View. But health professionals and the public are being misled about their purpose and outcome, say Allyson Pollock and colleagues (doi:10.1136/bmj.j4279). Rather than being about integration of health and social care, they (and the linked devolution of services to local authorities) are about reducing services and entitlements, increasing private provision of publicly funded services, and, potentially, introducing charges for health services.

Is this simply a clash of ideologies, or is there something more fundamental and worrying going on? Pollock and her colleagues have been right on other things, notably the damage done to the NHS by private finance initiatives (doi:10.1136/bmj.c7175; doi:10.1136/bmj.d324). This doesn’t mean they are right on STPs, but it does mean we should listen and respond to what they have to say.

Head to Head: Should we welcome plans to sell off NHS land? (BMJ 2017;358:j4290 )

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A “moral vacuum” at the heart: Nurses ‘have no time to show compassion’ and need a leader with a moral compass.

Chris Smyth in the Times reports 26th September: Nurses ‘have no time to show compassion’

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A “moral vacuum at the heart of nursing” has left NHS staff following tick-box rules rather than trying to do the right thing for patients, a study of professional values has concluded.
Nurses are so ground down that they end up as “robots going through the motions”, researchers warned, with a focus on clinical skills driving compassion from the job.
Eight in ten nurses say their work conflicts with their personal values much of the time. The moral disengagement that results puts patients at risk of another Mid Staffordshire-style scandal, the study concluded.
Kristjan Kristjansson, an educational psychologist at the University of Birmingham, said the state of nursing was far more depressing than that of any other profession he had studied, including lawyers, teachers and doctors.
“When you’ve been working for five years or more, usually you realise that following the rules is not the only important thing, you have to rely on your own moral compass.

But the nurses didn’t,” he said. “We have identified a moral vacuum at the heart of nursing in the UK.”
His study of 700 nurses found 45 per cent saying they acted the way they did because it was what the rules decreed, rather than because it was the right thing to do.
“Their only standard was what was written down in the codes,” Professor Kristjansson said.
“They are the only professionals where reliance on their own character compass does not pick up as they gain more experience. This fact probably says a lot about the current state of nursing.”
He argued that this directly affected patient care, saying: “If you’re a patient, you can tell if a nurse is just going through the motions.”
The problem was nurses feeling they did not have time to care for patients properly, putting them in greater conflict with their own ideals than other professionals, he said.
“Nurses say they don’t have time to show care and compassion,” he said. “Often there have been times when they come away from patients feeling they did not do as much for those patients as their hearts dictated and that the patients did not receive the care they deserved.”
Professor Kristjansson said that retreating to a “Mr Spock mentality” where they just followed the rules means they would struggle in a morally stressful situation such as that at Mid Staffs, where few nurses spoke out against neglect of hundreds of patients.
“There won’t be any whistleblowers, people will just turn into automatons, robots at work,” he said. “The only thing that seems to wake politicians up is a new crisis, which is very sad.”
While saying that it was positive that nurses were now seen as professionals requiring degree-level skills, rather than simply being doctors’ assistants, Professor Kristjansson said this had come at a cost.
“The pendulum has swung too far in the other direction, away from the ethical core of nursing,” he said. “The whole professional duty since the days of Florence Nightingale has been not only the administration of medicines correctly but creating an ethos in the hospital that puts patients at ease.”
Sir Robert Francis, QC, who chaired a public inquiry into the Mid Staffs scandal, backed Professor Kristjansson’s call for more emphasis on virtue and character in nurses’ training.
“A commonly accepted set of values has to be the foundation of professional practice to enable those with this vocation to navigate the ethical dilemmas they face daily,” he said.
Janet Davies, chief executive of the Royal College of Nursing, said the report “demonstrates the emotional pressure on caring professions who, when faced with an inability to work as they know they should, become compromised”.

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NHS pay scales 2017-18 | Royal College of Nursing

Check average Nurse salary | Nurse salary information on totaljobs.com.

Nicola Merrifield in the Nursing Times: Plans to end public sector pay cap ‘must make up for lost nurse earnings’, say unions

Paul Francis in The Medway Times 25th September: Nurses from Philippines going for jobs at Medway Maritime Hospital fail English test 

Methods of rationing in the news… Telephone triage, scrutiny of referrals, larger practices, reducing standards, reducing access, excluding treatments. So many different and covert methods of rationing. No political party offers the honest option. No wonder we are disengaged.

So many different and covert methods of rationing. Why not be honest and overt? You know it’s true but as yet no political party offers the honest option.

Melissa Jacobs in Pulse 29th August 2017 reports: CCGs are formulating plans to scrutinise practices’ referral systems after a leaked NHS England memo showed they have promised to incentivise peer review schemes in order to reduce referrals by 30%, Pulse has learnt and the BMJ reports: NHS (England) orders peer review of all referrals by GPs.

BMJ Correspondence shows that there is no “evidence” behind this decision and doctors resent it. Now that a large proportion of first primary care appointments are with nurses, untrained in differential diagnosis, we expect the referral rate to rise. It is rising anyway because of demographics, fear of litigation, referral guidelines and less ability to “live with uncertainty”.

this was followed by the Guardian, and in the Local Government Journal the next day:

that “Health England issues sexual health services warning”, and this is confirmed in Pulse 30th August by Alex Matthews-King: PHE report raises concerns over sexual health services provision

How can we cut the main expense of referral? This question is always being asked by the minister and his team. By bureaucratic rationing..

Secret NHS cost-cutting drive to reduce hospital referrals revealed

and the BMJ’s Margaret McCartney: “Are we reviewing GP referrals for the right reasons?” (BMJ 2017;358:j4240 is) the most erudite critique. It begs the Question “are we training GPs for?” Is the definition to be reviewed?

James Rodger reports 31st August in The Birmingham Mail reports that; Social care system ‘not fit for purpose’ – nine out of 10 MPs feel it is failing – A survey of 101 English MPs found that only 10% believe the current social care system is suitable for the UK’s ageing population. Rationing by ignoring?

In the Times 28th September Chris Smyth reports: Phone screening is no help to overstretched GPs 

in my experience there are some GPs who are willing to triage with more risk than others. This risk acceptance changes dramatically at the first time-consuming complaint. – whatever the outcome. Now that some practices are experimenting with higher risk and reduced confidentiality it will be interesting to see if their Defence and Insurance premiums rise. Chris Smyth reports in the Times 26th September: GP receptionists screen patients to cut surgeries’ workload – access is being rationed…

Patients prefer a good relationship with their doctor, but practices are getting larger and more and more doctors are part time. So continuity of care and the trust that went with it have disappeared. The CQC (Care Quality Commission) as reported by Laura Donelly in the Telegraph 21st September that “Small GP practices pose the worst risk to patients’ health” but it is small practices that are most appreciated and popular with patients when they are run well by committed doctors. The irony of this seems to be lost on Politicians… Now that GPs are not committed to 24 hr service, there is no reason that they could not work in smaller groups, even if administratively they are in large practices.

We have rationed training places, and reduced the value of nurse training so much, that we now import them. (We may be exporting our elderly eventually). The Times reports that 90% of recruits fail their language test, and the government response is to suggest the language test is too stiff. The is rationing by standard reduction and has been done in other areas …

Important treatment options are being excluded if you don’t have the means or the right insurance policy. Oliver Moody reports 25th September in the Times: Parkinson’s disease sufferers denied key US drugRationing by exclusion.

looking at some other areas that continue to be rationed:

Orthopaedics and pain from Arthritis: NHS ‘rationing leaves patients in pain’ – BBC News 7th July

Palliative Care: NHS rationing ‘leaving dying patients to suffer in pain’ report warns (Telegraph 14th March)

Different Trusts have different death rates: but UK citizens outside of England cannot compare their local Trusts.

Surely citizens have a right to comparable information on the most important outcomes IF they are to be treated within a National Health Service. Unfortunately it is not National. Outcomes differ by Post Code and Region. Different Trusts have different death rates: but UK citizens outside of England cannot compare their local Trusts. Our politicians are bringing back fear.. by neglect.

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Henry Bodkin 21st September 2017 reports: The Telegraph reports: Revealed: death rates for NHS trusts 

Patients are dying at a higher than expected rate at ten NHS hospital trusts, raising “alarms” about their safety, new figures reveal.

Campaigners have condemned as “very troubling” official mortality data suggesting significant numbers of unnecessary deaths at seven per cent of all English trusts.

Five of these institutions, including two named in a national report into serious hospital failures, have shown an unexpectedly high number of deaths for the second year running in the 12 months up to March 2017.

They include important centres such as the South Tyneside NHS Foundation Trust and Blackpool Teaching Hospitals NHS Foundaiton Trust.

The Summary Hospital-level Mortality Indicator (SHMI) scheme uses a number of factors to predict how many patients would be expected to die at a specific hospital assuming everything is running well.

It allows health chiefs to then compare the actual total against this projection as an early warning for institutional safety issues.

The scheme was set up in response to the Mid Staffordshire scandal, where up to 1,200 more patients died over three years than would have been expected.

While official statisticians stress a high SHMI score does not necessarily indicate poor performance, they say it “should be viewed as a smoke alarm which requires further investigation”.

Wye Valley NHS Trust and United Lincolnshire Hospitals NHS Trust also made the outliers’ list for the second consecutive year.

Hugh Williams, Deputy Chief Executive of Action Against Medical Accidents, said: “The latest figures analysing hospital mortality are very troubling.

“The Government and Care Quality Commission have to make sure that everything that can be done is being done to investigate hospital deaths and ensure high quality care.

“If there are any problems action needs to be taken quickly to find out what has gone wrong, to be open with the families concerned and to make sure improvements are made and sustained.”

Both Blackpool and North Lincolnshire hospitals were named in a 2013 review by the medical director of the NHS into 13,000 needless deaths across 14 trusts.

The new figures also found that 17 trusts had a lower than expected number of deaths in 2016-17.

They included some of the major London trusts, such as Barts Health, Chelsea and Westminster, and Imperial College Healthcare, as well as Poole and Cambridge hospitals.

The data is published as as the Government is considering capping the costs payable to lawyers acting for a wide range of victims of NHS negligence.

A spokesman for South Tyneside pointed out SHMI data was “misleading” for that trust because included mortality data for a local hospice, adding: “We have very robust systems in place to regularly review and learn from impatient deaths and people can be absolutely reassured that our mortality indicators for South Tyneside District Hospital are within the expected range.”

The Ten NHS Trusts with higher than expected deaths in 2016-17

  • Blackpool Teaching Hospitals NHS Foundation Trust (second year running)
  • James Paget University Hospitals NHS Foundation Trust
  • Northern Lincolnshire and Goole NHS Foundation Trust
  • South Tyneside NHS Foundation Trust (second year running)
  • Southend University Hospital NHS Foundation Trust (second year running)
  • Southport and Ormskirk Hospital NHS Trust
  • The Royal Wolverhampton NHS Trust
  • United Lincolnshire Hospitals NHS Trust (second year running)
  • Wrightington, Wigan and Leigh NHS Foundation Trust
  • Wye Valley NHS Trust (second year running)

And 22nd November 2017: ‘The weekend effect’ means 11,000 extra NHS deaths a year –  Research finds that NHS patients are twice as likely to die after being admitted to hospital at weekends, with significant differences in mortality even when greater number of emergencies are taken into account

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A 150% increase in patients going private is an indictment of the UK Health Services… Successive health ministers have ensured a thriving pprivate system.

Mr Prescott conveniently ignores the fact that all health care systems ration, but some do it honestly and not dishonestly. It is new technologies which are advancing health faster than the ability of any state to fund them. At the same time the demographics are changing, and age related conditions, ( and multiple pathologies ) are being treated better. The overwhelming burden of expectancy means citizens will not tolerate being “second class” for important game changing treatments such as cancer drugs, or gene therapies. Delays in waiting for operations, without which patients increase their risk of cardiovascular disease and diabetes, by inactivity and weight gain, are driving patients to go privately. It is a “gain” for the health service when they do, as the ultimate expense is less. Some 10 years ago 10% of patients went privately. Now Mr Prescott says 25% go privately: is that not an indictment of the UK Health Services? This is 150% increase over 10 years, or 15% change per annum. Successive health ministers have ensured a thriving private system. When is any party going to encourage self care? The pragmatic use of prescription charges as in the Isle of Man?

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John Prescott writes in the Mirror 23rd September 2017: Labour must make NHS the big issue to secure its place as Government-in-waiting, says John Prescott – Labour legend Prescott says Tories are dragging country into cruel American insurance-based system

Two years ago at Brighton, the Labour Conference felt like a wake.

Jeremy Corbyn had just been elected leader and he didn’t have many supporters among the MPs and delegates.

Now he commands respect across the party and we’re a Government in waiting. This week, Labour must build on that. And for me, the big issue is health.

The NHS was based on a socialist principle that every man, woman and child should receive medical treatment based on need, not your ability to pay.

More recently it was changed to the provision of treatment free at the point of use. I used to wonder if this was the same. Events have now shown it’s not.

Before the NHS, as an ill 10-year-old boy, I watched my mum scrape around for half a crown to pay a doctor to visit me in bed.

My little brother, who was born with a cleft lip and palate, underwent 21 years of free, highly professional treatment on his face.

When I was a steward on a Cunard cruise liner, one of my passengers was a rich American who had with him his son of 15, who had the same condition as my brother.

I asked why his son’s disfigurement had not been removed. He replied: “I couldn’t afford it at the time and I didn’t have the insurance.”

Under the Tories, it’s that kind of American insurance-based system we are heading towards.
More and more patients are beating NHS rationing and delays to get private treatment, paying up to £15,000 for hip or knee replacement ops.
Private hospitals claim the number of these “self payers” have increased by up to 25 per cent in the last year.
Now we hear one GP surgery tells its NHS patients to sit on hard wooden seats instead of the comfier leather chairs reserved for those who go private.
It’s like Ryanair offering perks and priority queue-jumping for those who pay more.
I’m proud to have belonged to a Labour Government which put billions into the NHS so we could reduce waiting times for operations from 18 months to 18 weeks.
But the Tories have taken us below the European average of GDP expenditure on health that Labour met, forcing a crisis in our NHS.

Staff shortages, the closure of hospital units and A&Es have created massive queues of people waiting for treatment. This intentional crisis has encouraged the growth in a very profitable private sector, driving up costs on our NHS.
As a diabetic, I spend a lot of time in medical centres.
I see elderly people go there for treatment, especially for their feet.
When it was based on need not your ability to pay, there was a greater priority to be seen.
But free at the point of use takes in no consideration of speedy treatment and they have to wait longer in pain.
Now is the time to be radical about properly funding our NHS.

A total of 66 per cent of people said they’d pay more tax for the NHS if they knew the money was hypothecated or ringfenced purely for treatment.
I did it when we introduced the London congestion charge, with the money going only to improve public transport.
A properly funded NHS with a public – not private – insurance to deliver speedy treatment would benefit the many, not the few.

BBC News: Isle of Man prescription charges could net £3.8m, says health minister  

 

 

Waiting is increasing Nationally: It’s nothing really if – “Cambridgeshire NHS patients face three-month wait for routine surgery”

As the Health services disintegrate, NHSreality will try to highlight the disparities between areas. Post Code rationing is in the main covert, but in some cases patients have found out and moved in order to gain access to treatments rationed out in their own area. Cambridgeshire has had it good, and a three month wait for routine surgery is nothing for the people of Wales. Wait and see the response when “emergencies” are also rationed… Cambridgeshire and the South East are the richest parts of the country, but there are areas of poverty and deprivation within the South…. As the 4 health services disintegrate it will be the poorer people who suffer most: exactly the opposite of Aneurin Bevan’s intent… (In Place of Fear A Free Health Service 1952 Chapter 5 In Place of Fear)

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Chris Smyth reports in the Times 22nd September 2017: Cambridgeshire NHS patients face three-month wait for routine surgery

Patients will be forced to wait at least three months for routine surgery as increasingly desperate health chiefs use treatment delays to cut costs.
Thousands of patients in Cambridgeshire will have to wait twice as long as they do now for procedures such as hip and knee replacements under the most radical rationing plans to come out of a tough NHS savings drive.
Doctors and patient groups condemned the “unjustified” minimum wait policy, which they said would lead to patients getting more ill while they were denied life-changing treatment.
Ministers ordered an end to “unfair” minimum wait policies six years ago after a report found that NHS bosses were attempting to control costs by delaying treatment, during which time some patients would give up, go private or die.
The method is being revived in one of 14 areas of the country that have been told to “think the unthinkable” to bring down spending.

Under an opaque initiative known as the capped expenditure process, bosses have been told to do what it takes to get outgoings below a certain figure.
NHS Cambridgeshire and Peterborough says in recent board papers that demands from regulators for further savings mean that it will have to introduce a minimum wait of 12 weeks for non-urgent elective procedures. It says that the policy will ensure “a one-off saving to the system in the current financial year”.
Derek Alderson, president of the Royal College of Surgeons, said: “We are concerned minimum waiting time policies may become commonplace. Longer waits simply make an already stressful situation even worse for patients and their families.” He added that the policy “merely kicks the cost further down the road”.
Professor Alderson said he was concerned that managers rather than surgeons would decide which patients were urgent, asking: “Will patients that are unable to walk now be forced to wait an arbitrary number of weeks for life-changing knee replacement surgery?”
Jonathan Dunk, acting chief officer of Cambridgeshire and Peterborough Clinical Commissioning Group, said that “emergency life, limb, sight or hearing treatment, or cancer diagnoses and treatment” would be excluded from the policy. However, he said: “As part of cost management for the local health system we are proposing that 12 to 18 weeks would be the expected waiting time for adult non-urgent cases.”
A spokeswoman for NHS England said: “The NHS has always had to live within the budget that parliament allocates and it is unfair if a small number of areas in effect take more than their fair share at the expense of other people’s hospital services, GP care and mental health clinics elsewhere in the country.”

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Stephen Morris in the Guardian 30th August 2017: Wales: number of people waiting more than a year for surgery up 400%

Labour-led Welsh government under fire after Royal College of Surgeons reveals number in year to March was 3,605, up from 699 in 2013

August 10th: NHS waiting times: The facts | Wales – ITV News – ITV.com

BBC News 28th Feb 2017: NHS Scotland waiting time target missed

The Belfast Telegraph 24th February 2017: Northern Ireland hospital waiting lists ‘spiralling out of control …

NHS patients’ rights – Citizens Advice Northern Ireland

Waiting times – Health rights | NHS inform

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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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