But I have been concerned that the main reaction from the medical profession has been to focus on the need to a registry of implants – that is apart from the plastic surgeons’ association which has taken a very sensible line: http://www.bapras.org.uk/news.asp?id=947.

I think the Health Secretary needs to broaden his perspective: the entire cosmetic surgery and beauty therapy industry carries serious risks for millions of women and many men.

There have been enough warnings of an impending crisis – the latest angst about the implants and anti-ageing fillers adds to that raised by the National Confidential Enquiry into Patient Outcomes and Death (NCEPOD)’s Report in autumn 2010: http://www.ncepod.org.uk/2010cs.htm. This showed alarming variations in the practice of cosmetic surgery and a pervasive lack of adequate regulation of facilities, training and delivery of treatments.

Of particular concern to Changing Faces are:

• the lack of expert assessment of client’s motivation and psychological wellbeing prior to any treatment
• the big gaps in the provision of realistic advice and information about its possible risks and outcomes.

It is abundantly clear that currently, many patients cannot be assured that they are receiving an appropriate level of care. Psychologically vulnerable patients are at risk of not receiving the level of specialist care they need – as Changing Faces (and other agencies) know only too well from our clients.

The last Government called for a Chief Medical Officer’s review and got it: see the Report on the Regulation of Cosmetic Surgery, 2005: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4102046?ssSourceSiteId=ab

But that Government then baulked on the strong actions needed to tackle the risks to public health and prevent the private grief and the economic toll. These included action to regulate who can practice ‘cosmetic surgery’ and how to ensure their skills are suitable; how to protect patients – or are they customers? – from making uninformed decisions about risky operations, implants and fillers; how to outlaw hyperbolic advertising; and how to properly regulate the many laser, botox and other treatments that are outside the scope of the Care Quality Commission.

I challenge this Health Secretary to see the big picture in the interests of us all.

There have been some great stories broadcast on our screens – TV, iPad and computer – and I salute everyone who has has committed to conveying those crucial messages…  such as:

• Jono Lancaster, a great guy with a condition called Treacher Collins syndrome who has already made some eye-opening and very pragmatic films about surgery and his childhood, http://jonolancaster.com/about-jono
• JR Martinez, the American war veteran who won Dancing with the Stars, the US version of Strictly – he’s opened so many minds to the possibilities rather than the downsides of getting major facial scarring and is about to become a parent! http://www.knowjr.com/
• Adam Pearson and Katie Piper for fronting up two very powerful Channel 4 TV programmes in early 2011 – ‘Beauty and the Beast: the Ugly Face of Prejudice’ and ‘Katie: My Beautiful Friends’. Both on at prime time, mainstream TV in the UK, these documentaries opened up the dilemmas and personal insights involved in looking unusual in today’s look-perfect society – more power to everyone who appeared in them…

And it was great to see the Time magazine photo of Bibi Aisha win the World Photo of the Year for 2010 too http://www.guardian.co.uk/artanddesign/2011/nov/20/photography-jodi-bieber-best-shot?INTCMP=SRCH

For me, 2011 has seriously tested the essential optimism that I have and you have to have to run a growing charity in austerity Britain but I am pleased to say that it has been considerably affirmed by the support of lots of new and long-standing donors – big thanks to you/them all!

And I have realised too how much my overall optimism has been nurtured by seeing hope in little everyday moments. Like the twinkle in the eye of the supermarket check-out assistant with an unusual face as I thanked her for my change – she was clearly living life to the full, unphased by and managing other people’s reactions with great aplomb. No need for our ‘Handling other people’s reactions’ guide http://admin.changingfaces.org.uk/downloads/Handling%20Reactions.pdf

Or the parent who calls to seek advice about their daughter’s face and prospects after she’s injured in a nasty car accident – and sounds reassured and strong after the call…

Looking ahead, 2012 will mark 20 years of Changing Faces – and we hope to make it a launch pad for the next chapter… a charity with a powerful local presence in the UK and an influential agent for change internationally. More anon…

A Happy and Hope-full New Year to all!

“Sticks and stones

May break my bones

But words will never hurt me.”

I am so old that rote (mindless) learning was still in vogue but Wikipedia tells me that it goes back much before my childhood and may have misled generations of children:

“Sticks and Stones is an English language children’s rhyme. It persuades the child victim of name-calling to ignore the taunt, to refrain from physical retaliation, and to remain calm and good-natured. The phrase is found at least as early as 1872, where it is presented as advice in Tappy’s Chicks: and Other Links Between Nature and Human Nature, by Mrs. George Cupples”.

What nonsense! It goes on:

“This sentiment is reflected in the common law of civil assault, which holds that mere name-calling does not give rise to a cause for action, while putting someone in fear of physical violence does.”

No wonder with laws like this we have allowed verbal abuse and harassment. My view – and I suspect there is good evidence out there (please send me it) – is that words hurt at least as severely and often in a more long-lasting way than physical abuse.

You only have to see the totally justifiable outrage to online abuse to see how just ‘little words’ can have nasty big impacts – and add more volume to the clamour for their banning. So this year’s Anti-Bullying Week theme, “Stop and think – words can hurt”, is very pertinent and well-timed.

This is what is reported to Changing Faces by hundreds of children and young people whose faces (or bodies) look unusual, different or supposedly do not match up to the ‘expected looks’ of today. Lucas’s story is just one of them – see his disclosure on our website and its advocacy on The One Show.

We call this ‘appearance-related bullying’ and I suspect it is extremely widespread – not just affecting people with disfigurements. The Anti-Bullying Alliance has some research that indicates that 9 out of 10 children aged 11 and 16 have either been verbally bullied or witnessed it happening to others in the past year.

This statistic suggests that today’s appearance-obsessed culture makes every child liable to be bullied at times but at other times to be the bully – and that goes for adults too. Appearance is very often the peg – the stigma – on which the verbal abuse is hooked. Red hair, fair hair, skin colour, freckles, weight (too much or too little), height (too much or too little), nose (too…) – the list goes on and most children will admit to either being picked upon or picking using some nasty ‘little words’.

Anti-Bullying Week challenges us all – teachers, journalists, comedians, marketeers and advertisers, parents, children and young people. Words can hurt, even very little ones.

Given the immense diversity of disability, it was not possible for the Report to describe all the health conditions that give rise to impairments, including those affecting the face nor how the interaction between people with these conditions and the social attitudinal and environmental barriers can “hinder their full and effective participation in society on an equal basis to others”. Nor could the proven interventions to remove these barriers and to empower individuals be referenced.

For example, recent evidence suggests that many of the 1.3 million people with a condition, injury or marking that affects their appearance in Britain are effectively denied opportunities to work. Over a third of the people recently surveyed said they had avoided applying for particular roles, because they feared others would have a negative reaction to their appearance.

In the spirit of the Report, Changing Faces is determined to continue working hard to ensure that public and employer attitudes towards people with unusual-looking faces are inclusive of all – and the good news here is that 35 major employers with a combined workforce over 1 million people have committed to embed ‘face equality’, to ensure that everyone is treated fairly and equally irrespective of their appearance.

But that’s not all. It is also of critical importance that people with an unusual appearance get the right information, support and social skills advice, at the right time. That’s in very short supply except through Changing Faces and some islands of good practice in the NHS. We will look to the new Clinical Commissioning Groups to ensure much improved access throughout the country.

Jono Lancaster and his girlfriend were seen tackling their special subject “So What If My Baby Is Born Like Me?” – watch it on iplayer before next Tuesday http://www.bbc.co.uk/iplayer/episode/b010n37y/So_What_If_My_Baby_Is_Born_Like_Me/ – and it clearly attractive major national attention (http://www.bbc.co.uk/news/magazine-12987504).

 Of course, some may have decided to give it a miss thinking ‘not another programme about disfigurement’ – because Jono has a rare condition called Treacher Collins syndrome – but they missed the challenges faced by many couples in working out when and how to conceive a child. In their case, Jono and Laura, took us on a journey into genetics, IVF, surgery, bullying, adoption, childhood surgery and high tech medicine in the living room – and it was compelling watching as they pressed each other to confront the choices…

 And for me, perhaps, the best thing was the normalising of this man’s – couple’s – internal (now very public) debate. They met other couples with other genetic conditions struggling with their choices – and the consequences… Jono’s ‘disfigurement’ was not incidental but just another health condition – as Laura referred to it – with some lousy effects which he had learned to master. Hats off to them both!

 One tiny incident though that made me even more determined to make our package of help much more accessible was the delightful dialogue between Jono and a young boy with the same condition about to go to high school. “What will you do if people look or ask?” posed Jono… and the young lad did not seem to have ready answers. He needs to have…

As a starter, we have a series of self-help guides – free to those with unusual-looking faces:

http://www.changingfaces.org.uk/show/feature/Resources-for-children-and-teens – and teachers can do a lot to help:

http://www.changingfaces.org.uk/show/feature/Teachers%27-publications-and-resources

]]> http://jamespartridge.wordpress.com/2011/04/21/good-old-factual-tv/feed/ 1 jamespartridge http://jamespartridge.wordpress.com/2011/03/31/why-face-transplant-research-is-important-%e2%80%93-and-more-power-to-oscar/ http://jamespartridge.wordpress.com/2011/03/31/why-face-transplant-research-is-important-%e2%80%93-and-more-power-to-oscar/#comments Thu, 31 Mar 2011 13:07:44 +0000 jamespartridge http://jamespartridge.wordpress.com/?p=106 ]]> 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!

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

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…

Can we be optimistic?

“Well, on the one hand… and on the other”, I can hear the economist (in me) going… But I have to make some decisions, for example about the likely success and fund-ability of our Face Equality campaign!

On the one hand, the public debate about cosmetic surgery and air-brushing have never been louder, both being vilified in the press over the weekend as a result of the Channel 4 series, Beauty and the Beast: the Ugly Face of Prejudice – on again tonight at 8pm or available for replay for a month via the Channel 4 website – see The Sunday Telegraph (http://tinyurl.com/4lk4s29) but also because of the ghastly death of the woman having buttock surgery and the run-up to London Fashion Week.

Will this rising clamour make it easier for us to gain funding for the continued roll-out of our Face Equality campaign? I think it may do…

But, on the other hand, cosmetic surgery, freely entered into with fully-informed consent (including taking in the significant risk that every surgery carries) is perfectly acceptable and might be on the rise as a recession looms as people try to sustain their looks in what they perceive, rightly, will be an increasingly competitive labour market. Looks do count, especially in the first few minutes of any meeting – but employers are not fooled surely any more? It’s competence to do the job that counts far more – right? I fear not.

Air-brushing too could well be on the rise as marketing teams try even harder to sell the beauty of their products, their beaches and hotels, their cosmetics as recessionary pressures impinge on consumer spending…

Maybe we should seek funding from the companies that might do well from recession – but would they really want to support a charity at times critical of their exploits?

The jury’s out but will be called back at the end of the month. Any advice, please?!

Jim Evans was an old-school Consultant trained by Harold Gillies, the father of plastic surgery, during the Second World War. Mr Evans, as everyone very formally spoke of him, would, you might have expected, have had and explicated very clear plans for his patients’ reconstructive surgery – after burns in my case, acquired in an accident in 1970, aged 18. “This is what I am going to do next” he might have said – and I might have fallen into line.

But his was a much more gentle – and in today’s terms, patient-led – approach, at least it was with me. He would lay out the pros and cons of all the options – especially the aesthetic limits of what he could do. He’d even consider some of the crazy ideas I came up with – like raising a huge pedicle tube on my back to replace my severely burned chin, an idea he initially thought far too risky but came to see might work. And then, in a self-deprecating way, he’d step aside with “The choice is yours”…

And I would then have to weigh up in my mind (not his) what each option would involved for me – the impact on my face (would anything really make much difference?), my life, my self-esteem and confidence, my chance of getting work or getting love – and many other things too, of course – pain, discomfort, hospitalisation, needles, loss of education etc etc. I decided to have many operations but eventually, my choice was to say No – and walk away to try to become a citizen and not a patient any more.

Tonight Channel 4’s Beauty and the Beast: the Ugly Face of Prejudice episode brings together two women one of whom cannot believe that the other would not put herself through more surgery to change her looks – probably a lot more. She cannot accept that someone could possibly feel happy with the way they look ‘if you look like that’.

It gets to the root of two dimensions of our prevailing beliefs about face values: first, that plastic and cosmetic surgery (two different things incidentally) can create the beautiful, untarnished looks that are the passport to happiness; and second, that someone without those looks cannot possibly live a meaningful life, happy in her own skin. It is as if the culture is saying “NO, the choice is ours” – which denies people their right to choose and imposes unwarranted pressure on anyone who looks unusual.

Incidentally, my position is that I am entirely happy for people to have cosmetic surgery as long as they have been fully informed of its risks and benefits – and all the alternative routes to happiness too!!