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.
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. Sunday 9 Jul 2017 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?
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..
Big County Hhome page reports: Abilene man accused of starving infant to near death gets 6-year …
And in Australia midwives need to think carefully about the risks associated with home delivery.
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’ too – Matthew 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?
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.
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
When the Times reports (Kat Lay) that there is such a vast shortage of GPs that we are going to repeat the recruitment drive of the 1950s, then you know there has been a dereliction of manpower planning. The duty of government is to protect it’s citizens. It has failed. Short termism, and not listening to the profession has led to this demise. Rationing of medical school places, avoiding more graduate entry, and preferential selection of female candidates at age 18 when they perform better than men, are to blame. Somebody needs to recognise that it takes 10 years to train a GP, and longer if they have children. Part-time GPs are unable to deliver as much continuity of care. The shape of the job is partly to blame as well. It’s too late. It’s going to get worse, especially for those living in deprived areas. And the overseas doctors recruited will block places for our own in 10 years time! Perhaps they could all be over 60 and on short term visas? And how about an apology to those aspiring med students who were rejected?
The NHS is set to recruit 2,000 foreign GPs — quadruple the previous target — in a drive to combat a shortage of family doctors.
Simon Stevens, chief executive of NHS England, said it would target other EU countries as well as Australia and New Zealand.
Last year health service bosses set a target of recruiting 500 overseas GPs at an expected cost of £30 million. The new target comes after figures showed that the number of GPs was in decline, despite a government pledge of 5,000 more by 2020.
In an interview with the Health Service Journal, Mr Stevens said: “Although there are some good signs of progress on increases in the GP training scheme, nevertheless there are real pressures around retirements.
“And so the conclusion we’ve come to is that in order to increase the likelihood of being able to have 5,000 more doctors in general practice, we are going to need a significantly expanded industrial-scale international recruitment programme. We intend to launch that in the autumn.”
He added: “Rather than the current 500 or so GPs that are being targeted for international recruitment . . . it probably needs to be four times more than that, from international sources — [from the] rest of the EU and possibly New Zealand and Australia.”
The total number of full time-equivalent GPs dropped from 34,914 in March 2016 to 34,372 in March this year, according to figures from NHS Digital.
Doctors’ representatives raised concerns about the long-term viability of overseas recruitment, given uncertainty over the status of EU nationals in the UK after Brexit.
The British Medical Association called the measure “a sticking plaster”.
Dr Richard Vautrey, acting chairman of the BMA GP committee, said: “Overseas doctors have for decades provided a valuable contribution to the NHS, especially in general practice where they have a strong track record of providing first-class patient care.
“However, this announcement is yet another clear admission of failure from the government, which is effectively conceding it cannot meet its own target of recruiting 5,000 extra GPs without an emergency draft of doctors from abroad.”
He called for a long-term solution to address workload pressures on GPs, which he said were putting students off choosing general practice as a career.
Professor Helen Stokes-Lampard, chairwoman of the Royal College of GPs, said: “Workload in general practice is escalating — it has risen 16 per cent over the last seven years — yet investment in our service has declined and we are desperately short of GPs and nurses.
“It is imperative that we do everything possible to address this, including recruiting more GPs, retaining existing ones, and making it easier for trained GPs to return to practice after a career break.”
She welcomed the extension of overseas recruitment, and called for “the position of EU GPs already working in UK general practice to be safeguarded beyond doubt as part of Brexit negotiations”.
Also, there is the unintended consequence of limiting pension amounts which many full-time (mostly male) doctors are endanger of breaching. This is resulting in them (and many higher paid public service workers, e.g. head teachers) taking early retirement.
Additionally, no real account has been taken of the large number of female GPs who (like my daughter) chose to jobshare so they can accommodate family life. It will not be long before GPs (like primary school teaching), will be an overwhelmingly female profession. There is a lot to be celebrated in rise in the number of female doctors over the last 25 – 30 years, but the nation needs to account for the different life work patterns when planning the workforce.
The NHS occupies the most curious and inconsistent of places in our national psyche. On the one hand, we seem permanently concerned that it is on the brink of collapse, that it is chronically underfunded and that staff morale is on the floor. On the other, our unusual approach to healthcare provision is frequently heralded as Britain’s greatest postwar achievement and even as the very encapsulation of the underlying values of the United Kingdom.
Those who see it as being worthy of passionate flag waving will be heartened by the most recent analysis of different healthcare systems in 11 of the world’s richest countries. According to the Commonwealth Fund, a US think tank, we come right at the top of the list, with Norway, Switzerland and Canada trailing in our wake.
Jeremy Hunt, the health secretary, could not contain his glee. This report meant that “the NHS has again showed why it is the single thing that makes us most proud to be British,” he fawned. In fairness to Mr Hunt, he was not castigated for absurd hyperbole. On the contrary, his view probably represents mainstream opinion throughout the land……
….Underpinning such widespread support for the NHS is the understandable desire to ensure every single person is guaranteed to receive a good standard of healthcare, irrespective of their means. But virtually every developed country achieves this without seeing the need for the state to actually run and control the healthcare system from top to bottom. A standard model would be an insurance-based system where those of limited means have their premiums subsidised, or even paid for entirely, by the government. When illness strikes, patients elsewhere can more readily choose between an array of different providers, with this competitive dynamism encouraging innovation and efficiency. In Singapore, for example, a system of personal savings accounts doesn’t produce obviously better outcomes than we get here, but it manages to do so at about half the cost.
Too often, any criticism of the NHS is seen as an attack on universal health provision or even on healthcare itself. The British debate about improving healthcare is stymied by an inability to detach a key moral principle (that everyone should be able to be treated irrespective of their means) from a more prosaic and technical discussion about how best to achieve this. Our failure to consider those two issues separately is useful for those who benefit from using the NHS as a political football, but is not good news for those of us whose primary interest is staying alive.
Mark Littlewood is director-general of the Institute of Economic Affairs. Twitter: @MarkJLittlewood
The same is true of the other regions. Deliberate rationing by undercapacity…
The Royal College of GPs has accused the Scottish government of “long-standing underfunding” of GP practices.
It has also criticised the “confusion” surrounding £500m of future spending commitments.
The comments come in a written submission to Holyrood’s Health and Sport Committee.
The Scottish government said it had already committed to investing “a further £500m in primary care by the end of this parliament”.
The Royal College of GPs (RSCP) called on the Scottish government to say exactly how much it would spend on general practice in the next four years.
It follows a statement by Health Secretary Shona Robison after the government announced that its share of health spending would be increased to 11% of the overall health budget by 2021.
Ms Robison said: “This forms the first stage of the Scottish government’s commitment to provide an extra £250m in direct support of general practice per year by 2021 – increasing the overall investment in primary care by £500m.”
The RCGP said Scotland “does not yet have understanding of what ‘in direct support’ may mean and the point has been raised with Scottish government that the term is too broad and lacks sufficient clarity”.
It added: “General practice is in severe need of a clear, positive future, illustrated by adequate governmental investment, if it is to attract sufficient numbers of medical graduates to general practice specialty training.
“If the long-standing underfunding and confusion that we are currently experiencing is to continue, we will keep witnessing a considerable number of general practices closing and transferring the running of their practices to Health Boards due to insufficient resource through which to remain solvent.
“Patients will continue to be found queuing outside practices for the uncertain opportunity merely to register with a GP. It is a major deficit to bear such long-standing underfunding and confusion.”
Responding to the RCGP’s submission, a Scottish government spokesman said: “As the First Minister announced last year, a further £500m will be invested in primary care by the end of this parliament.
“This spending increase in primary care, to 11% of the frontline NHS budget, will support the development of a multi-disciplinary approach, with increased staffing as well as investment in GP services and health centres.
“Health Secretary Shona Robison recently set out that £250m of this new investment will be in direct support of general practice, helping to transform the way services are delivered in the community – an approach that was agreed with the British Medical Association.
“In this financial year, over £71m of that funding is to support general practice by improving recruitment and retention, reducing workload, developing new ways of delivering services and covering pay and expenses.”
‘Reneging on promise’
Scottish Labour said the RCGP’s comments were “absolutely damning”.
The party’s health spokesman Anas Sarwar said: “Nicola Sturgeon has promised to boost the proportion of spending on GPs and it now appears she is going to renege on that promise.
“The importance of GP surgeries cannot be stressed enough. Particularly as we face an ageing population, with people living longer, primary care will only become more and more important.
“The reality is that under the SNP our health service is not prepared for this.
“We would do things differently. Labour’s government-in-waiting in Westminster would hugely increase the money available to our NHS as part of our plan to create a society that works for the many, not the few.”
‘Doctors are furious’
Scottish Conservative health spokesman Miles Briggs branded the government’s spending plans “a funding con”.
He said: “Nicola Sturgeon happily stood with GPs and backed their campaign for an extra £500m to be directly invested in general practice.
“Now this has been cut in half, and the SNP is offering some waffle about the money being spent more generally.
“It’s no wonder doctors are furious about this deception.
“The nationalists were happy to lap up the support of GPs when this commitment was made, but now seem to have completely u-turned on that promise.”
If you have a stroke on your way to the hereafter, your life expectancy is short, demand for services is high, and nobody listens to you, even if you can be understood. Dumped is the right political word. Congratulations to the reporter on his understatement however, The real word, especially with regard to intensive physiotherapy, is abandoned. Dead patients don’t vote, and those near death don’t appear to count. Commissioners have a perverse incentive to save money, richer areas can have more physio as more patients go privately, and the post-coded, covert rationing lottery continues..
Sufferers feel abandoned after leaving hospital and face waiting up to a year for the right treatment — or paying for it themselves
Stroke survivors are being left to languish at home with a “shocking” lack of support. Many say they feel abandoned by the NHS.
Juliet Bouverie, chief executive of the Stroke Association, said a new national plan was required to help the 1.2m stroke survivors in the UK. Some have to wait up to 12 months for psychological help.
“As a stroke survivor, your life and the life of your family is turned upside down,” she said. “Many stroke survivors say they feel abandoned, as if they have dropped off a cliff. The provision in some areas is shocking.”
About 100,000 people suffer a stroke every year in the UK; it is one of the country’s leading causes of death.
Andrew Marr, the broadcaster and journalist, who suffered a stroke in January 2013, said better support for stroke survivors — many of whom are of working age — could help them return more quickly to employment. He was back at work within six months, but largely because he paid for additional physiotherapy.
Stroke survivors can wait up to four months for speech therapy and up to a year for psychological support, according to data from the Royal College of Physicians. Stroke survivors say there is insufficient physiotherapy, a treatment which would ensure the best recovery.
A stroke strategy, launched in 2007, outlined a 10-year plan to overhaul stroke services and has seen significant improvement in acute treatment. The Stroke Association is calling for a new action plan to build on improvements and outline a new strategy for the rehabilitation of stroke victims.
Nathan Ridgard, 40, a self-employed businessman and a father-of-two from Harrogate, North Yorkshire, suffered a stroke on New Year’s Eve 2012. After being discharged from hospital, he said he was given some leaflets by the NHS on coping with a stroke, but struggled to read them because of his poor vision.
“I just felt I had been dumped out in the world,” he said. He received some NHS physiotherapy, but also paid for private sessions to supplement them. He has since made a good recovery.
Professor Tony Rudd, National Clinical Director for stroke at NHS England, said: “The quality of care and survival rates for stroke are now at record highs. We are working with the Royal College of Physicians and others local health service leaders to improve rehabilitation care for everyone who suffers a stroke.”
An endangered species? You may be lucky to find a GP soon… It will be better in the cities as they have the best schools, and most of the part time, and predominantly female, GPs come from suburban schools. The current situation cannot be solved quickly, and any sensible professional would never have got to this situation. Therefore they should not be expected to find a short term way forward. Meanwhile the Guardian reports: Record number of GP closures force 265,000 to find new doctors … It’s going to get worse.. and part of the problem is the belittling of GPs in Hospitals, and the lack of exposure medical students get to GP. Access and waiting times are both threatened, even for GPs
More than 200 GP practices across England have closed or merged in the last year.
Data from NHS Digital reveals that while just eight practices opened, 202 closed or merged. Practices were affected in all regions, but the north of England experienced the most change, with more than 60 closing or merging, while more than 50 closed or merged in the South East. The Midlands and the east of England had the most new surgeries.
Last year, NHS England announced a £500 million “turnaround package’“ to help struggling surgeries. NHS England data shows that between last summer and this, the same time period covered by the 202 closures and mergers, more patients became registered with GPs across the entire country. Taking into account that some patients may register with more than one GP, 58,492,541 patients were registered with a GP on July 1 this year, up from 57,744,814 the year before.
Helen Stokes-Lampard, chairwoman of the Royal College of GPs, said: “When practices are being forced to close because GPs and their teams can no longer cope with ever-growing patient demand without the necessary funding and resources, it’s a huge problem.” Dr Richard Vautrey, acting chairman of the British Medical Association’s GPs committee, said: “With over 200 practices closed or merged in the last year and many more struggling to manage their workload pressures, it is time for government and NHS England to step up their efforts to resolve this crisis before even more patients lose their much loved local GP service.”
In Wales the BMA – Welsh General Practitioners Committee (GPCW) has not been listened to for years. BMA in Wales wants faster action on GP ‘crisis’ – BBC News and Hywel Dda is one of the worst (and most rural) areas in Wales.
SCOTLAND’S GP crisis has deepened with one-in-three practices reporting a vacancy, the British Medical Association claims.
Last year the BMA found that almost a fifth of practices surveyed had at least one vacancy for a GP but the figure has since risen from 17 to 28 per cent.
The shock figures follow the closure of a rural GP clinic. Glencairn Medical Practice shut the doors of its Fenwick premises in East Ayrshire on Friday….
As I live in an area of the nation with one of the most infected reservoirs polluted with Blue-Green Algae (BGA) I feel it is important to publicise this research. Clusters can occur purely by chance, but there is a real need for a prospective study. Whether this is the cause or not, the cautionary principle should ensure that the infestation is treated as a pollution, and the NVZ (Nitrate Vulnerable Zone) should be enforced in the surrounding area. If you see BGA, especially in drinking water, it should be reported as a pollution, (0800 807065)
Detection of Cyanotoxins, β-N-methylamino-l-alanine and Microcystins, from a Lake Surrounded by Cases of Amyotrophic Lateral Sclerosis
A cluster of amyotrophic lateral sclerosis (ALS) has been previously described to border Lake Mascoma in Enfield, NH, with an incidence of ALS approximating 25 times expected. We hypothesize a possible association with cyanobacterial blooms that can produce β-N-methylamino-l-alanine (BMAA), a neurotoxic amino acid implicated as a possible cause of ALS/PDC in Guam. Muscle, liver, and brain tissue samples from a Lake Mascoma carp, as well as filtered aerosol samples, were analyzed for microcystins (MC), free and protein-bound BMAA, and the BMAA isomers 2,4-diaminobutyric acid (DAB) and N-(2-aminoethyl)glycine (AEG). In carp brain, BMAA and DAB concentrations were 0.043 μg/g ± 0.02 SD and 0.01 μg/g ± 0.002 SD respectively. In carp liver and muscle, the BMAA concentrations were 1.28 μg/g and 1.27 μg/g respectively, and DAB was not detected. BMAA was detected in the air filters, as were the isomers DAB and AEG. These results demonstrate that a putative cause for ALS, BMAA, exists in an environment that has a documented cluster of ALS. Although cause and effect have not been demonstrated, our observations and measurements strengthen the association.
It is probable that one or more environmental toxins contribute to the etiology of sporadic Amyotrophic Lateral Sclerosis (ALS), most likely interacting with underlying genetic susceptibility factors [1,2]. A neurotoxin produced by cyanobacteria, β-N-methylamino-l-alanine (BMAA) has been implicated as a potential environmental risk factor for ALS [3,4,5]. Cyanobacteria are ubiquitous throughout all ecosystems, most commonly in marine and freshwater environments  and are well-known to produce toxins that have human health implications [7,8,9]……..
The cyanobacterial neurotoxin BMAA has been implicated as a possible environmental risk factor or causative agent for ALS/PDC on Guam. We have demonstrated the presence of BMAA in the one sampling of the aquatic food web and in aerosol samples from a lake adjacent to an area of previously documented high ALS incidence. Further studies are needed to confirm the route of toxin exposure and mechanism of pathogenesis.