White Widow: Searching for Samantha

My documentary about Samantha Lewthwaite is to be broadcast on July 2nd, 10.35 on BBC1

Samantha-lewthwaitexx

Samantha Lewthwaite is one of the world's most wanted terrorists. The widow of Germaine Lindsay, one of the July 7 bombers, she claimed ignorance of her husband's lethal intentions, saying she was a victim too. But for the past three years, international security services have been after the so-called `White Widow', who is now on the run in Africa, charged with conspiracy to cause explosions. How did this schoolgirl from a quiet Home Counties market town end up as a friend and confidante of some of the top echelons of al-Qaeda? Film-maker Adam Wishart has spent a year tracking down the real story of Samantha Lewthwaite, revealing her path to radicalisation and the hate preacher who inspired her.

 

Please get in touch if you want to know more. 

adam (a) liketv.com

 

SHOULD I TEST MY GENES? The Price of Life, BBC2, 9pm, 5th July

Adamblood
Last year, after my mother died of cancer that she seemed to have inherited from her mother I set out to discover if I also had this familial cancer gene, or any other gene that might impact on my health.

To understand why I might want to know I met other patients who have already discovered they have bad genes. Julie’s mother and sister both have cancer, and she is facing the terrible choice of having adouble mastectomy so that she can prevent herself from going the sameway.

One of the most extraordinary benefits of the brave new world ofgenetics is called Pre-implantation Genetic Diagnosis (PGD). Tracy and Thomas are in the midst of the process, screening embryos in order toprevent a gene mistake from being passed down the generations. Will the wonder of science deliver a healthy baby?

A few hundred couples go through PGD every year on the NHS? But there are millions of people in Britain who inherit diseased genes: is the NHS serving then? I reveal that if the NHS tracked through the families of patients with a disease called FamilialHypocholesterolemia then the nation could save thousands of people from suffering, and money which could be diverted to other patients inneed.

In the end, this is a film about whether or not I have any inherited genes? Morever, even if I do can the secrets of our blood foretell our destiny, and even if they could would it be worth knowing?

The BBC Webpage about it is here.

 

Follow me on Twitter: @adam_wishart

Join the Discussion: #testmygenes 

Add comments below. 

#23weekbabies: the price of life : the evidence

A few weeks ago, Ben Goldacre wrote, "If you do not link to primary sources, you are dead to me."

Seems fair enough to me. So this blog post provides some of the evidence and some of the links to primary sources for my TV programme “23 Week Babies: The Price of Life”, broadcast on BBC2 at 9pm on March 9th 2011. A 2 minute trail is here.

My view is that there are better places than television for all the facts and figures that surround the kinds of programme I make. So this document is for the nerds and geeks and anyone else who’s interested in the numbers. And for anyone who wants to hold me accountable.

Feel free to email me, or add comments. I hoping that if there are errors they aren't too terrible.

Please do join in the debate about the programme: 

Twitter: #23weekbabies

Adam Wishart

9 March 2011

Twitter: @adamswishart
Website: www.adamwishart.info
Facebook: www.facebook.com/adamwishart
Email: adam (at) adamwishart.info

CLAIM ONE: Chances of survival for 23 Weekers 

For babies born in the 23rd week, survival odds are as follows: 

- 91 out of 100 babies die in hospital in the first weeks of life. 

- 9 out of 100 babies leave hospital.

Of those 9: 

- 2 are severely disabled
- 4 are moderately disabled
- 2 have some impairment
- 1 survives unscathed.

How do we know this? The best research on the outcomes for extremely premature babies is the EPICURE study from the Nuffield Council of Bioethics Report, “Critical Care Decisions in fetal and neonatal medicine: ethical issues”. (2006) The researchers studied all the premature babies born during ten months in 1995 (1185 babies in total) and then followed up when they were two, six, and ten years of age.

This is the key table, from page 71 of the report. 

Nuffield
Surely, you might say, this evidence is out of date: the babies were first surveyed more than 16 years ago and, what with the general advancement of science, things must have moved on. If I may, I'll come back to the discussion of this point at the end of these notes, after looking at some of the other claims in the film.

 

CLAIM TWO: Rates of survival

 Another key claim in the film is that, in the words of Imogen Morgan the Clinical Director of the neonatal ward at the Birmingham’s Women’s Hospital, “The proportion of 23 week babies surviving isn't increasing… We are close to a limit of nature.”  

I also say that whilst there has been little improvement for babies born in the 23rd week, there has been significant improvement in babies born in the 24th week and above. 

The key paper for this proposition is from a series of studies from the Trent region of the UK : "Survival of extremely premature babies in a geographically defined population: prospective cohort study of 1994-199 compared with 2000-5." 

Here they studied all the babies born in one geographical region, Trent*. They compared the outcomes for babies born between 1994-1999 and those born between 2000-2005. 

What did they discover? "Survival of infants born at 24 and 25 weeks of gestation has significantly increased. Although over half the cohort of infants born at 23 weeks was admitted to neonatal intensive care, there was no improvement in survival at this gestation."

But, I hear you ask, that only takes us to 2005, which is 6 years ago. Bear with me, please.

* It’s better to look at these so-called cohorts because there is less bias than if you looked at, say, just one hospital which might be significantly better or worse than others. 

 

CLAIM THREE: Number of 23 weekers born

The film says that “a few hundred” babies are born in the 23 week of pregnancy each year. This is an estimate of the right order of magnitude, extrapolating from the fact that there were a total of 110 babies born at 23 weeks in most, but not all, neonatal units in England (from the Neonatal Data Analysis Unit: Neonatal Specialist Care in England: Report on Mortality in 2009). As the figures don’t include every single English unit – and nor do they include any units in Wales, Scotland and Northern Ireland – I extrapolated to “a few hundred”. A bit woolly, but the best we could do with the available data.

 

CLAIM FOUR: Cost to the NHS

The film says that the NHS spends about £10 million a year on these babies.

This is a simple calculation from these facts: 

- One night for one baby in a neonatal intensive care costs around £1000 in terms of equipment, staff, overheads and so on. 

- On average, these babies stay in hospital for about 35 days

- Say there are approximately 300 hundred babies per year

The estimate for the cost of baby Matilda, who goes home after 139 days is about £150,000. 

The cost is rising: according to the commissioners in the West Midlands the total cost for neonatal services in that area rose by 10% last year. Whether that is the whole of the trend or a blip is more difficult to calculate. 

Other considerations: 

- Within the total NHS budget of about £100 billion, the figure of £10 million is pretty insignificant.

- As 8 out of 9 of the surviving babies will be disabled, they will continue to cost the NHS throughout their lives, so these figures are just the start of the cost of these babies to the NHS. 

- As Heather Rutherford explains in the film, the care these people receive is greatly reduced once they hit the age of 18

- In the film, I ask Ann Aukett, a community paediatric who looks after survivors, if she is able to give the survivors the care they need, and she categorically says no. Whilst making the film, I met a 23 week baby who was two years old and who had had to wait a whole year for a physiotherapy appointment. Which suggests to me that we are not caring for these babies properly once they leave hospital, even before they are 18.

- I also saw a baby who was most likely born in the 22 week (often it is not possible to date conception exactly), but had been resuscitated despite the guidelines. So as a nation we spent a few thousand pounds keeping a baby alive that would almost inevitably die, and yet we couldn't provide simple therapy for a child that modern medicine had allowed to survive, but disabled. 

 

CLAIM FIVE: Britain amongst worst premature birth rates in Europe

The European Perinatal Health Report  collected data from across Europe in 2004 and published it in 2008. The data for premature births under 32 weeks is on page 131. (Below 32 weeks, of course, isn't the same as 23 weeks but the data is not available for 23-weeks and choosing the later range does mean that the numbers are quite large, and therefore more accurate. As the numbers of below 32 weekers goes up, then so does the absolute number of 23 weekers.)

Percentage of babies born prematurely at 32-weeks or less, by country:  

- England and Wales, Hungary, Austria = 1.4% [Highest percentage]

- Germany = 1.3%

- Denmark = 1.1%

- Italy, Ireland, = 1%

- Sweden, France, Greece, Finland = 0.9%

- Spain = 0.8%

- Malta = 0.7%

In other words, Britain has about fifty per cent more babies born (per capita) in prematurity than some other European countries.

 

CLAIM SIX: Link between premature births and deprivation

The epidemiologists state the evidence the best: "the incidence of very preterm birth is nearly twice as high in the most deprived areas compared to the least deprived areas" (Socioeconomic inequalities in survival and provision of neonatal care: population based study of very preterm infants.)

But it seems very difficult to discover why it is that people in deprivation have higher incidence of preterm birth. Many reasons are being studied – including smoking, alcohol and non-attendance of pre-natal check-ups - but the answer is not yet clear. 

 

CLAIM SEVEN: Intervention levels increasing, but survival rates not

Towards the end of the film, neonatal consultant Anne Aukett explains that 23 week babies are enduring more and more medical intervention. How do we know this?

Going back to the Trent Study mentioned in Claim 2 above, looking at the table on the second page, it says that between 1994-1999 the average time that 23 week babies spent on the ward was 22.9 days. And then between 2000-2005 that number had gone up to 34 days. So babies now spend nearly an extra two weeks on the ward, during which time they have a variety of medical interventions – often including ventilators down their throats and needles into their arms - which cause some pain and discomfort. 

These extra two weeks of pain have failed to provide any benefit according to the Trent Study. 

A different cohort published last year came to similar conclusions. “Survival in infants live born at less than 24 weeks’ gestation: the hidden morbidity of non-survivors” concludes that "Over the last 15 years, increasing numbers of babies at less than 24 weeks have received active resuscitation. Overall survival has not changed, but non survivors have endured significantly longer durations of intensive care." This includes data up to 2007. 

 

CLAIM EIGHT: Outcomes not improving over last 15 years

Throughout the film – and these notes - there is the tacit idea that the evidence as outlined above gleened from reports over the last 15 years remains true. But perhaps the outcomes have radically changed in the last couple years. Perhaps there is some unpublished data which suggests that there is a radical new treatment that is prolonging the lives of 23 week babies.

The first thing to note is that these studies are really the best evidence we have. In all these cohort studies there is very limited data from this year or last year. Part of the trouble is that it takes time, years, to collect and assess the data. Frankly these studies much be a bureaucratic nightmare: just imagine trying to follow a couple of thousand people for years, when we all lead such transient lives. 

Another problem is that to really understand the outcomes we have to wait for children to grow up. The cohort of the EPICURE study is now only 16 years old. And, as with all of our lives, long term outcomes is vitally important.

But just to check that there were no new studies that would radically change our view, I phoned  Elizabeth Draper, the professor of perinatal and paediatric epidemiology at Leicester University. She is the lead statistician on both the big cohorts in the UK, EPICURE and Trent. They continue to collect data. I asked her whether there was any evidence that survival rates for 23 week babies have increased in the last few years. Her reply was that there wasn't any statistically significant evidence.

The real problem is that the numbers of 23 week babies is so small it is difficult to create a powerful enough study to reveal it.

 

CLAIM NINE: Other countries have better survival rates? 

Well in fact this isn’t my claim. But it is often mooted on the radio and on discussion boards. People claim that the outcomes for Sweden or America are much better. If only Britain would do more doctoring then everything would be okay. 

Here is one of the studies that is sometimes referred to.  One-Year Survival of Extremely Preterm Infants After Active Perinatal Care in Sweden. 

This suggests that Swedish neonates have much better survival rates that in the UK. About 10% of 22 weekers survive, and about 50% of 23 weekers survive. 

I spoke to one of the authors, Professor Karal Marsal, about why this might be. Simply, he wasn’t sure. It might that the Swedes have different protocols on delivery, they might be more interventional in the delivery room. This is mentioned in the paper. But certainly another reason was the ‘background population’. 

Britain simply has a very different group of mothers giving birth to these neonatal babies than the Swedes. He said they have basically almost no teenage mothers, and yet that is one of the groups prone to preterm labour in the UK is just this one. And we have high rates of teenager motherhood. Also if you look at the Eurostat data cited above, about 17 per cent of British mothers smoke during pregnancy, whilst less than half that percentage in Sweden. Similarly, 91 per cent of Swedish women visit their doctor during the first trimester of pregnancy whereas only 65 per cent of British women do. 

It seems likely that if you have a more health aware and more active cohort of mothers, who give birth at much lower rates of prematurity, then the health of their offspring is also likely to be better. And therefore the survival of neonates born in extreme prematurity would be better. 

Professor Liz Draper also told me that comparing cohorts between countries is also very difficult. Sometimes it is difficult to compare like with like. 

#23weekbabies: the price of life : the media

#23weekbabies : The Price of Life BBC2

Hand

 

!!! PLEASE ADD YOUR FEEDBACK AT THE BOTTOM OF THIS BLOG POST !!

Watch on vimeo here


Babies born 4 months early - in the 23rd week of pregnancy - exist on the very edge of life. For BBC Two, I secured unprecedented access to an intensive care neonatal unit to follow these babies as they struggle to survive.

The odds are stark: of every 100 that are born, only one will reach adulthood without a disability. Because of these statistics, the Dutch do not resuscitate these babies. And now NHS managers are wondering if the money could be better spent on other patients?

23weekbabies: The Price of Life tells the compelling story of the people whose everyday lives are affected by extreme prematurity. Claire was 23 weeks pregnant when her waters broke. She needs a Caesarian section but will her daughter, Holly, survive and should we as a nation be paying for her expensive treatment?

The ethics are complex, because the outcomes are so starkly varied. Heather was also born in extreme prematurity: now, aged twenty-one, she is quadriplegic with movement in one arm. She says, 'Is this as far my life can go. There is obviously nothing else out there for me. So what is the point really.'  In contrast, ten-year old Molly is a healthy girl, every parents dream. Her father, a doctor, says, 'I think not to save life because some of them are disabled is a political statement of a euthanasia that isn't really acceptable in the mores of our society.'

I ask whether keeping these babies alive is medicine at its most pioneering and brilliant or is it science pushing the limits of nature too far.

Follow on Twitter: #23weekbabies

Read the Nuffield Council on Bioethic's Report

23 week babies : The Evidence

This blog post provides some of the evidence for my TV programme “23 Week Babies: The Price of Life”, broadcast on BBC2 at 9pm on March 9th 2011.

My view is that there are better places than television for all the facts and figures that surround the kinds of programme I make. So this document is for the nerds and geeks and anyone else who’s interested in the numbers. And for anyone who wants to hold me accountable.

Feel free to email me, or add comments, about my errors. 

Please do join in the debate about the programme: 

Twitter: #23weekbabies

Adam Wishart

7 March 2011

Twitter: @adamswishart
Website: www.adamwishart.info
Facebook: www.facebook.com/adamwishart
Email: adam (at) adamwishart.info

 

CLAIM ONE: Chances of survival for 23 Weekers 

For babies born in the 23rd week, survival odds are as follows: 

- 91 out of 100 babies die in hospital in the first weeks of life. 

- 9 out of 100 babies leave hospital.

Of those 9: 

- 2 are severely disabled
- 4 are moderately disabled
- 2 have some impairment
- 1 survives unscathed.

How do we know this? The best research on the outcomes for extremely premature babies is the EPICURE study from the Nuffield Council of Bioethics Report, “Critical Care Decisions in fetal and neonatal medicine: ethical issues”. (2006) The researchers studied all the premature babies born during ten months in 1995 (1185 babies in total) and then followed up when they were two, six, and ten years of age.

This is the key table, from page 71 of the report. 

Nuffield
Surely, you might say, this evidence is out of date: the babies were first surveyed more than 16 years ago and, what with the general advancement of science, things must have moved on. If I may, I'll come back to the discussion of this point at the end of these notes, after looking at some of the other claims in the film.

 

CLAIM TWO: Rates of survival

 Another key claim in the film is that, in the words of Imogen Morgan the Clinical Director of the neonatal ward at the Birmingham’s Women’s Hospital, “The proportion of 23 week babies surviving isn't increasing… We are close to a limit of nature.”  

I also say that whilst there has been little improvement for babies born in the 23rd week, there has been significant improvement in babies born in the 24th week and above. 

The key paper for this proposition is from a series of studies from the Trent region of the UK : "Survival of extremely premature babies in a geographically defined population: prospective cohort study of 1994-199 compared with 2000-5." 

Here they studied all the babies born in one geographical region, Trent*. They compared the outcomes for babies born between 1994-1999 and those born between 2000-2005. 

What did they discover? "Survival of infants born at 24 and 25 weeks of gestation has significantly increased. Although over half the cohort of infants born at 23 weeks was admitted to neonatal intensive care, there was no improvement in survival at this gestation."

But, I hear you ask, that only takes us to 2005, which is 6 years ago. Bear with me, please.

* It’s better to look at these so-called cohorts because there is less bias than if you looked at, say, just one hospital which might be significantly better or worse than others. 

 

CLAIM THREE: Number of 23 weekers born

The film says that “a few hundred” babies are born in the 23 week of pregnancy each year. This is an estimate of the right order of magnitude, extrapolating from the fact that there were a total of 110 babies born at 23 weeks in most, but not all, neonatal units in England (from the Neonatal Data Analysis Unit: Neonatal Specialist Care in England: Report on Mortality in 2009). As the figures don’t include every single English unit – and nor do they include any units in Wales, Scotland and Northern Ireland – I extrapolated to “a few hundred”. A bit woolly, but the best we could do with the available data.

 

CLAIM FOUR: Cost to the NHS

The film says that the NHS spends about £10 million a year on these babies.

This is a simple calculation from these facts: 

- One night for one baby in a neonatal intensive care costs around £1000 in terms of equipment, staff, overheads and so on. 

- On average, these babies stay in hospital for about 35 days

- Say there are approximately 300 hundred babies per year

The estimate for the cost of baby Matilda, who goes home after 139 days is about £150,000. 

The cost is rising: according to the commissioners in the West Midlands the total cost for neonatal services in that area rose by 10% last year. Whether that is the whole of the trend or a blip is more difficult to calculate. 

Other considerations: 

- Within the total NHS budget of about £100 billion, the figure of £10 million is pretty insignificant.

- As 8 out of 9 of the surviving babies will be disabled, they will continue to cost the NHS throughout their lives, so these figures are just the start of the cost of these babies to the NHS. 

- As Heather Rutherford explains in the film, the care these people receive is greatly reduced once they hit the age of 18

- In the film, I ask Ann Aukett, a community paediatric who looks after survivors, if she is able to give the survivors the care they need, and she categorically says no. Whilst making the film, I met a 23 week baby who was two years old and who had had to wait a whole year for a physiotherapy appointment. Which suggests to me that we are not caring for these babies properly once they leave hospital, even before they are 18.

- I also saw a baby who was most likely born in the 22 week (often it is not possible to date conception exactly), but had been resuscitated despite the guidelines. So as a nation we spent a few thousand pounds keeping a baby alive that would almost inevitably die, and yet we couldn't provide simple therapy for a child that modern medicine had allowed to survive, but disabled. 

 

CLAIM FIVE: Britain amongst worst premature birth rates in Europe

The European Perinatal Health Report  collected data from across Europe in 2004 and published it in 2008. The data for premature births under 32 weeks is on page 131. (Below 32 weeks, of course, isn't the same as 23 weeks but the data is not available for 23-weeks and choosing the later range does mean that the numbers are quite large, and therefore more accurate. As the numbers of below 32 weekers goes up, then so does the absolute number of 23 weekers.)

Percentage of babies born prematurely at 32-weeks or less, by country:  

- England and Wales, Hungary, Austria = 1.4% [Highest percentage]

- Germany = 1.3%

- Denmark = 1.1%

- Italy, Ireland, = 1%

- Sweden, France, Greece, Finland = 0.9%

- Spain = 0.8%

- Malta = 0.7%

In other words, Britain has about fifty per cent more babies born (per capita) in prematurity than some other European countries.

 

CLAIM SIX: Link between premature births and deprivation

The epidemiologists state the evidence the best: "the incidence of very preterm birth is nearly twice as high in the most deprived areas compared to the least deprived areas" (Socioeconomic inequalities in survival and provision of neonatal care: population based study of very preterm infants.)

But it seems very difficult to discover why it is that people in deprivation have higher incidence of preterm birth. Many reasons are being studied – including smoking, alcohol and non-attendance of pre-natal check-ups - but the answer is not yet clear. 

 

CLAIM SEVEN: Intervention levels increasing, but survival rates not

Towards the end of the film, neonatal consultant Anne Aukett explains that 23 week babies are enduring more and more medical intervention. How do we know this?

Going back to the Trent Study mentioned in Claim 2 above, looking at the table on the second page, it says that between 1994-1999 the average time that 23 week babies spent on the ward was 22.9 days. And then between 2000-2005 that number had gone up to 34 days. So babies now spend nearly an extra two weeks on the ward, during which time they have a variety of medical interventions – often including ventilators down their throats and needles into their arms - which cause some pain and discomfort. 

These extra two weeks of pain have failed to provide any benefit according to the Trent Study. 

A different cohort published last year came to similar conclusions. “Survival in infants live born at less than 24 weeks’ gestation: the hidden morbidity of non-survivors” concludes that "Over the last 15 years, increasing numbers of babies at less than 24 weeks have received active resuscitation. Overall survival has not changed, but non survivors have endured significantly longer durations of intensive care." This includes data up to 2007. 

 

CLAIM EIGHT: Outcomes not improving over last 15 years

Throughout the film – and these notes - there is the tacit idea that the evidence as outlined above gleened from reports over the last 15 years remains true. But perhaps the outcomes have radically changed in the last couple years. Perhaps there is some unpublished data which suggests that there is a radical new treatment that is prolonging the lives of 23 week babies.

The first thing to note is that these studies are really the best evidence we have. In all these cohort studies there is very limited data from this year or last year. Part of the trouble is that it takes time, years, to collect and assess the data. Frankly these studies much be a bureaucratic nightmare: just imagine trying to follow a couple of thousand people for years, when we all lead such transient lives. 

Another problem is that to really understand the outcomes we have to wait for children to grow up. The cohort of the EPICURE study is now only 16 years old. And, as with all of our lives, long term outcomes is vitally important.

But just to check that there were no new studies that would radically change our view, I phoned  Elizabeth Draper, the professor of perinatal and paediatric epidemiology at Leicester University. She is the lead statistician on both the big cohorts in the UK, EPICURE and Trent. They continue to collect data. I asked her whether survival rates for 23 week babies have increased in the last few years and she replied: not in any significant way. 

 

CLAIM NINE: Other countries have better survival rates? 

Well in fact this isn’t my claim. But it is often mooted on the radio and on discussion boards. People claim that the outcomes for Sweden or America are much better. If only Britain would do more doctoring then everything would be okay. 

Here is one of the studies that is sometimes referred to.  One-Year Survival of Extremely Preterm Infants After Active Perinatal Care in Sweden. 

This suggests that Swedish neonates have much better survival rates that in the UK. About 10% of 22 weekers survive, and about 50% of 23 weekers survive. 

I spoke to one of the authors, Professor Karal Marsal, about why this might be. Simply, he wasn’t sure. It might that the Swedes have different protocols on delivery, they might be more interventional in the delivery room. This is mentioned in the paper. But certainly another reason was the ‘background population’. 

Britain simply has a very different group of mothers giving birth to these neonatal babies than the Swedes. He said they have basically almost no teenage mothers, and yet that is one of the groups prone to preterm labour in the UK is just this one. And we have high rates of teenager motherhood. Also if you look at the Eurostat data cited above, about 17 per cent of British mothers smoke during pregnancy, whilst less than half that percentage in Sweden. Similarly, 91 per cent of Swedish women visit their doctor during the first trimester of pregnancy whereas only 65 per cent of British women do. 

It seems likely that if you have a more health aware and more active cohort of mothers, who give birth at much lower rates of prematurity, then the health of their offspring is also likely to be better. And therefore the survival of neonates born in extreme prematurity would be better. 

Professor Liz Draper also told me that comparing cohorts between countries is also very difficult. Sometimes it is difficult to compare like with like. 

The Price of Life, BBC Documentary

[vimeo 4796083 w=500 h=288]

The Price of Life from @adamswishart on Vimeo.

My film about NHS rationing was broadcast on BBC2 in 2009. It was the runner up for the Best Science Documentary at the Greirson Awards in 2010.

The previews were pretty nice.
'Adam Wishart's extraordinary, engrossing film deserves a prize.' Radio Times 
'deeply affecting... unsettling but vital and grimly fascinating' Mail on Sunday
'The documentary of the week' The Independent
'a fine if sombre film' Time Out
'balanced and thought-provoking' The Times
'Fascinating documentary' TV Times

 

The Unbearable Cost of Living

Barnett

The Sunday Times Magazine have published an article related to my documentary The Price of Life. 

The picture is of Professor David Barnett in a NICE (National Institute of Health and Clinical Excellence) appraisal meeting. He is the chair, and the committee is about to decide whether or not NHS patients should get a drug called Lenalidomide.    

If you're a journalist and might like to write about the film, email me at 
adam (a) adamwishart.info and I'll send you a link.

The Price of Life

Wednesday 17 June

9.00-10.00pm BBC TWO

On a finite budget, the National Health Service can't afford to offer patients every treatment on the market, so how does the nation decide which patients should be the winners – and who should be the losers? BBC Two has secured exclusive and unprecedented access to NICE (the National Institute for Health and Clinical Excellence), the controversial body that decides which drug treatments the NHS can afford. Its judgements have precipitated many bitter battles over the last decade but, for many, the people behind the process remain shrouded in mystery.

Focusing on cancer drug Revlimid, award-winning documentary-maker Adam Wishart follows those who must decide whether to approve the drug and those who will be affected by the outcome. They are: Professor David Barnett, chairman of the NICE appraisals committee, charged with assessing its effectiveness; cancer patients including Julia Gatt and Eric Rutherford, whose lives depend on the decision; Sol Barer, head of the American drug company that discovered Revlimid and profits from it; and NHS manager Sophia Christie, who has to deal with the financial consequences of the committee's decision.

The programme tells the compelling story of the people whose everyday lives are affected by this intricate process. Will Julia and Eric get the drug they need and, if so, will Sophia be forced to make cuts to her budget in other areas? The very human conflicts that arise open up for debate a bigger moral question – how much is life worth, and how much should society pay?

REACTION TO MONKEYS, RATS AND ME

Previews:
"[an] outstanding documentary... a fine piece of TV." The Observer.
"Riveting and revealing" The Sunday Times.
"Excellent documentary... Thoughtful television." The Guardian
"An intelligent and thought-provoking film." The Daily Telegraph
"[a] riveting documentary" Radio Times

In the News:
What Felix the Monkey Taught Me About Animal Research, Mail on Sunday Review
Father of Animal Activism Backs Monkey Testing, Sunday Times
Animal Guru Gives Tests His Blessing, The Observer

Reviews:
An outstanding documentary... One of the many triumphs of Adam Wishart's film was that it showed Broughton to be a skilled, passionate, articulate and charismatic leader..... the documentary remained clear-eyed and carefully unsentimental - about the rights of animals, about the rights of people, about the difficulty of engaging in rational debate with fanatical anti-vivisectionists and of drawing rational boundaries around the privileging of human comfort over animal. Lucy Mangan, in The Guardian.

Wishart brilliantly caught the essence of his “characters”: Broughton’s unyielding activism, Professor Aziz’s innate eccentricity, and the spooky steeliness of Laurie Pycroft, a teenager incensed by the antis, who having started a pro-testing website, went on to lead a march, the first of its kind in more than 100 years, through the streets of Oxford in favour of the new lab. In a wonderful moment, Wishart captured Pycroft being primed by one of his spotty teenage cohorts turned spin doctor. There was lots of sharp detail. Tim Teeman, The Times.

Monkeys, Rats and Me was a neat piece of work. The Telegraph

The Web:
"That Scottish lass I found particularly repugnant. Although I think actual violence would harm our cause, I wouldn't lose any sleep if a "lone nut" was stupid enough to... well, do nasty stuff in her environ. I am someone who genuinely loves rats - rats are god's creatures, sacred animals, the most humble of all beings - and consider people who cause them harm to be the worst sort of scum."
and
"I personally hope that aziz and pro-test 3*$*%^%( get harmed, violently by an ARA. And die a slow painful death. If I had a gun, and the location of their whereabouts and transport, I'd do it right fucking now."
LINK

Improve Performance, Rather than Search for New cures

I’ve just finished reading Better by Atul Gawande. Like his previous book, Complications, this one is full of humane and insightful observations about the complexities of medicine.

There is one particularly fascinating chapter about performance, and how you improve performance in medicine. He tells the story of cystic fibrosis. Medicine has remarkably improved the life expectancy of patients over the last thirty years or so. In the sixties patients made it to just ten years old, now most live into theri mid thirties with some patients living much longer.

Remarkably, Gawande makes the case that this wasn't only to do with better science, it has to do with better medicine. Part of the story is here, in the New Yorker.

We are used to thinking that a doctor’s ability depends mainly on science and skill. The lesson from Minneapolis is that these may be the easiest parts of care. Even doctors with great knowledge and technical skill can have mediocre results; more nebulous factors like aggressiveness and consistency and ingenuity can matter enormously.

But in the book version of the same essay he is more confident. And bolder.

"To be sure, we need innovations to expand our knowledge and therapies, whether for CF or childhood lymphoma or heart disease or any of the other countless ways in which the body fails. But we have not effectively used the abilities science has already given us. And we have not made remotely adequate efforts to change that. When we've made a science of performance – as we've seen with hand washing, wounded soldiers and child delivery – , however, thousands of lives have been saved. Indeed, scientific effort to improve performance in medicine - an effort that at present gets only a miniscule proportion of scientific budgets - can arguably save more lives in the next decade that the research on the genome, stem cell therapy, cancer vaccines and all the other laboratory work we hear about in the news. The stakes could not be higher."

It is a brilliant vision of a different kind of medicine, one that deals with the here and now, rather than hoping that there is a miracle cure in the future that we should all be waiting for.

Too Much Health

There is a fascinating and timely report about Hormone Replacement Therapy in the Guardian today.

Survey after survey has linked hormone replacement therapy to cancer, strokes, blood clots and heart disease. Why, then, are so many women so relaxed about using it? And why do some doctors insist that the dangers are exaggerated? Sarah Boseley investigates

What it reveals is the continued attraction of HRT, more than a million women continue to take it in the UK, although for some of those women its pretty clear that taking HRT is not the optimum intervention.

What I find interesting about this is how compelling medical solutions can appear and how enduring they can be once the public first accepts them to be true. Once an idea like HRT has been promoted in the public realm, and once there is promotion of various sorts floating around, then its very difficult to get the idea our of the public imagination. None of us seem very attracted to the idea that actually medical intervention is bad for you.

I think many of us are afflicted by it. We go to doctors because we think they can help us. And they sometimes fob us off with placebos or what they think is more or less harmless sorts of drugs and interventions, such as HRT.

Its linked to my favourite piece of commentary of the year. Published on January 2nd, some of the best analysts in the business simply state,

For most Americans, the biggest health threat is not avian flu, West Nile or mad cow disease. It’s our health-care system. You might think this is because doctors make mistakes (we do make mistakes). But you can’t be a victim of medical error if you are not in the system. The larger threat posed by American medicine is that more and more of us are being drawn into the system not because of an epidemic of disease, but because of an epidemic of diagnoses.

LINK

Although this is a particularly American problem, UK patients are also afflicted. We demand and demand and demand in some situations where doing nothing might be the right thing to do.

THE TERRIBLE STORY OF HOO LOO

This is one of my favourite stories from the book. Its also one of the goriest, the rest of the book isn't quite as bloody. The picture is from the original article - unfortunately it was never included in the book. So now the story has been mentioned in the NY Times seems good to publish it here.

Hooloo2

On Saturday 9 April 1831, a year before the passage of the Anatomy Act, but a few months after the opening of the world’s first purpose-built passenger railway, a crowd of men in top hats and coat-tails showed their ‘hospital tickets’ and entered the operating theatre of Guy’s Hospital in London. Hundreds of others jostled on the street outside. An attempt had already been made by the hospital authorities to prevent a scrum by moving the date forward by three days, but the tight, gossiping community of London’s doctors had defeated the ruse.

The patient in question was a 32-year-old Chinese labourer called Hoo Loo, who had disembarked at the Royal Docks from a sailing ship, a so-called East Indiaman, with some difficulty three weeks previously. He was carrying an enormous tumour four feet in circumference, which hung from his lower abdomen, enveloping his penis, to below his knees. It was ‘of a nature and extent hitherto unseen in this country’. Although the size of Hoo Loo’s growth made it exceptional, lumps, boils and malignancies were often seen to disfigure the human form in the age before routine surgery. Hoo Loo’s had been growing for ten years, but his doctors in Canton had refused him treatment. Because it had continued to grow, he had travelled for six months to London in the belief that there the art of surgery was somewhat more advanced and that the profession would have no such qualms in operating on him. On arriving at Guy’s Hospital he must have been aware of the excitement, for as he lay waiting for the operation his days were interrupted by ‘a great number of persons of all ranks’ keen to examine this oriental curiosity.

Because of the swelling crowds, it was announced that the operation was to be held in the ‘Great Anatomical Theatre’. A ‘tremendous rush’ ensued as 680 gentlemen pushed their way into the auditorium. Fifteen minutes later, Hoo Loo was carried in and laid on the dissecting table, which was still stained black with blood from previous guests. Two nurses tied his limbs to the table so that he would not be able to flinch from pain – there being no such thing as anaesthesia then – and Hoo Loo looked on, seeming to contemplate the operation with a fortitude ‘never exceeded in the annals of surgery’. The nurses then covered his face so that he might not see the imminent procedure.

Then entered Sir Astley Cooper, the greatest physician of his day, renowned for helping to embalm the body of King George IV, for stealing a dog for the purpose of vivisection and for having boasted to a parliamentary committee of his close relationship with bodysnatchers. Having been reprimanded once for arriving at the royal chamber wearing a morning coat still covered in someone else’s viscera, he was probably similarly attired on the day of Hoo Loo’s operation. Together with the surgeon, Charles Key, he decided that the operation should attempt to preserve the genital organs.

Mr Key stationed himself in front of the tumour and made the first incision just below the right side of Hoo Loo’s abdomen. With barely a groan or a gasp from the patient, Key continued for six inches down the right-hand side of the penis and around the tumour. ‘The quality which is considered of the highest order in surgical operations, is self possession,’ Sir Cooper had once lectured. ‘The head must always direct the hand.’ Key repeated the manoeuvre on the patient’s left side, connecting the two cuts below the base of the penis. Then Key lifted the tumour up, and cut around the urethra. The audience was silent, craning to see and hear Hoo Loo. Cutting veins, Key reached for silk threads to tie them, possibly holding the bloodied scalpel in his teeth, as was the practice. The patient ‘firmly set his teeth and resignedly strung every nerve in obedience to the determination with which he had first submitted to the knife’. After each incision, Hoo Loo was given some time to recover from the ‘fits of exhaustion’, as without anaesthetic the trauma of the knife was often almost as dangerous as the cuts themselves. Then, with ‘great neatness’, Key attempted to cut around the penis in order to separate the tumour. As more than a hour had passed since the first incision, cooper began to worry that its protraction was detrimental to the patient, most other operations being over in a few minutes. So he insisted that the operation be completed as quickly as possible by sacrificing the genitals.

Hoo Loo was drifting in and out of consciousness. The nurses rubbed his toes and injected brandy into his stomach in a bid to keep him awake. But already a pint of Hoo Loo’s blood had been lost, some of it congealing around the operating table. Students in the audience offered to give their own blood for Hoo Loo’s life, and a transfusion of a quarter of a pint had been attempted. Key continued to cut and, one hour and forty minutes after beginning, he freed the tumour from the body. It weighed fifty-eight pounds. With a final gasp, Hoo Loo collapsed into unconsciousness. The doctors sensed his heart ‘gradually and perceptibly’ sinking. Then he died.

The following week, the medical journal The Lancet criticised the surgeons for killing Hoo Loo, reasoning that his operation had taken place too early – before he had the opportunity to acclimatise to the British weather – and because his vital force had been constricted by the lack of air in the room. In the following weeks, its correspondence columns also criticised sir Astley cooper’s recklessness. ‘I think that this operation could neither advance science of surgery,’ wrote W. Simpson of Hammersmith, ‘nor be otherwise beneficial to the human race; that it was neither sanctioned by reason, nor warranted by experience.’

Hoo Loo was an extreme example of the brutality, and often futility, of surgery in the early nineteenth century. Even the relatively simple excision of a breast tumour created a ‘terror that surpasses all description & the most torturing pain,’ wrote the novelist Fanny Burney. ‘When the dreadful steel was plunged into my breast – cutting through the veins, arteries, flesh, nerves – I needed no injunctions not to restrain my cries. I began a scream that lasted un- intermittingly during the whole time of the incision – & I marvel that it rings not in my ears still!’

In general, operations were to be avoided, and were only carried out when a tumour had become so enlarged or was bleeding so profusely that it was imminently threatening life.

JANET MASLIN REVIEW - NEW YORK TIMES

"Mr. Wishart reports that during his years of writing and talking casually about cancer, he had a horrifying effect on others. Hearing him, listeners would shiver or quail or walk away. But his book does not prompt that kind of response: Mr. Wishart has done copious research and used it to shape a story more gripping than frightening ... [he] remains too erudite and civilized to succumb to fear."

How good is that?
LINK

Salon.com Review

The wonderful Andrew Leonard at Salon has written the first American review of the book.

"Wishart's genius is in combining the wrenching story of his father's cancer with the broader medical history of humanity's struggle to understand and treat the hydra-headed disease. ... To provide hope to others in the midst of his own sorrow is a marvelous achievement: "One in Three" is a fine piece of work."

LINK (its free, you just have to watch the ad)