Face transplantation 10 years on…

Isabelle Dinoire

Isabelle Dinoire pictured in 2009

Hats off to Isabelle Dinoire! Ten years ago today, she signed the consent form to receive the world’s first face transplant – and I wished her well three days later when she appeared in front of a massive press conference – and I wish her well again today.

She deserves the gratitude of people with severe facial disfigurements because she was willing to take what the Royal College of Surgeons’ Working Party in November of the following year called ‘a leap into the dark’.

Of course, not that many people have been willing to take such a leap but around thirty have done so worldwide. Some of the transplants have been immense undertakings involving skin, bone, muscle and much more. Sadly, some patients have died – one at least because they failed to conform to the immune-suppressant drug regime; others probably because the graft has failed.

But most patients survive – and some have told their stories in graphic detail expressing gratitude to the donors’ families and the surgical teams – see the New York Times and The New Yorker in 2012, for example, and this week’s interview on BBC Newsnight and this from a Polish man.

Ten years on, I think several things are clear:

First, that face transplantation is still in its research phase but is proving itself as a very effective method in the surgeon’s armoury for dealing with the functional and aesthetic issues posed by severe facial disfigurements from traumatic and other causes.

Second, that the very complex and highly individualistic challenges of preventing graft rejection and designing effective immune-suppressant drug regimens are being tackled – but there is little public knowledge about patients’ experiences.

Third, that the psychological and social benefits have been well-expressed by those who have gone public – but I continue to be concerned about the quantity and quality of the pre- and post-transplant psycho-social support to both the patient and their family.

Fourth, patients can take on another’s face but their sense of identity is not easily regained – as Isabelle herself expressed in 2008: “It’s not hers, it’s not mine, it’s somebody else’s… Before the operation, I expected my new face would look like me but it turned out after the operation that it was half me and half her… It takes an awful lot of time to get used to someone else’s face. It’s a peculiar type of transplant.”

Fifth, whilst some donors’ families have been willing to go public, I worry that donor family support and privacy have not been given as much attention as they merit.

And sixth, and finally, the media coverage has raised public awareness that face transplantation is a remarkable procedure that can offer improved appearance and functioning for people with severe facial disfigurements – but it is not a magic wand.

In the month after Isabelle Dinoire’s leap-taking, I wrote to the president of the Royal College of Surgeons of England to ask that he and the RCS Working Party update its 2003 report on face transplantation (which had been very hesitant). Last night I re-read the outstanding 2006 report and marvelled at its wisdom – it is the most informed public document about face transplantation and established the highest ethical benchmark for British research teams.

One of my concerns as face transplantation becomes a frequently-used procedure in the next decade is that inexperienced clinical teams will ‘have a go’ – and I think there is a risk that the learning by research teams is not being shared as widely and fully as it could be. I am going to write to Clare Marx, the current President of the Royal College and to her counterparts in the US, France and possibly other countries to suggest that they combine to commission an international review.

But let me repeat: Hats off to you, Isabelle! I shall raise a glass to you this evening!

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Doing good

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L-R Jayne Woodley of Oxfordshire Community Foundation, James Partridge, John Nickson

A great evening at the Oxford Union last week! So fascinating to be part of an ancient debating tradition that goes back to Gladstone who was President of the Union in 1830. I stood at the despatch box – opposing the motion – on the same boards as many giants of the political world and wider society of the past 185 years.

It was all done in a very formal process conducted under the watchful eye of Charles Vaughan, the President of the Oxford Union in his white tie and tails.

Those supporting the motion, James Bevan of CCLA, Nigel Mercer, President of the British Association of Plastic, Reconstructive and Aesthetic Surgeons and Sali Hughes, beauty writer and columnist constructed some formidable arguments to support the spending of money on ‘looking good’.

It has economic value, of course – providing employment for millions of people and much scope for charitable giving to medical research and other good causes. And no-one could dispute that the skills of plastic surgeons can improve a person’s looks… and I, for one, do not object to that provided the patient – or customer – has been given realistic information about the risks and benefits and has been told of other ways of gaining self-esteem.

The debate was really about the balance of society’s spending as Professor Danny Dorling and John Nickson and I tried to explain – and with the certainty that the state will be withdrawing from many areas of civil society in the years ahead, there is a real and urgent need to re-balance our priorities towards ‘doing good’.

There were many examples of how that spending could make a difference – but my one regret is that the nine-minute rule for all speakers prevented us elaborating on why such spending, giving or volunteering can make such a difference.

I am immensely proud of the work of Changing Faces’ staff, volunteers, ambassadors and many other people who have been transforming the lives and future prospects of anyone who experiences a disfigurement as I did years ago from severe burns at the age of 18 – and you can read about most significant impact in the last year on our website. My next blog will cover what we are seeking philanthropy for.

Lastly, a big thank you to my supporters for coming and cheering – and to the Oxfordshire Community Foundation for organising such a treat!

Events in Paris and London today

My heart and prayers go out to everyone in France who are trying to come to terms with last night’s ghastly events in Paris. We at Changing Faces are ready to do anything we can to help those injured and their families and we are with all people who stand for freedom and democracy.

Today, I will be in north London marking 40 years of an amazing service which has its roots in the aftermath of the fight against tyranny and barbarism in the Second World War, and so want to assert strongly that from these atrocities can come seeds of good.

The Skin Camouflage Service was created by the British Red Cross at the request of the Department of Health in 1975. In 1975, a nationwide survey of dermatologists highlighted the psychological and social effect of disfiguring skin conditions. The survey found that, while few skin problems are life-threatening, visible conditions – such as vitiligo, rosacea and scarring – could cause great distress and adversely affect almost every aspect of a person’s life.

Joyce Allsworth was appointed to develop the training – and Joyce was a pioneer in skin camouflage because she had been working with companies like Veil, Covermark, Max Factor and Elizabeth Arden in the 1950s and 60s, and they had been inspired, at least in part it is likely, by Sir Archibald McIndoe, the great plastic surgeon at Queen Victoria Hospital, East Grinstead. The patients he treated in the wake of the Battle of Britain and subsequent warfare came to be known as McIndoe’s Guinea Pigs.

Today the Skin Camouflage Service is an integral part of what Changing Faces offers to help people with any kind of disfigurement – from birthmarks, skin conditions, burns or scarring from accidents and violence – to gain self-confidence and self-esteem.

 

Around 5,000 people a year are referred to the service by dermatologists, GPs, plastic surgeons and others – and are advised by our highly-skilled Skin Camouflage Practitioners about the best cream to use – from 150 options on the NHS prescription list – according to their skin colour, type etc and how to apply it. They can then get a GP to prescribe the product – and the feedback we get is that this can be life-changing for many people. You can find out a lot more on our website.

My hope is that this little bit of history can light a tiny ember of hope into the gloom that last night’s events will inevitably produce.

Better to spend more on looking good than doing good?

On Tuesday 10 November, I spoke in a debate at the Oxford Union, organised by the Oxfordshire Community Foundation. This is the text of my speech.

The motion for debate: “This house believes that there is nothing wrong with spending more on looking good than doing good.”

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Good evening, Mr President, Ladies and Gentlemen,

As you will observe, I have come dressed in a fine £150 suit, an elegant shirt from the Charles Tyrwhitt range, a tie out of the top drawer, shoes from Russell & Bromley, and hair styled by Toni and Guy. Total price £250. I enjoy wearing good-looking clothes – but I have no interest whatsoever in owning lots of them – and I’m hopeless at choosing which.

But that’s not important is it, compared to my face. Not pretty. Not looking good? Could do better? Severe burns at 18 made my life here as an Oxford student in the early 1970s extremely challenging. Hundreds of thousands of pounds of taxpayers’ money through the brilliant NHS were spent on getting my face to ‘look OK’.

But not good enough, of course. Because as prevailing orthodoxy would have it, without a good-looking face, I am doomed to three nasty effects: I won’t feel good inside, I won’t be liked by others and, with scars as good/bad as mine, I’m likely to live life in the shadows. I would be well-advised, you might say, to spend a lot more on ‘looking good’ – certainly much more than I do now! Not just on moisturisers but on major reconstructive and cosmetic surgery, perhaps even on a face transplant.

We live in a culture which has swallowed, hook line and sinker, the theory that ‘looking good’ brings big rewards. It also imposes a nasty stigma on people like me whose face doesn’t fit the norms of the day which is profoundly unfair.

In this culture, we are bombarded daily with slickly presented messages which tell us why spending massively on ‘looking good’ is not just good for our psyches but absolutely vital for them. If we don’t aspire to the spotless, wrinkle-free, age-less norms of appearance, our sex lives will be poorer, our self-esteem lower and our job and career prospects diminished.

The facts suggest that over 50,000 people spend £0.5bn on cosmetic surgery and that in all, £70bn each year is spent on ‘looking good’. That’s over £1,000 per person in the UK.

So on generous assumptions and including the cash-value of volunteering, £35bn a year is expended on – or given to – doing good. About half of what is spent on looking good. And by less than the half the population.

So why am I against spending of so much – and certainly any more – on looking good? For three reasons:

First, because I think the link between ‘looking good’ and being successful, feeling good and being loved is far more tenuous than is claimed and can be positively dangerous.

I work with many psychologists and they confirm that self-esteem and self-confidence are hard to acquire for most of us. Research suggests that parental support, academic achievement and the development of skills in sport, art, theatre and many other ways all combine with the quality of friendships, especially in adolescence to create our sense of self-worth. But some people’s self-esteem is heavily dependent on their looks.
Self-confidence too is gained by your ability to manage the many social encounters you have. That means your social skills have to be pro-active and your ability to deal with the judgements of others robust and resilient.

Do looks matter? Yes, of course they do… in the first five minutes of a new encounter, people do take a note of what you look like. But as Professor of Social Psychology, Michael Argyle of this great University showed years ago: when we meet someone, our first impressions are 54% determined by their overall appearance, dress etc, 34% by their gestures and body language, 8% by what they say and how they say it, and 4% by their face.

So looking good does matter but the idea that after those first five minutes, your facial looks – not your facial expressions or the quality of your eye contact – matter more than a little bit, I dispute. Sexual chemistry too is not about superficial face-value judgements – No, it’s a whole body, mind and spirit experience.

Incidentally, if you want a crazy sort of proof that there is not a very reliable correlation between ‘looking good’ and happiness, have a look at the Hollywood divorce statistics!

But psychologists also tell us that the over-zealous search for looking good has very dangerous unintended consequences. Some of those who strive to get a perfect body image do so at a severe cost to their own health. The epidemics of eating disorders, over-exercising, body dysmorphic disorder and self-harm are all obsessive behaviours designed to achieve or reacting to a frustrated search for an illusory perfect good-looking body. Research by Girlguiding found that one in five girls aged nine to 10 said the way they look makes them feel most upset, and 39% of girls say they experience demeaning comments about the way they look every week.

These are the unacceptable social costs of our ‘look good’ economy imposing massive costs on the health system most of which are preventable. The culture promoted by ultra-thin models and air-brushed faces is dangerous and needs countering. The ‘look good’ and ‘eat lots’ economy is unconstrained. Commercial pressures are hard to resist.

So there is definitely something ‘wrong’ with spending on ‘looking good.

Second, I dislike a culture which believes that looking good is not just a nice-to-have but also makes you morally good too. Research shows that many people believe it. Which is hard enough to swallow. But it’s the flipside which I detest.

Our culture perpetuates the nasty stigma that looking ‘not good’, with facial scars especially, means you are likely to be immoral, a villain, a weirdo. This lazy and nasty equation is seen not just in Bond and Elm Street films but in children’s online games too. The baddies in Moshi Monsters have names like Freakface and Fishlips who is characterised as a ‘one-eyed blob of badness’. Last week Children’s BBC gave Guy Fawkes a facial scar that – according to a Fawkes biographer – he never had.

Guy Fawkes with a mysterious facial scar - his leading biographer says there's no record of that scar.

Guy Fawkes with a mysterious facial scar – his leading biographer says there’s no record of that scar.

Encouraging spending on ‘looking good’ legitimates children in schools today being ridiculed because of their scars or birthmarks. We want our culture to respect ‘face equality’ just as race equality is coming to be.

But the third and strongest reason why I am against spending so much – and more and more – on looking good is that the monies could be put to so much better use.
Although when you watch BBC Children in Need this Friday and Comic Relief you might not think so, altruism, philanthropy and volunteering are all in retreat at a time when the need for them are rising.

With the state pulling back from so many areas of life and with more severe austerity cuts in the offing, charities are facing increasing pressures on their services – and there are so many causes to which people could give to or devote time to ‘doing good’.

Which can work miracles to people’s self-esteem and self-confidence. By volunteering to support elderly people in their neighbourhoods, getting a team together to raise sponsored money for a good cause, or finding out about how women survive after acid attacks in India or Britain and raising funds for their rehabilitation… All great ways to feel good… that you are doing something worthwhile.

So, Mr President, I strongly oppose the motion tonight: there is a great deal wrong with spending more on looking good than doing good – it is dangerous, allows stigma and prejudice, and is a waste of money. We are all the poorer because of our society’s excessive search to look good.