Wednesday, 31 July 2013

NHS patient information leaflets are “inaccurate, inconsistent and confusing”

Informed choice is a key ingredient of modern day medical ethics. Many patients now get a variety of information from the internet, but much of the information available can be at best confusing. We might think that leaflets used by the NHS would at least be consistent and clear. Yet this appears not to be the case.

The NHS’s patient information leaflets are “inaccurate, inconsistent, and confusing – and effort is duplicated” argues GP Margaret McCartney on bmj.com.

In a feature published today, Dr McCartney says the NHS is “awash” with patient information and with many trusts commissioning leaflets from external companies and others writing their own, it is difficult to know how efficient and effective these leaflets are.

In a personal view, Dr McCartney says the NHS is “awash” with patient information and with many trusts commissioning leaflets from external companies and others writing their own, it is difficult to know how efficient and effective these leaflets are.

Previous studies have shown that leaflets are providing patients with inconsistent guidance and others are giving conflicting advice. As such, patients are being given very different information depending on where they live.

A study carried out on one set of leaflets for the removal of kidney stones found they did not consistently mention common complications and had a wide variation of information on drugs and pain-killers. Furthermore, complications were often inadequately explained.

Sir Muir Gray, co-chair of the executive council of the Information Standard (a scheme for organisations producing evidence based healthcare information for the public), said “It’s a stupid system, a waste of money, and, without rigorous standards […] the information is biased and misleading”.

McCartney says that the problem of varying leaflets is not new: a BMJ investigation in 1998 found inaccuracies and outdated information in leaflets given out by general practitioners.

One researcher at the University of Oxford says the problem is that “the NHS still fails to take this seriously”, adding that, at the moment, in most NHS trusts there is no one who has responsibility. This means that leaflets can end up amateurish “with the evidence and uncertainties not expressed clearly”.

One spokesman told the BMJ that NHS England is, however, launching a “major project” in September which they hope will “standardise all information”.

McCartney concludes that the challenge now is “to adopt high standards […] updating information regularly and making it easily accessible”. She adds that “this is one area of the NHS where efficiency savings look ripe for the picking”.

From an ethical perspective, it is important to understand that patient leaflets are no substitute for a consultation between doctor and patient. Patient needs in relation to informed consent can be specific and often depends on lifestyle, family or relationships. How a patient ways up options will depend on these personal circumstances and needs. A leaflet is very unlikely to be able to address these specific needs. Doctors should not simply 'inform'; they should also listen  and provide information that helps their patient to make a decision that is relative to their needs and is right for them.

Patients may also seek reassurance that their choice is right. A leaflet is unlikely to help with this. Informed consent is a dialogue in which there is two way information flow between doctor and patient. Nevertheless, leaflets should not be confusing. The truth is that modern medicine for all its advances has a great deal of uncertainty. How we deal with that is tricky. Patients often want answers. Living with uncertainty is difficult for both doctor and patient.

Monday, 29 July 2013

NHS111 an 'abject failure' says BMA

The news that NHS Direct is seeking to pull out of its 'financially unsustainable' NHS 111 contracts has received a strongly worded reaction from the doctors organisation the BMA and questions are now being asked about the tendering process and how contracts have been awarded. 

Responding to the announcement that NHS Direct is seeking to withdraw from its NHS 111 contracts, Dr Chaand Nagpaul, Chair of the BMA’s GP committee said:

“The implementation and planning of NHS111 has been an abject failure.

“NHS Direct struggled to cope with the volume of calls it was receiving despite having years to plan for the launch of NHS 111. Other already overstretched services, such as GP out of hours providers, have had to step in and undertake the workload that was supposed to be dealt with by NHS 111. It is worrying that patients had to wait twice as long as recommended for their calls to be answered.

“Sadly, many of these failures have occurred in many parts of the country.

“The decision by NHS Direct to seek a withdrawal from its contracts to provide NHS 111 reveals worrying flaws not just with the tendering process for NHS 111 contracts, but for how contracts are awarded and monitored throughout the NHS. The Department of Health gave the BMA written assurances that there would be strict safeguards in place to ensure that NHS 111 providers would have the clinical and financial ability to deliver a safe, effective service to patients1.

“A number of local GPs2 and the BMA raised concerns during the tendering process about the low nature of some of the successful bids which were ignored.

“If this failure can occur with NHS 111, there is no reason why it could not happen with other parts of the NHS, as demonstrated by the recent investigation into the provision of out of hours services in Cornwall. Tonight’s Dispatches programme is likely to highlight a further catalogue of mistakes across NHS 111’s operations. We cannot have a situation where patients are placed at risk or suffer from substandard healthcare because contracts have been improperly awarded.

“The government should expand its review into NHS 111 to include an examination of what went wrong with the tendering process, particularly whether providers were given an advantage if they put in the lowest bid. There must be a firm commitment in the light of this failure from ministers that the procurement process across the NHS meets strict quality standards and happens safely and effectively.

“If NHS 111 is to recover it must receive proper funding and be closely integrated with local NHS services. The government must review its competitive tendering approach and instead look towards an integrated model based on cooperation between local services.”

Saturday, 27 July 2013

The Oxford Trobadors, Occitan poetry and song.

In preparation for the Oxford Trobadors concert for the Oxford Proms on 12th August, I have been working on Jaufre Rudel's lovely poem and song Quan lo riu de la fontana (When the water of the fountain). It is one of the medieval Occitan troubadours pieces in our repertoire.

So many of the songs of the troubadours tell of the pain of an unattainable love, a love far away, or amors de lonhdana. 

Amors de terra lonhdana           Those I love in a far off land
Per vos totz lo cors mi dol         for you all my body aches
E n'on puec trobar meizina        and I cannot find the remedy.


According to legend Jaufre Rudel was inspired to go on  a crusade after hearing of the beauty of Countess Hodierna of Tripoli. She was his amor de lonhdana.  Sadly he fell ill on the journey and was brought ashore in Tripoli a dying man.

Countess Hodierna is said to have come down from her castle on hearing the news.  Rudel died in her arms.

Is this romantic story true? Perhaps not, but it doesn't matter. It represents so much of  the poetry of Rudel.   I think of the story whenever I sing Lo Riu de la Fontana.

The music of the Oxford Trobadors is inspired by the langauge, poetry and culture of  Occitan, a language spoken today across the south of France and parts of Northern Italy.


One song that perhaps represents the spirit of the Oxford Trobadors is L'aiga de la Dordogna (waters of the Dordogne) composed by Jean Bonnefon of the renowned Occitan group Peiraguda. One of us, Denis Noble, performed this song 30 years ago in the town square in Ribérac as part of  a soirée occitane organised by Radio Périgord. It led to the formation of the Oxford Trobadors in 1998, and the song is a major feature of our repertoire. You can read the history of this event on the Oxford Trobadors website either in English or in Occitan.

It reminds us too that Occitan is a living language and culture of which as a group here in England we are proud to be a part.

You may also be interested in my article on the Battle for Regional Languages in France

Ray Noble is lead Tenor with the Oxford Trobadors

Friday, 26 July 2013

Economic growth is good, but is it sustainable?

UK Gross Domestic Product (GDP) is estimated by the Office of National Statistics to have grown by 0.6 % in the second quarter of 2013. Good news for the economy? I hope so; but is it enough and is it the 'right sort of growth'? The problem is that there is no sign that this growth represents any fundamental change in the structure of the economy.

I make this point not to be churlish. If growth leads to recovery then that must be good, but only if it is sustainable. This is not simply a left wing  point. It is also the caveat voiced by the right-wing think tank, The Centre for Policy Studies. As their Ryan Bourne comments:

"Only by raising the productive growth path of the economy with a proper supply-side agenda (to increase expected returns to businesses when planning investments) and re-aligning policies over the coming years towards more of a savings culture will we able to generate the kind of long-term sustainable prosperity which policymakers pay lip service to. The alternative is continuing to live beyond our means – relying on cheap money, government borrowing and an inflated housing market to create the mirage of prosperity before an eventual adjustment."

In other words, the fear is that the recovery will have all the hallmarks of previous growth fuelled by unsustainable debt levels.  There really isn't anything in the government strategy to avoid this. Nor is there anything so far from Labour  that they have answers to this conundrum, how to get sustainable supply side driven growth. 

One problem is political. A strategy for sustainable growth doesn't work with the electoral cycle. It requires a long term structural change  and solid investment. It also requires policies to ensure that such growth is shared through the economy and the regions. Distorted, asymmetric growth will still leave many regions struggling with high levels of unemployment. A long term strategy would seek to build new skill levels in hard-pressed regions to help businesses grow. It is a strategy for at least a decade and not the five year election cycle. Structural change is often painful as there are winners and losers. We would need a strategy to help those badly affected  by such change. Structural changes in  the past have ignored this side of the strategy. This was true in the Thatcher period and the consequences were dire with regional decline. 


Monday, 22 July 2013

Patient safety put at risk by long hours for Junior Doctors

Many junior doctors are still working excessive hours, due to increasing pressures and staff shortages, and are worried this is putting patient safety at risk, a IPSOS Mori report for the BMA has shown.

Ahead of potential negotiations with NHS Employers on a new contract for doctors and dentists in training, the BMA analysed feedback from over 1,600 junior doctors and final years medical students on the employment and training issues most important to them.

Despite the European Working Time Directive bringing in an average 48-hour working week, the reality is that some junior doctors are working up to 100 hours a week to meet demand, with many worrying for their own and their patients’ safety as tiredness impacts on their ability to work and make decisions safely. 

This comes amidst increasing concerns about patient safety in the NHS. Comments by the doctors in training reveal the problem:

“My average working week may have complied [with the ETWD] but on occasion, especially on nights, I would have worked over 100 hours in one week which was not safe by the end.” (Junior Doctor, Scotland)

“Current hours are bad enough, especially since we have to stay late unpaid most days to finish ward work due to poor staffing. We need the same hours but more staff, not less staff more hours. (Junior Doctor, Wales)

Serious levels of understaffing are also resulting in junior doctors working unrecorded and unpaid extra hours in order to meet patient demand and to ensure extra work is not dumped onto colleagues.

“The fact is we feel obligated to stay to finish our jobs so that patient care doesn’t suffer and we also don’t want to ‘dump’ jobs onto our colleagues working the evening and night shifts.” (Junior Doctor, England)

A large number of junior doctors have also expressed concern at the impact of long hours or long stretches of consecutive shifts on their home lives, with the unpredictability of training rotations, lack of flexible leave and insufficient time to recuperate following unsociable hours all affecting morale.

“I should not have to work 12 day stretches, or 12 hour shifts; it’s not safe and means no quality of life outside work.” (Junior Doctor, England)

Commenting on the feedback, Dr Ben Molyneux, Chair of the BMA’s Junior Doctors Committee said:

“It is of great concern that junior doctors are being forced to work excessive hours and are often under intolerable pressure in order to ensure patient safety. There have been radical changes to the way we work since the current junior doctors contract was introduced 13 years ago. The feedback highlights that despite working time regulations, juniors are still working long shifts night after night as well as extra, unrecorded hours.

“We also need to address quality-of-life issues, such as getting decent notice of where and when we will be working and the use of fixed leave. Two weeks before the annual August changeover of jobs, thousands of junior doctors still don’t know basic details such as what they will be working or how much they will be paid. Some don’t even know where they will be working in a fortnight.

“The Keogh Review highlighted that despite the lack of support and value placed on junior doctors, they remain the best champions for their patients and this must not be lost to the growing sense of frustration they feel.

“We will now work towards negotiating with NHS Employers for terms and conditions that address junior doctors’ concerns and recognise the vital role they play in the NHS.”

It seems absurd that we can put tachographs into lorries to ensure drivers don't drive beyond legal specifications, and yet we can't regulate the hours worked by junior doctors. Staff shortages and lack of funding are taking their toll on patient safety. 

Plain packaging makes cigarettes less appealing and increases urgency to quit smoking

While the Prime Minister, Mr Cameron, is mired in controversy over lobbying and tobacco, having ducked the intention to introduce plain packaging, new research shows that plain, unbranded, packaging works. 

Plain packaging for cigarettes seems to make tobacco less appealing and increases the urgency to quit smoking, suggest early findings from Australia, published in the online journal BMJ Open.

Australia formally introduced plain brown packaging, accompanied by graphic health warnings taking up three quarters of the front of the pack, for all tobacco products six months ago.  So far, it is the only country in the world to have done so.

The researchers wanted to find out what effects the policy was having in the early stages, and whether it helped curb the appeal of tobacco, emphasise its harms, and encourages quitting among smokers.

They therefore interviewed 536 cigarette smokers in the Australian state of Victoria during November 2012 when plain packs were already available, in the run-up to, and immediately after, implementation of the legislation requiring all tobacco sold at retail outlets to be contained in plain packs.

The interviewees were all taking part in the annual phone Victorian Smoking and Health Survey, which is a representative survey of adults in the state.

Almost three out of four (72.3%) were smoking cigarettes from plain packs while the remainder (27.7%) were still using branded packs with smaller health warnings.

The smokers were asked whether they were as satisfied with their cigarettes as they were a year ago, and whether they felt the quality was the same. They were also asked how often they thought about the harms of smoking and about quitting smoking, and if they approved of the plain pack policy. And they were asked if they thought the harms of smoking had been exaggerated.

The results indicated that perception of exaggerated tobacco harm or the frequency with which smokers thought about the damage cigarettes might be doing to them differed little between the two groups. But plain pack smokers were 51% more likely to back the plain pack policy than were brand pack smokers.

And compared with smokers still using brand packs, the plain pack smokers were 66% more likely to think their cigarettes were poorer quality than a year ago. And they were 70% more likely to say they found them less satisfying.

They were also 81% more likely to have thought about quitting at least once a day during the previous week and to rate quitting as a higher priority in their lives than were smokers using brand packs.

As the date for the legislation drew nearer, and more of the sample were smoking from plain packs, the responses of those smoking brand packs more closely matched those of plain pack smokers in terms of smoking’s appeal.

This could simply reflect the reduced likelihood of being able to smoke from a brand pack or “social contagion,” suggest the authors.

But, they conclude: “The finding that smokers smoking from a plain pack evidenced more frequent thought about, and priority for quitting, than branded pack smokers is important, since frequency of thoughts about quitting has strong predictive validity in prospective studies for actually making a quit attempt.”

And they add: “Overall, the introductory effects we observed are consistent with the broad objectives of the plain packaging legislation. We await further research to examine more durable effects on smokers and any effects on youth.”

Wednesday, 17 July 2013

One in six hospitals offers private services to boost income

Privatisation of provision in the NHS is moving apace a new investigation has shown. One in six hospitals in England have introduced new private treatment options this year, as cost pressures tighten restrictions on some NHS services, reveals a BMJ investigation today.

This includes a growing number of hospitals offering patients the choice of “self funding” for treatments and services that are subject to restrictions or to long waiting times on the NHS, such as IVF, cataract surgery and hernia repair.

In these cases, treatments are offered at cheaper rates than in the private sector.

The BMJ obtained data from 134 acute hospital trusts in England through freedom of information requests and found that:
119 trusts (89%) now offer traditional private care or “self funded” services
21 (16%) added new self funding or private treatment options for 2013-14, and
17 (13%) now allow patients to pay for one or more services at notional NHS rates, under the self funding scheme

Providers told the BMJ that the schemes make care more accessible. But critics say that the growth of self funding has muddied the waters between private care and the NHS by creating a two tier system - particularly in combination with government rule changes that allow hospitals to raise up to 49% of funds through non-NHS work.

Hospitals to have introduced new options for patients in the past year include Warrington and Halton Hospitals NHS Foundation Trust for varicose vein surgery, Epsom and St Helier University Hospitals NHS Trust for liver scans, and age related macular degeneration, and Princess Alexandra Hospital NHS Trust in Essex for imaging services and chemotherapy.

Mid Cheshire Hospitals NHS Foundation Trust has also recently begun offering “self funded” cycles of IVF treatment for patients who have used up their NHS funded cycles.

Many trusts that the BMJ contacted said they did not differentiate between “self funded” and “private” care. But John Appleby, chief economist at the healthcare think tank the King’s Fund, said that, regardless of price, care was still being funded from patients’ own pockets and was driven by cost restrictions.

Critics argue that self funding not only blurs the lines between NHS and private care but could also disadvantage NHS patients because, unlike more traditional private patients, self funding patients are often treated in the same premises as NHS patients.

The lines are arguably being blurred even further by a new scheme from the private provider Care UK, which recently introduced a new self pay option at four of its 11 NHS funded treatment centres across England.

A spokesman for Care UK said self-pay patients “will not be prioritised over NHS patients.” But Nicholas Hopkinson, a consultant chest physician in London, said he opposed self funding as it could lead to an “inferior service” for those not paying.

John Appleby believes that, as self pay schemes expand, they should be strictly governed and separated from NHS care to ensure that NHS patients are not being adversely affected.

The Foundation Trust Network, which represents NHS foundation hospital trusts in England, said that most trusts had systems in place to stop paying patients “queue jumping” ahead of NHS patients when being treated in the same facility, and that it expected more treatments to be available to self funding in the future.

But David Hunter, Professor of health policy and management at Durham University, warns that not only could self funding schemes pave the way for “a two-tier or multi-tier system which is both complicated and inequitable,” they could also lead to commissioners and providers focusing their energies on more lucrative procedures to raise additional funds

Monday, 15 July 2013

Rocking the foundations of biology and politics

A major revolution is occurring in evolutionary biology. In this voices from Oxford video the President of the International Union of Physiological Sciences, Professor Denis Noble, explains what is happening and why it is set to change the nature of biology and of the importance of physiology to that change. The lecture was given to a general audience at a major international Congress held in Suzhou China.

The implications of the change extend far beyond biology itself. This video will interest economists, business leaders, politicians and others who deal with the important social questions that have been raised by ideas in evolutionary biology ever since Darwin wrote his Origin of Species.

This will change your view of genes and the gene-centred view of biology, sociology and politics. Tragically for decades this 'selfish gene' view, that we are 'prisoners' of our genetics, genetic determinism has bedevilled biological thinking and influenced sociological thought. The idea that society 'doesn't exist', or that where it does it is simply an aggregate of  individual, 'self-interested behaviours' has been at the centre of economic and political thought for almost half a century.

It had its zenith with Thatcher's famous statement that "there is no such thing as society." I would also argue that it was also central to New Labour's approach. We stopped seeking social solutions to social problems. Why? Because we stopped believing in 'social problems'. Problems were to do with individuals behaving badly. 

It is the same thought structure that leads to the stereotype of 'welfare scroungers' and 'welfare dependency' rather than addressing the real social and economic issues.

What biology is teaching us now is that environmentally acquired characteristics can be inherited. In other words, the environment matters and that includes the social environment. It affects our health and the health of our offspring. If we are to address health issues we should stop simply seeking a gene-centred magic bullet, but consider social, preventative solutions.

Physiology is rocking the foundations of evolutionary biology by Denis Noble is published as an article in Experimental Physiology.

You may also be interested in my article: Hilary and Steven Rose lift the lid on modern biomedical science

Ray Noble is News Editor for Voices from Oxford

Oxford's cosmological time travellers

“It’s all around us. It’s hitting us now; an afterglow of the big bang” Oxford cosmologist Jo Dunkley enthrals her audience in this Voices from Oxford video, 'measuring the universe'. We are bathed in light; not in this case light from the sun or from the stars, not light from the galaxies, not light as we know it best, but light created at the very origin of the universe, the so-called ‘cosmic microwave background’; light generated by the big bang at the beginning of the known universe some 14 billion years ago.

Jo Dunkley and her team look back in time, far back, almost to the origin of the universe itself; as close, in fact, as 400,000 years. It is almost as if you could touch it. Or at least you can see its remnants. “It is a snapshot of the universe when it was just 400,000 years old” She explains as it appears on the screen. But it isn’t a warm glow, it’s a cold light, -270 degrees, the “seeds of cosmic structures; tiny ripples in the early universe that would go on to form the galaxies we see today.”

Jo Dunkley and her team are the closest we can get to time-travellers. But their time machines are not the stuff of science fiction, but powerful telescopes in space, in this case Planck, the European Space satellite, looking deep and deeper into space, beyond the galaxies we see, to older galaxies and further, deeper to the period just after the big bang, the period referred to as the inflation.

The universe she explains was much tidier with just these tiny ripples. Things got much messier later on when galaxies formed and eventually life and humans. “We are much more difficult to model”. But we can measure the cosmic background radiation in terms of scale; how big are the ripples in temperature; or “how big are the blobs or bumpiness” and produce a model that fits it; a “cosmological fingerprint”. And from this it can tell us the geometry of the universe and its expansion rate as well as the initial conditions of the big bang.

What is new this year is that this modelling “tells us what was happening in the first few seconds of the universe, a period of ‘inflation’; a rapid expansion from smaller than the size of an atom to the size of the sun in the first trillionth of a trillionth of a second.” But she explains we also have a measure of the stuff our universe is made of. What we can see, the stars and the galaxies, is only 5% of the total. The rest is dark matter and dark energy which we “don’t yet understand”.

There is a lot of work yet to be done by Oxford’s intrepid time-travellers.

Ray Noble is News Editor for Voices from Oxford

Saturday, 13 July 2013

Broken pledges and the crisis in the NHS

There was the fanfare, not exactly trumpets, but soothing, calming, reassuring...reassuring. The date is Monday January 4th 2010. A week is a long time in politics, three years is an age, so we may not remember; and if we do we may be inclined to ask so what, who believed them anyway?

It was the day Mr Cameron, launched the Tory party's draft manifesto for the NHS. It was that speech in which the then Leader of the Opposition pledged there would be no top down reorganisation of the NHS. It  was also a speech in which he said the Tories would not make the sick pay for the debt crisis.

Three years on we have major top down reorganisation, £20 billion cuts in NHS funding through 'efficiency savings' which all health bodies including the BMA say have pushed the NHS to a crisis point. NHS England inform us that unless funding levels are increased the NHS in England is heading for a shortfall of £30 billion by 2020. That translates into real cuts that will affect the ability of the NHS to meet patients needs.

In making his pledge David Cameron said that "With the Conservatives there will be no more of the tiresome, meddlesome, top-down re-structures that have dominated the last decade of the NHS." This pledge was reiterated as part of the Coalition agreement.  The Liberal Democrats and the Tories have reneged on this pledge; they have failed to listen to the concerns of leading bodies representing health care professionals; they have failed to listen to the concerns of patient bodies.

Privatised provision has created a problem for commissioning bodies with many serving on the new bodies being potentially compromised through pecuniary interest. This problem is of great concern to the doctors organisation the British Medical Association. The potential for diverting funds from 'in-house' services provided by the NHS is also a concern leading to more private provision as the in-house service is allowed to deteriorate. 

It is no surprise that coupled with creeping privatisation of provision the issue of payment at the point of delivery is brought into question for initially some services. The divisive question is raised, why should the taxpayer pay for your therapy, hearing aids, or whatever it is? It is the same kind of divisive question applied to the changes in welfare provision. The attack on universal benefits turns to an attack on universal health care provision. Let's not say we cannot heed the warning signs. 

Thursday, 11 July 2013

Deepening crisis in the NHS

NHS England has today called on the public, NHS staff and politicians to have an open and honest debate about the future shape of the NHS. This is set against a backdrop of flat funding which, if services continue to be delivered in the same way as now, will result in a funding gap which could grow to £30bn between 2013/14 to 2020/21. We certainly cannot have an honest debate unless  the government is willing to be transparent. A public consultation, a 'call to  action', is a little late in the day. The horse has bolted and the NHS in England faces funding and staff shortages and an ill-conceived reorganisation. 

The NHS is reeling from an unwanted reorganisation and, far from being ring fenced as claimed by the government, cuts of £20 billion in so-called 'efficiency savings'. The government has delivered a mortal blow to the NHS and introduced privatisation which will  starve in-house services of much needed funding. 

Responding to NHS England’s 'call to action', Chair of BMA Council, Dr Mark Porter, said:

"It will come as no surprise to anyone to hear that the financial crisis in the NHS is deepening, particularly to NHS staff seeing the impact of these pressures first-hand. The BMA’s own analysis shows that the service will have to make do with three quarters of its existing budget.

"The Government has spent two years forcing through an unwanted reorganisation instead of giving the service space to address the funding crisis. New organisations are struggling to establish themselves while in deficit from the start.1

“So far most of the savings found have come from staff pay or cuts in tariffs for services, which is neither sustainable nor likely to deliver the savings needed to protect patient care.

"Doctors care deeply about patient care and more want to be empowered in order to make the necessary changes but are being held back by increased red tape and lack of support from the top. In the face of rising patient demand, an ageing population and the cost of keeping pace with new technologies and treatments, it is no surprise they feel demoralised and frustrated. A trend that will only worsen if they continue to be made the scapegoat for the problems facing the NHS and when the pressures on them are increasing. Doctors have and always will work on behalf of their patients and yet the Government has so far brushed them aside, instead proclaiming themselves as the only patient champions. I hope that doctors will be given a real voice in helping to meet the challenges we face.”

Tuesday, 9 July 2013

Lack of informed consent for experiments on premature babies

Experimentation on premature babies has always presented ethical problems. Increasing numbers of babies are born prematurely and babies are surviving at younger gestational ages. Pushing the boundaries of intensive care often steps into the realm of the unknown. This creates problems of informed consent.

In an article on bmj.com, a senior doctor today calls for an  investigation of whether parents of premature babies were fully informed of the risks of a study on the health effects of varying oxygen levels.

Dr Sidney Wolfe, founder and senior adviser to the Health Research Group at Public Citizen, says it is surprising that the adequacy of consent forms for nearly identical studies in the UK, Australia, New Zealand, Canada, and other countries with similar regulation of human research, has apparently not yet been examined.

He argues that there may well be “serious problems” with such risk disclosure that must be addressed.

One such study, called SUPPORT, was funded by the US National Institutes of Health and took place at many universities across the US between 2005 and 2009. A total of 1,316 extremely premature infants were randomly maintained at either higher (91-95%) or lower (85-89%) ranges of oxygen saturation.

The main aim of the study was to see whether the infants were more likely to die or suffer eye damage and blindness at the different oxygen ranges. In the early days of the development of intensive care of very premature babies, many suffered blindness as a result of being given high levels of oxygen. The principal problem for premature babies is that the lungs are very poorly developed. Only from the development of ventilator techniques has it been possible to keep these babies alive.

Wolfe says that parents were not adequately informed about the risks or true nature and purpose of the research, but others have staunchly defended this lack of informed consent. Intensive care for very premature babies, particularly now those born around 23 weeks gestation, is inevitably 'experimental'. The choices are stark. Either they are not kept alive or it must be accepted that the process of doing so will involve procedures the risks of which are difficult to assess.

Nevertheless Dr Wolfe argues that information on risks and possible outcomes was missing from the consent forms, and that the forms “failed to distinguish the important differences between these clearly experimental procedures for managing the oxygen therapy and the usual individualized standard of care the babies would have received had they not been enrolled in the study.” I suspect had they not been enrolled in 'the study' it would have been unlikely they would have survived, or at least it would have been impossible for the neonatologists to have given sufficient information to the parents for informed consent in intensive care. 

But there is one key concern Dr Wolfe highlights that should be addressed. He points out that  “many of the consent forms falsely stated that because all of the treatments proposed in this study are ‘standard of care’ there would be no expected increase in risk to the infants.” This is disingenuous at best. The truth must surely be that all procedures are expected to have risks. Keeping babies alive at all costs is not in itself ethical.

Others, however, have defended the lack of appropriate informed consent in neonatal trials.  In a recent BMJ editorial, eminent neonatologist Neena Modi implicitly argued that withholding some risk information would “reduce the burden of decision making at difficult and stressful times” and “would also reduce the risk of ‘injurious misconception,’ where participation is inappropriately rejected because of an exaggerated and disproportionate perception of risk.”

But Wolfe suggests that the underlying principle behind these arguments “is that it is necessary, via inadequately informed consent, to blur the line between research and standard of care to facilitate more consent and participation.”

This, he concludes, “appears to be exactly what occurred when consent was obtained for the SUPPORT study subjects.”

Indeed I would argue that that is precisely what has led to the development of modern neonatal intensive care procedures. For the very premature babies it is largely experimental. But more babies are now surviving as a result of these techniques and the EPICURE study has tracked reasonably good outcomes through childhood. The difficulty is in being able to predict which babies are likely to be those with a good outcome.

These difficulties in predictive outcome and the risks of treatment should be shared with parents. The key question is not whether this should be so but how it should or can be done so as to enable parents  to share in the decision making process.  


Battle for regional languages in France

The Oxford Trobadors will be performing  as part of the Oxford Proms on Monday 12th August at the Holywell Music Room, Oxford. You might think this article strays from the focus of this blog. Well of course it is in large part a promotion of my music, that much I confess. I make no apologies for that. I think my music is good, else I wouldn't perform it! But it is also an opportunity to consider the status of minority languages in Europe, and in this case that of Occitan.

The Oxford Trobadors take their inspiration from the music of the language Occitan in which the 12th and 13th century Troubadours composed. It is often described as La Lenga de l'amor' (the language of love). But the language and culture are still alive today in the south of France and parts of Italy and Catalonia, and the group also perform modern, contemporary Occitan songs.  An example is Nadau ta Baptista (Christmas for Baptiste), a gently lilting Pyrenees lullaby composed by the Occitan group Nadau, and here performed by the Oxford Trobadors.

If you visit Toulouse you will hear metro announcement not only in French but also in Occitan. In 1948 there were some 13 million people in the south of France who spoke Occitan as their maternal language. It is difficult to estimate the numbers today, although from surveys it is thought there are between one and two million speakers.  The language and culture were considerably weakened by the actions of the French State; regional languages were considered to be a threat to the unity of France. It was for many decades prohibited for children to speak Occitan in schools; they were punished if they were caught doing so, and as a consequence parents encouraged their children to speak French.





You will not always hear it referred to as Occitan, but by the name of one of the several dialects of Occitan.  Each has its distinctive pronunciations. Its status continues to be threatened by the failure of the French government to afford it recognition.

Last year, thousands of demonstrators took  to the streets of Toulouse protesting in favour of a Law on Regional Languages. The French government refuses to ratify the European Charter for Regional and Minority Languages. But the situation worsened  with a new School Reform programme adopted by the French National Assembly in March, and which the Institute for Occitan Studies believed threatened the regional languages of France. After demonstrations and vigorous representation, the law has been amended. The new school reform bill, adopted  last month recognises the rights of the regional languages in the school curriculum.  As the President of the Institute, Pierre Bréchet,  says:

"Nous avons conquis une place dans l’enseignement, c’est une réussite, mais cela ne suffira pas pour l’amplification de la transmission si elle n’est pas complétée par une présence dans la vie publique, les medias et tout ce qui favorise la socialisation… toutes places à occuper !"

The battle for recognition goes on, and the Oxford Trobadors are proud to do their bit in introducing audiences across Europe to the language and culture of Occitan.

See also artlicle Oxford Trobadors, Occitan poetry and song

Sunday, 7 July 2013

Labour must not let the media dictate terms

What the country most needs now is for an alternative to austerity to be put to voters. It is a difficult argument. Most voters buy into the narrative of cutting the deficit, and they have bought into the welfare problem.  It is a false narrative because the deficit was not and is not the cause of UK economic woe, and nor is welfare dependency part of the problem.

Even the Centre for Policy Studies argues for an alternative to austerity. The right wing think tank argues for a growth strategy. Labour it seems has given up the argument against austerity. It appears to have given up arguments  for spending on growth. But now a greater danger looms. Macho politics set by the media. 

Here I have t make a confession. I was a Blairite before Mr Blair. I believed if Labour was to be a credible party of power it had to change. It had to abandon false tokens, such as nationalisation, which in any event did not define socialism. But this is not a Blair moment, and Labour should not allow the media to set the boundaries of the debate. 

Mr Miliband should show leadership, but he also  needs to be brave in setting out a genuine alternative to austerity. Else what choice will there be for voters in 2015? 

Wednesday, 3 July 2013

The truth lost in austerity; it wasn't public spending that got us into this mess.

How convenient it is for the government that the real cause of our economic woe seems to have become a distant media memory. Better it is for the government to blame the poorest for the crisis, rather than question how it was that the capitalist edifice crumbled.

The inconvenient truth is that far from it being 'social welfare' that brought us to our knees, it was middle class greed.  It wasn't the deficit; it wasn't the 'welfare dependent' poor.  It was middle class greed and a banking sector gone sour;  a banking sector willing to sell us their 'toxic' financial products pushing personal debt higher and higher, and in the UK to the highest levels in the world.

No it wasn't and isn't public debt that was or is our problem; it was personal debt. Whilst the government have been on an ever failing austerity drive of cuts that are stripping services to the bone, hitting the poorest the hardest, slashing funding to the NHS with £20 billion of cuts, and attacking those on benefits, the Bank of England have created some £275bn of new money through quantitative easing making it possible for us to live with our debts. 

Harold Wilson once said that a week is a long time in politics. Three years must be an age. But are we doing anything to prevent a repetition of capitalist failure? The answer is surely very little. The greatest hope for the coalition is that we have another boom, that house prices rise, that banks lend more money, that we stoke another furnace of unsustainable debt. 

Perhaps the logic is that it only went wrong because of the actions of 'rogues' in the banking system. This would be the triumph of hope over reality. It was the banking system that went sour. Greedy bankers, greedy shareholders, that did away with mutual building societies and turned them into banks. Banks that expanded carving out ever green territory, buying each others toxic lending: promissory notes that had little chance of being redeemed. 

Yet the government, if opinion polls are to be believed, have  persuaded the public that it is all to do with government spending and 'welfare dependency'. They have succeeded in blaming the poor. And the reason is obvious. Any other narrative is uncomfortable. We would like it all to go back to how it was; toxic and unsustainable, in the hope it will work next time. God forbid that government ever did the wisest thing and raise taxes. Yet if we were truly all in this together then surely we should all pay. 

Monday, 1 July 2013

Hazardous Pesticides found in Chinese Herbal Remidies Sold in UK, Europe and North America

A major scientific investigation by Greenpeace has revealed that traditional Chinese herbal products available in the UK are laced with a toxic cocktail of pesticide residues, many of them exceeding levels considered safe by the World Health Organisation (WHO).

In total, 36 samples of herbal products imported from China were collected, including chrysanthemum, wolfberry, honeysuckle, dried lily bulb, san qi, Chinese date, and rosebud. These products are popular amongst health-conscious consumers and Asian communities, and are purchased for medicinal use.

However, the independent analysis found that a majority of the samples contained a cocktail of pesticides, some of them extremely dangerous:

• 32 out of the 36 samples collected contained three or more kinds of pesticides.

• 17 out of 36 samples showed residues of pesticides classified by the World Health Organization (WHO) as highly or extremely hazardous.

• 26 out of 29 European samples showed pesticide residues in quantities exceeding what European authorities consider the maximum safe level (MRLs).

The test results in the US, UK, Canada, France, Germany, Italy and the Netherlands show that consumers are being exposed to pesticides classified as highly hazardous by the World Health Organisation. Out of the 36 samples tested, 32 samples contained three or more pesticides.

Commenting on the findings Dr Doug Parr Chief Scientist at Greenpeace UK said:

“The toxic pesticides found in these products pose a real health risk to consumers. People who use these products do so hoping to ease medical conditions and improve their health – they will be shocked to learn that along with natural herbs they have been taking they are exposing themselves to a synthetic cocktail of potentially dangerous pesticides.

The UK government and the EU must improve their testing regime for products imported from China as a matter of urgency so that users of these remedies know that they are safe.”

Research has shown that long-term exposure to pesticide residues in food can cause the toxic chemicals to accumulate inside the body. Chronic pesticide poisoning may lead to health impacts including hormone disruption and reproductive abnormalities.