Why face transplant research is important – and, more power to Oscar!

The Times carried a moving interview yesterday with the surgeon, Dr Joan Pere Barret, who carried out the world’s first full face transplant a year ago on ‘Oscar’. Some might say it was a pity it was not with Oscar himself but I fully respect his desire for privacy as he comes to terms with his completely new face – and all the risks associated.

Oscar’s injuries were from an accidental gun shot and if you look at the internet images of the damage, you can understand why “(for 6 years) he never went out because he was worried about people laughing at him” according to his surgeon.

The face transplant has undoubtedly given him a new lease of life in functional and aesthetic terms and you can understand why he decided its benefits outweighed the risks that the transplant may be rejected or that the heavy lifelong immuno-suppressant regime might have horrible side-effects or reduce his capacity to fight off infection or cancer and so reduce his life expectancy.

As more of these important transplants are proposed and conducted, I found myself reflecting on two aspects of this man’s case:

First about the similarity between the gunshot wounds that Oscar and another transplant patient, Connie Culp have endured and those of the first patients of modern-day facial reconstructive surgery, those injured in the trenches of the First World War.

Another book in the genre exploring those days, following Marc Dugain’s The Officer’s Ward (also a fine film), Pat Barker’s Life Class and The Crimson Portrait by Jody Shields, came out this week by Louisa Young called My Dear, I Wanted To Tell You. It takes the reader to the now extinct hospital, St Mary’s Sidcup where Harold Gillies performed so many facial surgeries.

But the second point is that many of those real men and women like the Italian guy with gunshot wounds I shared a ward with back in the 70s were supported and enabled, despite their less-than-perfect surgical repairs, to face their worlds again.

It grieves me to read that Oscar spent 6 years in isolation. I passionately believe that he – and many other patients worldwide who may be waiting for transplants (or not) – should be offered immediate help to enable them to emerge from that isolation – or better, never to go into it in the first place.

And, indeed, despite his new ‘improved’ appearance, Oscar (and the others) will still need help (I suspect) to learn how to manage (the fear of) the reactions of other people to him in all sorts of social encounters, small and big.

This is one reason why psycho-social professionals should be present as core and essential members in all clinical teams dealing with patients who experience facial conditions that affect their appearance be it after trauma, cancer, warfare, stroke, birth conditions or any other cause, even what might be thought of as ‘quite minor’ (but rarely is to the person whose face is affected). It is also where the cognitive and behavioural approach pioneered by Changing Faces and now in play in many hospitals is so crucial.

I described that approach in brief at the end of my blog on 16.3.11 but, to come back to Oscar, I would want him to have now – and to have had before – a social skills mentor who could help him understand how others are likely to experience meeting him and to devise and practise how he will – pro-actively and robustly – handle such reactions in the future.

More power to you, Oscar!

Why we need strong laws

I have just received a press release from the Crown Prosecution Service in Greater Manchester with the headline: “Woman sentenced for disability hate crime attack”.

This is a case which Changing Faces has been involved with because people with disfigurements are far too often exposed to public ridicule – and this was a bad case. It is excellent news to see that the Judge agreed to the Prosecutor’s case. I salute Chantelle Richardson for taking the case all the way and congratulate her with the successful result.

It will be very interesting to see the outcome of the formal enquiry into disability-related harassment by the Equality and Human Rights Commission and how this relates to hate crime which is a criminal offence and should be reported to the police.

For the sake of clarity, people with disfigurements in Britain are protected from harassment and unfair treatment by the Equality Act which also obliges public bodies to have all the necessary systems in place to prevent it happening. The safety and security of disabled people is a basic human right.

I am quoting the Press Release in full including the helpful ‘Notes to Editors’:

“Prosecutors today successfully applied for an increase in sentence for a woman who attacked another female in an Oldham pub simply because she has a facial disfigurement.

Rachel Rooney, 31, of Capesthorne Drive, Oldham, taunted Chantelle Richardson – 22 at the time – about her appearance whilst in The Weavers Arms in Shaw on 4 September last year, before then punching her, causing her nose to haemorrhage.

Chantelle has a condition called Arteriovenous Malformation from birth which results in irregular connection of high-pressure arteries and low-pressure veins in the nose. Trauma to the nose could lead to bleeding, which in turn can cause severe or fatal strokes and, in Chantelle’s case, even death.

Speaking following the sentence, Rebecca Radcliffe, Crown Prosecution Service (CPS) lawyer, said: “This was a completely unprovoked attack on a young woman who was simply minding her own business and enjoying the company of her friends.

“In our view, Rooney’s actions were clearly motivated by hostility towards Chantelle’s disability. As such, when this case was reviewed, it was identified as a disability hate crime: namely a crime perceived to be motivated by, or where there was a demonstration of, hostility based on a person’s disability.

“Under Section 146 of the Criminal Justice Act 2003, the CPS asked that the court consider an increase in sentence for Rooney, who admitted a charge of assault occasioning actual bodily harm at an earlier hearing. The Judge decided that Section 146 did apply and jailed Rooney for eight months.”

Ms Radcliffe added: “No-one should be subject to the violence and verbal abuse that Chantelle experienced. The CPS has clear policies on dealing with disability hate crime and will continue to work with our partners in the criminal justice system to make it clear that they have no place in our society.”

NOTES TO EDITORS:
There is no legal definition of a disability hate crime. However, when prosecuting cases of disability hate crime, and to help us apply CPS policy on dealing with such cases, we adopt the following definition:

“Any criminal offence, which is perceived, by the victim or any other person, to be motivated by hostility or prejudice based on a person’s disability or perceived disability.”

Safety and security and the right to live free from fear and harassment are basic human rights. Our policy is to prosecute disability hate crime fairly, firmly and robustly.

¹For more information on Disability Hate Crime and Section 146. please visit:
http://www.cps.gov.uk/publications/prosecution/disability.html

40 years on…

Against the backdrop of the ghastly catastrophe unfolding in Japan, I have been marking this week a huge date in my calendar – the moment 40 years ago when I understood the much tinier but nevertheless devastating catastrophe which had befallen me.

On the Ides of March 1971 (15.3.71), I looked in a mirror for the first time after my accident 3 months previously – and from knowing myself as a good-looking 18-year-old guy with prospects, I came face-to-face with a disaster area which, it was very hard not to think, could only hold a very tarnished and unhappy self.

The photo tells only a part of the story because (a) it is black-and-white, and (b) it was taken two months after my day of reckoning when my face was still bloody scabs, vivid redness, and ghastly distortion.

Look carefully and you may see the tell-tale signs of doubt, grief and pessimism – I felt all of these as I scanned across that face and I just could not imagine how I could ever get my life back – any kind of life, frankly…

Five years of brilliant 1970s surgery created the face I now wear with pride but it was what went on outside hospital as I struggled to become a fully-included citizen and not an outsider, a horror-movie villain nor a just a lifelong patient, that really counted for me

I have also been touched this week, as I suspect many have been, by Katie Piper’s recovery story from her acid attack – and this will probably grow as her TV series rolls out over the next few weeks. She is admirably showing others with burns, perhaps less severe than hers – and indeed those with other facial conditions – that a good future can happen.

And she’s also doing what Simon Weston’s TV story did so well in the 1980s – raising public consciousness of what it’s like to have a facial disfigurement. I salute her.

My role models in the 70s were Battle of Britain fighter pilots, the ‘Guinea Pigs’ of McIndoe’s making. How I would have loved a Katie figure!

I wish her well too with her fund-raising for the new rehabilitation clinic modelled on the one she attended in France with full-on hydrotherapy, scar massaging and much else plus, of course, an atmosphere of acceptance and restoration for the burns survivors who attend it. And I look forward to working out how Changing Faces can support and work with her and her team.

What lessons are there from all this, 40 years on?

First, I discovered – and Katie’s quiet praise for her psychologist confirms she has too – that adjusting to living with a facial or body disfigurement of any sort, whether from birth, trauma, cancer, paralysis or skin condition requires a whole raft of support and help. I had no psychologist and I hugely admire Katie’s but there are very few in NHS settings supporting with patients with disfigurements outside the burn care and cleft lip and palate services.

So the psycho-social help and empowerment which Changing Faces provides and advocates for to be routinely provided in the NHS is just as important – some would say, even more important than – the vital reconstructive surgery and physical therapies people need.

Much of my work over the last 19 years with Changing Faces has been dedicated to creating a psycho-social package that is as effective as it possibly can be.

There is much more on our website about what we offer but in a nutshell, that package enables people who are unhappy with the way they look to find sensitive, constructive, practical help.

So if they feel as if they have no control over their condition and its treatment, we help them to ask the right questions and get control.

If they cannot see any future, no chance of a relationship or a good job, we help them challenge those beliefs and meet others who have found happiness and success – it is possible.

If they want to express and resolve their feelings of sadness, grief, loss of identity and sexuality, we give them that chance.

If they want to meet others who are going through similar challenges, we arrange workshops and events…

And crucially, if they are tired of the unwanted attention or self-conscious about their looks, we enable them to develop new social skills to deal with that and meet new friends and much more!

Our professional team here at Changing Faces is helping hundreds of people and families every year do this adjusting successfully and we need to make it much more available in the future.

Secondly, more personally, I believe in hope… or perhaps as an old guru of mine, Harry Williams named his book back in 1972 in ‘true resurrection’. Out of the deepest adversity with all its losses and grief can emerge, very gently and uncertainly like the little spring shoots and flowers emerging in the parks and my garden, tiny shoots of new life.

That’s what I found, nurtured by my family, the lovely hospital staff who cared for me and my friends – and I offer a little prayer of hope for all those whose lives appear wrecked by this week’s events…