Category Archives: Patient representatives

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: 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”.

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.”

Reflections on the BMA conference in Bournemouth. A complete lack of trust..

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ARM 2017 in Bournemouth

The annual representative meeting (ARM) is the BMA’s main policy-making body. Around 500 doctors from across the profession and the UK gather to consider and debate key matters of interest to the medical profession.

I have never been to a BMA conference before. his conference from 25-19th June was an eye opener. The volume of business, and the number of people was daunting. Agenda items ranged from the political to the clinical. and some of us thought some issues would be best addressed by politicians. Throughout the meeting there was a complete lack of trust by doctors of government, dishonesty, and denial by politicians and administrators, and resulting anger and resentment in the body politic. This is spreading beyond the profession and the unrest following the Grenfell tower will be as nothing to the unrest as the health safety net is seen to fail.

BMA council chair Mark Porter – opening speech  – Health Service running on fumes

STPs(Stick Toffee Puddings , or Slash Trash and Privatise

Agenda Items on Monday of which I as speaking at 1:34 into the meeting

Dr Roger Burns speaks up abut West Wales. ( in response to Motion 16 (I):

Recognises that greater medical involvement in the design and planning of health care is crucial in ensuring that improved patient services are properly designed and effectively implemented.

There were plenty of retired members present, of whom I am one. It looks as if the retired members are trusted to represent their younger and busier colleagues. What is need is a way to vote from a distance. Members need to log into the website and watch a webcam and be prepared to vote at an instant. This would allow members to check in and relate to any particular motion but ignore others.

There was a couple of motions with the implication of rationing, but without mentioning the word itself:

Motion 12 (v) “Calls for government and NHS lead bodies to have an open dialogue with the public and patients about what services the NHS should provide for the funding available, and what services should no longer be funded by the NHS.

New attendees need to be aware that they need a speedy induction if they are to take advantage of the opportunity to speak. New conference members, and those who vote against a motion are given preference. I spoke out about the reconfiguration of Wales Health Trusts. NHSreality is in favour of one NHS trust for 3 million people, and this would at least endure choice within Wales. I spoke against the motion on the grounds that it failed to mention rationing, and the need for the politicians to get on board with this concept before we can make sense of the health service, and bring the hearts and minds of the doctors on board. Sometimes “hard truths” need to be said. Napoleon did this with the French after their revolution. By offering to bring order he took away a little liberty. Lack of choice is a loss of liberty, but it may be worth it if standards of treatment for important and expensive problems rise.

All local BMA groups need to plan ahead of the ARM to present notices of motion. Clinical and social meetings are also needed, and could be combined with politics.. My suggestions to be considered for the future include:

Wales residents should be given choices within Wales. If this can only be facilitated by one Health Trust then we support this proposal.

All Wales staff should be offered exit interviews by the BMA, and if they wish, in conjunction with other organisations such as the Nurses and Midwives, and other professions. Since no credence would be given to a summarised internal HR report, external consultants should be charged with this task.

In West Wales infrastructure needs to be improved, especially for travel, but also to replace old buildings and plant.

Medical Publications should always inform the reader if the paper was rejected by another publisher. The on line information should then reveal why rejection occurred.

All Wales BMA members should be offered the option of group/mutual medical insurance

and for local debate: A decision not to build a new hospital at Whitland / Narberth in 1996 is to be regretted.

Henry Bodkin in the Telegraph 27th June: Doctors call for abortion on demand as BMA votes to decriminalise terminations for first time ever 

Ann Furedi comments for BPAS: Why UK abortion laws should be scrapped – they are 50 years out of date 

Pharmforum comments on STPs on June 28th: Millions will be affected by STP health service cuts, say doctors

Hunt stayed silent over 700,000 lost letters to patients (The Telegraph)

Crowdfunding of Wheelchairs

UK falls behind in International league of doctor numbers (BMJ)

Government using GPs as scapegoats instead of taking responsibility for crisis in NHS

Margaret McCartney: Health inequality has to be political BMJ 2017;357:j2978


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BMA annual meeting: GPs working at unsafe levels should issue “black alert”-style warnings, says BMA (Wales sees steep rise in “at risk” surgeries.

Frances Gibb in the Times 27th June: Medical negligence payouts ‘unaffordable’

Doctors call for national rules on OTC prescribing (BMJ 25th March)

BBC2: Hospital – How do you cost life? 

Kat Lay in the Times 12th June: NHS blocks drug to help babies with spinal muscular atrophy

London commissioning group plans to restrict cataract surgery

Oliver \moody on 26th June: NHS urged to find money for cystic fibrosis drug

Kat Lay: ‘Overworked’ GPs demand to close their surgery doors

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Why not implement no-fault compensation? Because it needs a longer term perspective and a PR system to get it through.

Frances Gibb reports in The Times 23rd June 2017: Medical negligence payouts ‘unaffordable’

Reforms to curb the soaring costs of medical negligence, which could see taxpayers paying out £2.6 billion a year by 2022, must go ahead, a report has urged.
The NHS spent £1.5 billion on clinical negligence claims last year, enough to train more than 6,500 doctors, the Medical Protection Society said. The not-for-profit organisation , which supports 300,000 healthcare professionals worldwide, is calling for a package of legal reforms that would strike a balance between compensation that is reasonable but also affordable.
Its proposals include a cap on future care costs which would be paid on a tariff to be agreed by an expert working party. It also wants to use national average weekly earnings to calculate damages awarded, to avoid unfairness between high and low-income earners.

and the comments are good as well. In Wales the amount set aside for future litigation/compensation is more than one year’s budget. Why not implement no-fault compensation scheme? Because it needs a longer term perspective and a PR system to get it through. Apologies would then be like confetti..

Image result for confetti cartoonand that’s not to mention apologies from our masters re both contract and staffing levels:

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Scotland (and I hope Wales will follow) has announced legislation to protect doctors if and when they apologise. Doctors in Scotland get legal protection when apologising, explains MDU

Doctors in Scotland are being given legal protection when apologising to patients, the Medical Defence Union (MDU), explained today.

The Apologies (Scotland) Act 2016, the relevant part of which comes into force on 19 June 2017, makes it clear that an apology (outside of legal proceedings) is not an admission of liability. In the new Act, an apology is defined as:

‘…any statement made by or on behalf of a person which indicates that the person is sorry about, or regrets, an act, omission or outcome and includes any part of the statement which contains an undertaking to look at the circumstances giving rise to the act, omission or outcome with a view to preventing a recurrence.’

Mr Jerard Ross, MDU medico-legal adviser, said:

‘Saying sorry to a patient when something has gone wrong is the right thing to do and is an ethical duty for doctors. The Apologies (Scotland) Act provides further reassurance to doctors that apologising is not an admission of legal liability. In the MDU’s experience, a sincere and frank apology and explanation can help restore a patient’s confidence in their doctor following an error and help to rebuild trust. This is important for a patient’s future healthcare and can help to avoid a complaint or litigation.’

Doctors have a professional duty of candour, set out in the General Medical Council’s Good medical practice which states: ‘You must be open and honest with patients if things go wrong. If a patient under your care has suffered harm or distress you should put matters right (if that is possible), offer an apology, explaining fully and promptly what has happened and the likely short-term and long-term effects.’

A legal duty of candour was also introduced for health and social care providers in Scotland under The Health (Tobacco, Nicotine etc. and Care) (Scotland) Act 2016 although it has yet to be brought into force by enabling legislation. It will mean that doctors and other health and social care staff in Scotland will have to inform patients and their families when a patient has, in the reasonable opinion of an uninvolved registered health professional, died or been unintentionally or unexpectedly mentally or physically harmed as a result of their care or treatment.

Although the Apologies Act does not apply to the legal duty of candour, the Health Act itself makes it clear that ‘an apology or other step taken in accordance with the Duty of Candour…does not of itself amount to admission of negligence or breach of a statutory duty’.

The GMC has published ethical guidance on the professional duty of candour which explains in more detail what constitutes an effective apology for healthcare professionals. This includes advice that apologies should not be formulaic and that the most appropriate team member, usually the lead clinician, should consider offering a personalised apology, rather than a general expression of regret.

In Wales the amount set aside for future litigation/compensation is more than one year’s budget.

David Williamson for Walesonline 30th Dec 2016 : More than £600m allocated to pay for clinical negligence and personal injury claims against the Welsh NHS in the future

In the last financial year £74.6m was paid out and £682m has been set aside for future payments

NHS faces ‘compensation time bomb’ as clinical negligence …  GP online25 Jul 2016

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BBC News28 Nov 2016


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Leimyoscarcoma treatment options unfair…. in west Wales where choice is anathema.

I do not mind if something/some service is denied to everyone in the UK paying into the same mutual. What I do not like to hear is when someone in my town and post code is denied a treatment which is available in London. The National Sarcoma centre is at the Marsden, and there is a National Sarcoma Service. Unfortunately, unbeknown to the citizens and taxpayers of Pembrokeshire, until they suffer from sarcoma, is that this service is not available to them. This is what NHSreality calls COVERT rationing because one is not aware of it in advance. Net result is that money is raised, and this one patient gets “private” care. What about all the others in Wales? Local exclusion would be all very well for high volume low cost treatments, (this is not allowed) but is patently unjust for low volume high cost treatments. (allowed under the current “rules of the game”) Will the trust respond by saying they feel this is reasonable rationing? No way. They will use the words exclusion, restriction or prioritisation to justify their position. As a trust in special measures ( bankrupt and getting worse) it is not surprising they wish to save money… and the treatment may be poor value for money but this shows how unfair the situation is for those in West Wales, and it is repeated across many specialities and treatments.

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BBC News reports today 23rd June 2017: Haverfordwest mum’s ‘roadblocks’ to SIRT cancer treatment

NHS Wales has been accused of “not being set up to deal with” certain types of cancer.

Anca Falconer, 36, from Pembrokeshire, was diagnosed with Leiomyosarcoma (LMS), a type of soft tissue sarcoma, just days after giving birth in 2010.

Her request for specialist treatment in England was refused.

The Welsh Health Specialised Services Committee said the success of Selective Internal Radiation Therapy (SIRT) “has not currently been established.”

Mrs Falconer, who lives in Haverfordwest, initially underwent extensive surgery and chemotherapy for her rare liver cancer, but it returned.

Her first request to the committee was rejected in 2013 on funding grounds, and her cancer consultant refused to submit another application, describing the efforts as being “futile”, and she was told she would have to find the money herself.

Fundraising efforts allowed her to receive the first round of SIRT, which involves injecting radioactive microbeads into the liver, at a cost of £10,000.

Mrs Falconer, who had been bedbound for about three months, said she felt transformed after the treatment.

“Within days I was able to stand up again. I can play with Mary and take her to school,” she said. “I had lost hope before.”

The second round of treatment costs £20,000 and is due by late August.

Mrs Falconer’s husband, Richard, 51, said NHS Wales was “not set up to deal with soft tissue sarcomas” with many of the specialist centres in England.

He added that he thought experts in Wales had “given up on his wife” four years ago and that she had received “nothing more than palliative care” and “roadblocks to all curative options that should have been on the table”.

Dr Sian Lewis, medical director for the Welsh Health Specialised Services Committee, said the “clinical effectiveness” of SIRT for the treatment of liver cancer “has not currently been established”.

She said it is only available to a limited number of patients in NHS England as part of a programme to assess its effectiveness.

The Welsh Government said NHS Wales will make a decision regarding the routine commissioning of SIRT when the results of the evaluation become available next year.

False hopes

Abertawe Bro Morgannwg University Health Board, which provided chemotherapy to Mrs Falconer, said if previous funding requests have been declined by the committee any subsequent submission has to contain “new clinical evidence”.

A statement from the health board said, while it could not comment on Mrs Falconer’s case, its “clinicians fully appreciate the distressing situation its patients are in”.

“It’s because of this they would never consider falsely getting a patient’s hopes up by resubmitting an already declined request when there is no new clinical evidence available.”

Hywel Dda University Health Board has also been asked to comment.

September 2016 – Mark Smith for Walesonline: Three Welsh health boards have been placed under additional Welsh Government scrutiny

Cardiff and Vale, ABMU and Hywel Dda are just one level short of ‘special measures’

Adrian O’Dowd in the BMJ 15th June 2017: Trusts boost ratings by engaging staff and including clinicians in management

Adrian Dowd in the BMJ 23rd June 2017 : The only way is up: the “special measures” trust that got back on its feet

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Read all about it: media coverage of NHS rationing. John Major: The NHS is about as safe with Tory Brexiteers as a hamster is with a phython..

Anna Charles of the The Kings fund policy research unit has published a paper on 16th February 2017: Read all about it: media coverage of NHS rationing

NHSreality has been trying to tell citizens that covert rationing is going to get worse, standards are going to fall, and since Brexit there will be national staff shortages. Many Health Services are delivered by private contract, or by charities. Budget cuts mean these suffer more than the “core” of long term health employees…. The Civil Unrest in London as a result of the poor fire safety rules for high rises will be nothing compared to the unrest as the average citizen realises their safety net has been holed – by neglect and denial.

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Tom Bulger on 20th June in the Liverpool Echo reports: Health boss slams Tory cuts as more than 20 city charities lose NHS cash

The Northampton Telegraph reports 21st June: Corby survey finds majority of people are unaware of planned NHS changes


Michael Buchanon for BBC News reports today: Ninth avoidable baby death at NHS trust

and BBC News reports (presumably with Michaels help): Reducing baby deaths and brain injuries during childbirth – shamed by an infant death rate which in Europe is only better than Malta, and worse than all other countries in Europe.

Katie Forster in the Independent 21st June reports: NHS leak reveals ‘shocking restrictions’ on care in London hospitals as part of secret cuts programme

Secret cost-cutting plans described as a “death knell” for the NHS will result in longer waiting times, rationing of care, job losses and ward closures at hospitals in London, a new leak has revealed.

Details of the proposals, part of a national savings drive designed to cap NHS spending, have been called “shocking restrictions on care quality and access for patients” by politicians.

North Central London is one of 14 regions across the country in which senior NHS managers have been told to make “difficult choices” to curb overspending.

A document leaked to The Guardian sets out how care at 10 hospital trusts in Camden, Islington, Haringey, Barnet and Enfield – including the Royal Free and Great Ormond Street children’s hospital – could be cut back.

These include job losses to reduce “admin costs”, increasing waiting times past the current 18-week limit, and the closure or downgrading of services, likely to put smaller hospitals such as North Middlesex Hospital in Enfield at risk, reported the newspaper.

The document is said to outline plans to plug a £183.1 deficit at the London trusts – singled out by health bodies NHS England and NHS Improvement as one of the most severe in the country.

But Jonathan Ashworth, Labour’s shadow health secretary, said the proposals, known as the “capped expenditure process”, would result in “a postcode lottery where healthcare varies depending on where you live”.

He said Theresa May’s “weak and unstable” Government has “huge questions to answer about this new NHS ‘capped expenditure process’”, which is “in reality a Tory NHS ‘hit-list’ drawn up in secrecy during the election campaign.”.

“It’s an absolute scandal that, whilst Parliament and the public were concentrating on the election campaign, this was being rushed through in secret, ready for immediate approval by ministers in the expectation of a Tory victory at the general election,” said Mr Ashworth.
“Now we learn detailed proposals for North London involve shocking restrictions on care quality and access for patients.”
Other ideas under consideration as part of the programme, which aims to ensure NHS spending meets budget targets for this year, include limiting the number of operations carried out by non-NHS providers to make sure funding stays within the health service, which could limit patients’ choice of providers.

NHS funding could also be withdrawn for new and recently-approved treatments and those considered “low value” – adding to the list of prescription items such as cough medicine and gluten-free food that patients were made to pay for earlier this year.

Doctors said the “sweeping cuts” would result in patients being denied treatment and increasing wait times that are already unacceptable. This is “far from safe and will only lead to poorer care in the future,” said Dr Mark Porter, Council Chair of the British Medical Association (BMA).

“The government must step up and finally act in the best interests of the NHS and its patients, rather than continuing to starve the health service of resource and patients of care,“ he said.

Louise Irvine, a GP who stood against Jeremy Hunt in his South West Surrey constituency at the general election, coming second with 20 per cent of the vote, previously told The Independent the “truly shocking” scale of the proposed cuts and closures represent a “death knell” for the founding values of the NHS.

Campaign group Keep Our NHS Public said there were “no surprises” in the revelations, but “plenty of horrors”.

“Their twisted plans – hatched largely in secret – are set to hurt people all over London, Jeremy Corbyn’s constituents included. How long are people going to put up with this double dose of secrecy and cuts? Is this what they voted for?”

The North and Central London consortium of NHS bodies said: “Health organisations across North London are working with NHS England and NHS Improvement to ensure we deliver safe and effective patient care within budget. This process is underway but has not reached any conclusions to date.”

John Major: The NHS is about as safe with Tory Brexiteers as a hamster is with a phython

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