BBC BLOGS - Fergus's Medical Files

Archives for July 2010

Echoes, but no repeat of the Bristol heart scandal

Fergus Walsh | 22:36 UK time, Thursday, 29 July 2010

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Echoes of the Bristol heart scandal are inevitable whenever there is an investigation into deaths of babies following heart surgery.

But although there are similarities, the failings at the John Radcliffe hospital in Oxford are nowhere near on the same scale of those at the Bristol Royal Infirmary.

In both cases the blame largely lay with systems rather than individuals - and there was a poor culture of reporting concerns.

But Bristol involved massive failures stretching over a decade. Twenty-nine babies died, and doctors were struck off for poor performance and misconduct.

At the John Radcliffe the problems centred on just one surgeon. Caner Salih raised concerns himself, and his competence is not in question. Action was taken - prompted by him - within three months of the first death. Mr Salih has now moved to Guy's and St Thomas' in London, which has put no restrictions on his practice.

The legacy of the Bristol scandal is that heart surgery is now the most regulated and monitored area of medicine. Death rates are published for each surgeon, which you can view online.

But the shortcomings at the John Radcliffe show that this new openness is not enough. Effective clinical leadership and teamwork are essential if lives are not to be put at risk.

Later this year a review of the 11 paediatric heart surgery units in England will issue a report recommending fewer, bigger units. Oxford, as the smallest unit in the country, was already top of the list for closure.

It was this fear of closure which encouraged the hospital to expand the unit. Whilst a business plan was put in place, Thursday's inquiry says there was no proper assessment of the clinical risks of expansion.

It is a sad irony the appointment of a new surgeon, intended to bolster the reputation of the unit, simply accelerated its closure.

New funding for cancer drugs

Fergus Walsh | 18:48 UK time, Tuesday, 27 July 2010

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pillsOver the years I have done many stories about why cancer survival in the UK lags behind that of other EU countries. One trip to a regional cancer centre in France in 2007 sticks in my mind. I met patients being treated with drugs that would have been denied them in Britain. French cancer specialists were appalled by my stories of NHS rationing and told me that the cost of a new drug was irrelevant - if it was shown to be effective, then it was funded.

Today the cancer tsar Professor Sir Mike Richards published a report which, unsurprisingly, showed the UK lagging behind many other developed countries in its use of new cancer drugs.

In response the government announced a £50 million fund to pay for new cancer drugs in England. Professor Richards thinks it will help thousands of patients. It is a stop-gap measure until next April when a Cancer Drugs Fund comes into place. France has had a central funding system for years, which picks up the cost of expensive new cancer drugs so that they don't skew local health budgets.

Interestingly, today's report did not look at the effect of greater or lower drug usage on outcomes, such as survival rates. Professor Richards was keen to stress this point:

"Early diagnosis is the main factor in cancer survival, followed by good surgery, radiotherapy and cancer drugs. A lot of these new cancer medicines extend life for a few months, but those extra months are vital for the patients and their families."

So drugs alone make up a small part of the cancer treatment jigsaw. In 2007, France also had 20% more radiotherapy machines than the UK, and 50% more doctors per head of population. I'd be interested to know if those proportions have changed.

Recent years have seen improvements in cancer treatment, and many new facilities. One example is the £200m cancer centre at Barts Hospital in London which is aiming for a high proportion of patients taking part in clinical trials.

And outcomes are improving. Earlier this month, Cancer Research UK published figures showing that patients with breast, bowel and ovarian cancer, are twice as likely to live for 10 years, compared with the 1970s.

So will the new funding for cancer drugs be sufficient? A figure of £200m a year had been mooted but today that was described as an "aspirational" figure but could not be guaranteed. The government also denied that the cancer fund will undermine the work of NICE, the National Institute for Health and Clinical Excellence. It assesses new cancer drugs and comes in for huge amounts of flak when it turns them down as too costly. But the effect of the new fund will be that clinicians will have greater freedom to prescribe drugs, even if NICE has said no.

Face transplants: Success abroad, but not yet in Britain

Fergus Walsh | 19:07 UK time, Monday, 26 July 2010

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OscarIt is five years since Isabelle Dinoire became the first person in the world to have a partial face transplant. That breakthrough inspired teams in the US, Spain and China to perform even more complex surgery. Last year, Connie Culp, left disfigured after being shot by her husband, had 80% of her face replaced by doctors in Ohio.

Then, in April this year, a team in Barcelona announced they had carried out the first full face transplant. That patient has now been named, simply as Oscar, to protect his identity, and he has appeared in public for the first time.

It must have taken great courage to face the world's TV cameras and photographers. Oscar's face is still very swollen and he can't completely close his mouth or eyes. But despite two bouts of acute transplant rejection, doctors say he is ready to be released from hospital.

Oscar's sister said his ambition was to lead a normal life; to be able to walk down the street without anyone looking at him. It is the same thing that Connie Culp and Isabelle Dinoire said after their surgery. Photographs of Dinoire taken just after surgery and then a year later show a significant improvement and suggest that ambition is realistic.

Isabelle DinoireBefore Isabelle Dinoire's operation, many thought face transplantation was a bad idea. There were doubts about the ethics and the practicalities. Recipients have to take immuno-suppressants, which can be life-shortening. But for patients like Dinoire, who lived a life in the shadows, rarely going outside, it was a price they felt was worth paying. There were fears too about the psychological impact of having someone else's face. Interviews with Dinoire suggest she has got used to living with her new face, although she still regards it as not her own.

Some years ago my own features were morphed with those of the leading transplant surgeon Peter Butler. The aim was to give an idea of what I might look like if I received his face in a transplant operation. It was done for a news story, but also to help give potential recipients and donor families an idea of how face transplantation might alter someone's appearance.

The end result was something that looked more like me than the surgeon, which was good news for the team at the Royal Free Hospital. It demonstrated that a person's face shape is largely determined by their underlying bone structure, rather than the skin envelope. Since then, the Royal Free team has used the animation as part of its assessment process in selecting patients.

But as yet no patient in the UK has had a face transplant. This is despite the efforts of Mr Butler, who is now professor of plastic and reconstructive surgery. He has been researching face transplants for 17 years, long before it became a reality elsewhere.

Professor Butler set up a charity, The Face Trust, to look at research into surgical treatments for patients with severe facial injuries. He and his team have ethical approval to carry out a full face transplant for a patient with severe burns.

A spokesman for the Face Trust told me that the team had been looking for donors for more than six months but had yet to find a match for any of their patients.

It seems only a matter of time before this innovative surgery is carried out in Britain. But for the moment, surgeons and patients here must continue to wait.


Inglis: 'Mercy killing' case adjourned

Fergus Walsh | 15:55 UK time, Wednesday, 21 July 2010

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FrancesInglis.jpgA surprise turn of events happened in Court 4 of the Royal Courts of Justice this morning.

The Lord Chief Justice and two fellow High Court judges were there to hear an application by Frances Inglis against her murder conviction. The judges were ready and the case was set down for the whole day. Ready too were the barristers and solicitors for the Crown and the defence.

The only person not ready was the applicant herself. A letter emerged yesterday in which Frances Inglis stated she wanted alternative counsel - effectively sacking her legal team.

Inglis had been found guilty in January of the murder and attempted murder of her brain-damaged son, Thomas. She injected him with heroin because she said she wanted to release him from a "living hell".

Speaking from behind the bars of the dock today, Inglis told Lord Judge, "I don't feel I'll get a fair hearing if it goes ahead now. There are a lot of issues I'd like you to consider regarding the trial and it would be sad if that was denied."

The judges agreed to adjourn her application for permission to appeal against conviction, but no new court date was set.

Lord Judge asked who she wanted to represent her. Inglis replied that it was an "elderly" barrister who was well-known at the Old Bailey and whom she'd met two years before.

Lord Judge pointed out that if the barrister could not be located or was unable to take the case, then leading counsel would be appointed on her behalf.

The judges, when they eventually hear the application, will have the chance to review the evidence and the punishment.

Although Inglis was given a mandatory life sentence, Judge Brian Barker imposed a minimum term of nine years. This follows guidelines from the then Lord Chief Justice Lord Woolf in 2002 concerning the tariff for murder.

These state that for murders with mitigating circumstances, such as where the offender believes the murder is an "act of mercy", minimum terms of eight or nine years are "justified".

So-called "mercy-killings" do not automatically lead to such a lengthy sentence. In 2007 Frank Lund was given a minimum term of three years in jail after being found guilty of killing his wife Patricia. He suffocated her with a plastic bag and pillow.

But there appear to be significant differences between the two cases. Patricia Lund had been determined to kill herself. She wrote suicide notes on the day of her death before taking huge numbers of painkillers. Frank Lund only reluctantly agreed to help his wife end her life. The sentencing judge, Mr Justice Silber told Lund [36Kb PDF]: "If you had not agreed to suffocate your wife, she would have committed suicide very shortly afterwards." Furthermore, medical evidence showed that the overdose would have killed her, without medical intervention.

By contrast, Thomas Inglis had been in a coma since falling from an ambulance in 2007 and suffering serious brain damage. Unlike Patricia Lund he was unable to express his own views.

At Frances Inglis's trial, evidence was given that she had refused to believe doctors who said Thomas was showing signs of recovery. Inglis injected her son with heroin, but he survived. A year later, when she was on bail for his attempted murder, she barricaded herself into his room and again injected him with heroin. This time, she succeeded in killing him.

Judge Barker described Inglis as a "devoted mother". But he said, "You cannot take the law into your own hands and you cannot take away life, however compelling you think the reason."

Both Inglis and Lund were strongly supported by their families. Frances Inglis's two surviving sons were in court today. After her trial, her eldest son Alex called for "mercy killings" to be dealt with under different rules to murder.

Euthanasia: "Mercy killing" law to be tested

Fergus Walsh | 20:30 UK time, Monday, 19 July 2010

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Tony.Nicklinson.jpgThe case of Tony Nicklinson will re-open the debate on assisted dying and so-called "mercy killing". He has locked-in syndrome, following a stroke. Unable to talk, he communicates by blinking or nodding his head. He also has a specially adapted computer with a push-button control.

Mr Nicklinson is not able to travel, but I met his wife Jane and daughters Beth and Lauren at their solicitors in London. Mrs Nicklinson read out a statement that he had dictated to her:

"I am a 56 year old man who suffered a catastrophic stroke in June 2005 whilst on a business trip to Athens, Greece. It left me paralysed below the neck and unable to speak. I need help in almost every aspect of my life. I cannot scratch if I itch. I cannot pick my nose if it is blocked and I can only eat if I am fed like a baby - only I won't grow out of it, unlike a baby. I have no privacy or dignity left. I am washed, dressed and put to bed by carers who are, after all, still strangers. I am fed up with my life and don't want to spend the next 20 years or so like this. Am I grateful that the Athens doctors saved my life? No I am not. If I had my time again, and knew then what I know now, I would have not called the ambulance but let nature take its course."

Mr Nicklinson wants his wife to be allowed to inject him with a lethal drugs dose without the fear of her being prosecuted for murder or manslaughter. As the law stands, that seems a vain hope because actively taking a life, even with consent, has always been treated as a crime, leading to a jury trial.

The Director of Public Prosecutions recently issued new guidance on assisted suicide, but made it clear it did not apply to cases where someone directly ended another's life, sometimes called euthanasia or "mercy killing".

The guidance on assisted dying followed a victory by campaigner Debbie Purdy, who wanted to know if her husband would face charges if he helped her travel abroad to die. The DPP said each case would be examined on its merits, but if the victim had a settled wish to die and the person assisting the suicide was acting out of compassion, then it might be against the public interest to prosecute.

That's the reason why no relatives have been prosecuted after travelling to Switzerland to support loved ones dying with help of the Dignitas group.

However, when it comes to euthanasia or "mercy killing" it is down to juries to decide the fate of the accused. In two cases earlier this year, juries came to different conclusions.

Kay Gilderdale, who helped her disabled daughter to die, was cleared of attempted murder. The court heard that her daughter Lynn had a settled wish to die and had attempted suicide.

But another mother, Frances Inglis, was convicted of murder and given a minimum term of nine years after injecting her brain-damaged son with a lethal dose of heroin. Her son Thomas was unable to communicate his wishes.

In this latest case, the DPP is probably unlikely to want to further clarify the law. He did so in the Purdy case only after defeat in the House of Lords. If, as likely, he argues that the law on murder needs no further explanation, then the legal team representing the Nicklinsons will seek to make a claim under the European Convention on Human Rights.

They will contend that the law of murder in England and Wales, which prohibits all intentional killing regardless of the victim's wishes, constitutes an interference with the right to respect for private life under article 8 of the Convention.

Tony.Nicklinson.before.stroke.jpgThe Nicklinson case has strong similarities with that of Diane Pretty, who had motor neurone disease. She asked the DPP to grant immunity from prosecution to her husband if he assisted her suicide. She died of natural causes in 2002, just a month after judges in Strasbourg ruled against her. Her legal battle had lasted for several years.

The case of Tony Nicklinson will inevitably provoke strong opinions both in favour and against assisted dying, and it may also take a long time to work its way through the courts.

update: July 21st 12:50 I contacted the solicitors Bindmans, who represent the Nicklinsons. I asked them to draw the family's attention to the comments regarding technology that might aid Tony Nicklinson in communicating. Bindmans have sent me an email saying this:

Jane has asked me to thank you for the blog. She said: "We actually have one of these computers on order. We had a fight to get funding but won in the end. It will be an improvement no doubt."


Childbirth: Risks and reality

Fergus Walsh | 09:00 UK time, Friday, 16 July 2010

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I have no doubt some mums-to-be will be unnerved by research which suggests that giving birth out of office hours is more risky than during the day. According to a study of more than a million Scottish births, babies born at night or at the weekend have a small additional risk of dying.

The deaths happened among otherwise healthy babies who were starved of oxygen because of some major complication during labour or delivery. It's worth stressing such deaths are unusual - about four in every 10,000 births. Across the UK as a whole, the additional level of risk would be equivalent to about 50-100 infant deaths per year.

The researchers did not have information on the exact care being provided so had to speculate as to why it's safer to give birth Monday to Friday between 9am-5pm. There will inevitably be more specialist staff on duty during weekdays. The researchers suggest that improved access to operating theatres, senior clinicians and higher levels of staffing round the clock could save lives.

It's worth setting such risks in context. The past 30 years has seen a steady decline in mortality rates both at birth and in the first year of life. For example, between 1980 and 2008, neonatal mortality in England and Wales fell by 58%.

There should be no room for complacency. A study earlier this year in the Lancet suggested that although maternal mortality in the UK remains low - 8.2 deaths per 100,000 live births - it is significantly higher than countries like Italy, Australia and Sweden.

Stem cells: Keep the faith

Fergus Walsh | 00:00 UK time, Monday, 12 July 2010

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Stem cellStem cell research gets a lot of media interest.

There has been much talk about stem cell therapies revolutionising medicine. This is because they have the ability to turn into some, or all, of the 200 or more different cell types in the body.

It would be easy for a casual observer to say this area has been hyped.

The Superman actor Christopher Reeve was among many high-profile supporters of research involving human embryonic stem cells.

Last year I met spinal injury patients in California who were keen to be part of the first trial.

But despite years of planning and tens of millions of dollars of investment by the Californian biotech firm Geron, it has yet to begin. After being approved by the Food and Drug Administration, it was put on indefinite hold last year.

But a broader look at the field of stem cell research shows that it is already delivering much-anticipated breakthroughs. At least that is the view of Professor David Warburton of the Saban Research Institute at Los Angeles Children's Hospital.

David Warburton

He will be a speaker at the UK National Stem Cell Network annual conference, which begins today in Nottingham.

Professor Warburton, who was brought up in London, has been working in the US for 30 years. He is keen not to over-sell stem cells, but nonetheless is confident that they will change the landscape of medicine.

"In 20 years we will have stem cells banks like pharmacies. You will get a specific diagnosis and take a specific type of stem cells."

He said the acceleration in DNA sequencing means that, at some point we will all be able to carry round our genome details on a key fob. Professor Warburton said the decision last year of the Obama administration to overturn many of the Bush restrictions on stem cell funding, had had a "liberalising effect".

Professor Warburton's main area of interest is in the use of stem cells derived from amniotic fluid. These are donated by pregnant women undergoing amniocentesis.

"One of the side-effects of the Bush restrictions was to encourage scientists to look at less controversial sources of stem cells", he said. "There are no ethical objections to using amniotic fluid derived stem cells." He is hoping to begin safety trials in humans targeting kidney disease - specifically the inherited condition Alport syndrome.

Organ regeneration using stem cells has already had some spectacular success, especially with hollow organs like the windpipe and bladder.

In 2008, surgeons in Spain carried out the world's first tissue-engineered whole organ transplant. They stripped the cells from a donor organ and re-populated them with the patient's own stem cells.

Earlier this year, a 10-year-old British boy became the first child to undergo a stem cell organ transplant.

Last month, scientists in the United States said they had grown working liver grafts in the laboratory. Although this was early research involving rats, it was significant because the liver is a much more complex organ than hollow organs like the windpipe.

The potential advantage of growing new organs using a patient's own stem cells is that they may not need to take anti-rejection drugs, which can significantly reduce life expectancy.

There are many other trials - especially in the field of heart damage - which are yielding promising results. Patients are understandably impatient for therapies now, rather than later. But the message to them from the stem cell conference in Nottingham will be - keep the faith.

Biobank: Tracking the health of a generation

Fergus Walsh | 18:07 UK time, Tuesday, 6 July 2010

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cardiovascular.226_300.jpgYou might well ask whether there is anything left to test in my body. Having had all my genes sequenced, been given prototype vaccines, and had my brain scanned - twice - I have now taken part in the UK Biobank trial.

This involved three hours of tests and ended with me giving seven blood samples - fortunately this involved only one injection. There were also urine and saliva samples to donate. My genetic material was then shipped up to Stockport, to the Biobank freezer where it will be stored along with samples from all the 500,000 volunteers across the UK. I'll say more about that freezer later.

The UK Biobank scientists will track the health of this huge group of Britons for the next 30 years. With the help of NHS records, they will record every serious illness and death.

All volunteers undergo an array of physical checks. There are the obvious ones like height, weight, waist-to-hip ratio, eyesight, lung function, and hearing. And the less obvious: height while seated, heel density, eye pressure and grip strength.

Then, using a touch screen computer there were hundreds of questions to answer. Most were fairly straightforward and dealt with diet, exercise and lifestyle. I tried to work out, as I went along, what future health problems they were trying to anticipate. For example, there were memory tests to complete. If those who do badly at remembering pairs of cards go on to develop dementia in greater numbers, then it might point the way to early tests for dementia risk. There were lots of questions about diet and exercise which could cover an array of future illnesses.

Some subjects were highly personal: how many sexual partners have you had? Another was downright baffling: do you frequently break the speed limit on the motorway? This, apparently, is designed to show if you are a risk-taker. There was an option to skip any question that you didn't want to answer.

With all that genetic, physical and lifestyle data, scientists should be able to get a far better understanding of why some people fall ill and others don't. They will have a huge storehouse of genetic material to compare, which they will be able to cross-reference against the results of physical checks. The hope is that it will lead to better and earlier diagnosis of disease

And the volunteers will be invited to take part in further health checks and surveys in the future.

The UK Biobank will really come into its own in 30 years time, when many of the 500,000 volunteers have developed diseases or died. By 2040 the research will be in the hand of scientists who are probably now at primary school. It will be them and their children who will benefit the most from the project.

It is surely an admirable and unselfish gesture of half a million adults in Briton to agree to undergo all those tests, giving up their genetic secrets, in the knowledge that it is for the benefit of future generations, rather than themselves.

Finally, back to that freezer. It's got to be pretty big to hold all those samples. I'm told it's the biggest freezer of its kind in Europe - I reckon about the size of two medium family houses. I went inside because, being a TV correspondent, that's what you do. The freezer in your kitchen is set at minus 18C, which is fine for ice-cream and peas. The trays inside the Biobank freezer are down to minus 80C. After 10 minutes of filming and taking photographs, my ears were getting frost-bite, so we left before others bit of my genetic material were left behind.
biobank_freezer.595.jpg

Pain: Reasons to be cheerful

Fergus Walsh | 13:15 UK time, Tuesday, 6 July 2010

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Robert_Mason_and_his_wife.jpgI get to meet lots of remarkable people: pioneering scientists, dedicated doctors and patients with amazing stories to tell. Robert Mason, who is the first person in Britain to be fitted with a motion sensor neurostimulator, is a pretty inspiring chap.

Eight years ago he was removing the gearbox from a baling machine and badly damaged his lower back. It left him with excruciating pain. Even the most powerful painkillers did not help.

Despite that, he is one of the most optimistic and positive people I've met. So I was delighted to see that his device, Medtronic's RestoreSensor, is working so well. This morning he told me he had got four and a half hours unbroken sleep last night - the longest he has had since his accident.

Neurostimulators are not new, but Robert's device automatically alters the amount of electrical impulses it emits, based on his position. This is important because, like most patients with chronic lower back and leg pain, he needs different levels of pain relief for different positions.

Prior to being fitted with the device, Robert says he never got more than two and a half hours' sleep, and that was in bursts of 20 minutes.

The combination of sleep deprivation and constant pain would leave most of us in a pretty desperate state. Robert is an extreme case, but it is thought about one in five adults has chronic pain. According to the British Pain Society, at least 60% of that is due to back and neck problems. Many people suffer in silence. A pan-European survey found that one in five chronic-pain sufferers had lost a job as a result of pain and the same proportion had been diagnosed with depression.

Robert Mason puts his positive outlook down to his family and living somewhere "nice and green". Although he is still on crutches, Robert can now walk his children home from school without being in agony, and he is hoping to get back to work before long: reasons to be cheerful indeed.

Longevity: Nature or nurture?

Fergus Walsh | 12:03 UK time, Friday, 2 July 2010

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PepeI remember watching my wife's 94-year-old grandfather reverse his car out of the drive. Pepe's girlfriend was sitting next to him in the passenger seat. As I marvelled at his driving skills I also wondered whether his longevity and good health were down to the genes he inherited, or the lifestyle he led.

Two unrelated studies today add further food for thought. US scientists believe they have found a means of predicting how likely it is someone will live beyond the age of 100. The research is based on genetic markers found in exceptionally long-lived individuals. The scientists admit the prediction is not wholly accurate and they conclude that other factors, such as our environment, play their part.

Which brings me to another report, this time from the National Audit Office, which shows that the life expectancy gap between rich and poor in England is widening. This underlines the point that nurture plays a key role in how long we live. Smoking, poor diet and lack of exercise are significant factors.

It is important not to be fatalistic about your health and not to blame your genes for everything. Many people who have unhealthy lifestyles wrongly presume that their cards are marked at birth, so they may as well not bother. They may point to committed smokers who've lived to a ripe old age; such people exist, but far more end up in an early grave. At the same time, a healthy lifestyle is no guarantee of longevity. Life, as they say, is complicated.

How long do you want to live anyway? To 100, 120, or beyond? Most adults I discuss this with are far more interested in quality of life rather than simply living to extreme old age. The goal is surely to live not just longer, but healthier. That is an ambition which the NHS, scientists and individuals should all strive towards.

Swine flu: How did we do?

Fergus Walsh | 17:14 UK time, Thursday, 1 July 2010

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This blog is no longer called Fergus on Flu, but I'm still happy to talk about pandemics.

Boiling down nearly 200 pages to two words, the Hine review's verdict on the UK response to H1N1 can be summed up as "highly satisfactory". Dame Deidre Hine repeatedly praises the planning and the response to the pandemic last year.

That said, there is a series of lessons to be learned, in particular about contract negotiations with vaccine manufacturers. She says the failure, in 2007, to negotiate get-out clauses in the vaccine contract "exposed the Exchequer to some risk". In other words, it cost the tax-payer money and we were left with lots of unused doses of vaccine. What Dame Deirdre does not tell us, because of commercial confidentiality, is how much that cost us.

Before condemning ministers and officials for poor planning, it's worth pointing out that no country in the world managed to negotiate a break clause with GlaxoSmithKline for its Pandemrix H1N1 vaccine.

Furthermore, had the pandemic been as bad as everyone originally feared, those extra doses of vaccine might have saved tens of thousands of lives.

Once last point. Given how mild the H1N1 pandemic was, how on earth are health officials and virologists ever going to interest the public in the potential dangers of the next pandemic? The next one may be a lot more serious.

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