BMJ  2006;332:956-959 (22 April), doi:10.1136/bmj.332.7547.956

Practice

Patient's journey

From burns unit to boardroom

Changing Faces, London WC1E 6JN jamesp{at}changingfaces.org.uk

"It'll never happen to me." Burns? I had never given them a thought. Facial disfigurement? Never heard of it, except in war films. Frightening, though.

Born in the early 1950s, privately educated, emerging in late 1970 as an 18 year old with reasonable prospects, I was a carefree youth with high ambitions heading for a prestigious university. I took my looks for granted, traded on them, even saw them as the key to my future.

 

My life changed in a split second of bad judgment. I failed to see a bend in the road, the Land Rover toppled over, there was skidding and sparks, and the petrol tank exploded. I thought I was just singed. Lily Lewis, a former nurse travelling in the car behind, knew better. Thirty five years later, I salute her; she saved me.

I had nearly 40% severe burns. My face was swollen to three times its normal size and my legs and left hand were particularly damaged. My sight, lungs, and other organs, however, had survived unharmed. The next three months were a blur of sedation, operations, and pain. My visitors didn't need to say I looked dreadful—I could see it in their eyes. Getting my face into focus in a mirror was the big problem, but it had to be done. Rightly, there were no mirrors anywhere, so three months after the accident I decided I had to choose the moment myself and make a conscious effort.

What a sight: nasty scars, oozing scabs, redness, distortion, eyes hooded, mouth gaping. Words like "tarnished," "devalued," "disfigured," and "deformed" came to mind, words I had never used, let alone applied to myself. "Not as bad as I'd expected" were my first stoic words, but hardly believable. What were my chances? "You'll be better in a few weeks—months at most," they said. Oh good. But what did "better" mean?

Uncharted territory

Like most patients, I was on a forced march, thrown into "hospital-land," and with no guide to the language, no map references, and no route map of the surgical jungle. I discovered some fellow travellers after I emerged from my isolation ward, but they seemed as lost as I was. Any rough guides? A few heroic accounts from pilots of the second world war but no detailed guidelines for managing my feelings. Looking like I did, I really couldn't imagine going anywhere outside the hospital, let alone back to my usual life.

The surgical jungle concealed some big beasts that I had to wrestle with. The biggest was that plastic surgeons—in total contrast to my belief (gleaned from the likes of the television soap opera Dynasty, in which they worked magic on someone after a helicopter crash, making them look better than new)—didn't use plastic and cannot recreate lost looks. The surgeons let me down gently, but my expectations were shattered. I'd lost my precious good looks for ever.

I know now that it was bereavement that I went through. The euphoria of being alive ("thank God, I've survived") slid away into years of rarely expressed anger, sadness, and barely concealed depression. But, thankfully, those were the days of drugs, sex, and rock'n' roll, when my eccentric appearance (weird clothes, hats, and dark glasses) didn't seem to matter.

Gradually, with friends old and new, I rebuilt a different self belief. I was reliant no longer on my appearance but on my conversation skills, my intellectual talents, my energy in sport. And from outsider, feminist, Christian, alternative, and Marxist literature I learned there was liberation in "difference." Not conforming to the norms of the day was OK. In fact, it was more than OK; it was nothing less than revelatory. Not only had I changed my face but I'd also changed my eyes. I saw things differently, valued life immensely, was disgusted by waste, neglect, and excess, and understood the injustices of life deeply.

Facial disfigurement Terminology Facial disfigurement is not a medical condition but is a collective (and legal) term used to describe the visual effect of a facial feature—such as a scar or skin graft, an asymmetry, and an unusual or altered colouring or complexion. Common causes of such disfigurement are birth conditions (such as cleft lips, birthmarks, and craniofacial syndromes), accidents, fires, violence, surgical treatments (such as for head and neck or skin cancer), skin diseases (such as acne, psoriasis, and vitiligo), facial paralysis, and conditions affecting the eyes and nose Facial significance The face is highly significant to every human being—it supplies cues about someone's age, background, mood, and temperament, and most importantly, it carries the weight of the information we use for self identification. "That's me" is the human response to looking in the mirror. In today's society, however, the pressures to have a perfectly shaped, spotless, and wrinkle-free face are intensely felt—media hype and celebrity culture strongly associate good looks with many socially desirable attributes, including success in relationships and careers Discrimination Having a facial impairment can lead to psychological and social difficulties because of the way that society reacts. A substantial number of people have been refused employment, promotion, and access to services because of the way they look The content of this box is based on ideas expressed in two books: Partridge J. Changing faces: the challenge of facial disfigurement. London: Penguin, 1990 (now available only from Changing Faces); and Rumsey N, Harcourt D. The psychology of appearance. Maidenhead: Open University Press, 2005.

I went through a surgical transformation too. My plastic surgeon, Jim Evans, was a shy man with skills passed down from the father of plastic surgery, Sir Harold Gillies. Jim's team of young surgeons and dedicated nurses, sadistic yet lovely physiotherapists and occupational therapists worked on me superbly for nearly five years, cleverly removing my face's shock factor. The pièce de rèsistance was a 30 cm pedicle tube moved from my back to my chin over 10 months. Private Eye's Humpty Dumpty cartoon said it all—it is amazing what modern surgeons can do.

Travelling alone

But sitting on the wall was not only uncomfortable (being stared at or avoided by passers by), it also denied me (and Humpty) the vital feeling of being liked that every human craves.

I wanted to be able to walk (or hobble) unnoticed down the corridor to the hospital restaurant but discovered it was 50 metres of pure agonising self consciousness—even terror. "Can you point me to anyone who can teach me how to do this?" "No, I'm afraid you'll have to learn how to cope." I had to do it on my own by trial and error, with unceasing support from my loving family and great friends.

Dealing with other people's "scaredness" was difficult. I was stared at in every social situation ("stared" may be a bit strong, but that's what it feels like—people do look and it can be so very intrusive). I was the subject of curiosity ("what happened to you?"), often at the most inappropriate times. I had to deal with their anguish ("oh, I am sorry"—thank you, but no thank you), watch them recoil, or cope with their rudeness ("sorry, sir, would you like to sit over there" (in the corner), or "cor, ugly!") I would see their understandable embarrassment, their not knowing where to look or what to say, and I would hear about people's dread of meeting me (some people preferred not to).

And I was scared too, very self conscious, clumsy, angry, retreating, embarrassed, and "different"—just like anyone is who looks different in this world that is obsessed with how people look.

I had to learn new skills for managing all sorts of social situations by, in effect, going back to kindergarten with my "disfigurement," a word I had to use. I made lots of stupid mistakes, but with practice it slowly became second nature.

The secret to success that I discovered was not an easy one to accept. Disfigurement had made me an outsider, someone most people found difficult to approach. Ideally, of course, the whole of society would be educated out of its awkwardness but, despite my small scale efforts, this would clearly take some time.

The basis for founding Changing Places Social skills training Surgery and other interventions were not able to resolve the psychosocial problems of people with disfigurement (low self esteem, social anxiety and isolation, feelings of being rejected, depression, and sometimes even suicide). Social skills training was needed to complement surgery and other therapies Psychosocial interventions Psychologists and those trained in psychology (such as specialist nurses) needed to be added as integral members (not optional extras) of the clinical and educational teams working with people with disfigurements. This meant persuading surgeons and teachers, especially through scientific research, that psychosocial interventions (including cognitive behaviour therapy, counselling, and social skills training) were effective and cost effective Public attitudes Some people's attitudes to disfigurement were prejudiced, stigmatising, and uninformed. The aim was to inform the public that having a disfigurement was not a sentence to a third rate existence. This involved challenging beliefs that linked good looks to success and goodness, and scarring with villainy and evil. It also meant campaigning for robust legislation to outlaw discrimination against people with disfigurement

Promoting effective coping through health care A key to how well people with disfigurement cope is how much optimism and control they feel they have over their current and future lives. Health professionals can help people to achieve this in several ways Through a patient-clinician partnership that involves honest and realistic discussions about treatment options and likely outcomes, with the patient making informed decisions By supporting patients, their families, and close friends in maintaining positive beliefs about the future By avoiding an exclusive focus on appearance and acknowledging that a range of factors is involved in adjustment and coping By supporting patients when they choose not to have further surgical interventions (even if from a surgical point of view an optimal result has not yet been achieved) By encouraging patients to learn proactive social skills that will enable them, with practice, to increase their confidence in social interactions By ensuring that a multidisciplinary team is available By providing psychological screening and assessment routinely (including in primary care), with additional interventions, referrals, or self help guides as necessary By ensuring that, after discharge, patients feel able to access appropriate support when necessary

The only way I could escape my isolation was to become proactive in every single social situation, to take the initiative. I gradually applied this principle to every encounter, especially in the first seconds and minutes, in many different ways. And as I did so, I started to get the positive feedback I needed.

I even started to make new friends who were willing to be with me despite my looks. Breakthrough moments came in tiny ways: negotiating the first days at university successfully; my first visit to a mirrored barber's shop (although haircuts didn't happen often in those days); first time flirting with a girl; and getting through my first interview. I became a student of the way people reacted to me and a researcher of ways to influence them.

As these tiny "wins" slowly built on one another, my confidence and self esteem grew. I amazed myself by telling my surgeon that I was going to "sign off." He tried to argue, saying "do come back if you ever need to." But I tried to explain that now that he had removed the shock factor, for which I was immensely grateful, what mattered in all my relationships was how I behaved rather than how I looked.

From small business to charity director

I still didn't really believe that I had a hope of having a family life, but it happened and I now have three nearly grown up children. I didn't believe I could get work, but I did. I even started a business—running a dairy farm in Guernsey—making up the income deficit by teaching A level economics at the local girls school.

I didn't think I'd ever get a chance to reflect on the lessons I learned with my disfigurement, but after the 1985 fire in Bradford City's football stadium and the 1987 King's Cross fire, came a commission from Penguin to write a book—Changing Faces (see box on facial disfigurement). And from that came a chance meeting with a young academic, Nichola Rumsey, who had written her doctoral thesis on facial disfigurement after many years of clinical research.

I founded the national charity Changing Faces in 1992. It supports and represents people who have disfigurements, and hundreds of people with disfigurements now contact the charity each year. Changing Faces has built up a highly specialist team and made important strides in key areas (see box about Changing Faces). New, effective psychosocial interventions are now available, and health professionals everywhere are now gaining a much clearer understanding of the psychology of disfigurement. The British public too is becoming better informed on the subject. And, in Britain, disfigurement has been incorporated into the Disability Discrimination Act 1995.

Into the board rooms

Over the past 10 years, I have been increasingly engaging with the chief executives and boards of major private companies and public organisations in Britain. I do this through the Employers' Forum on Disability and "Dining with a Difference," an initiative conceived with my wheelchair-using friend, Phil Friend, that involves raising the understanding of directors during a safe but challenging meal. Mindsets are shifting as companies see that becoming "disability confident" is not a corporate optional extra in today's economy and society, but a strategic necessity. Organisations that get it right are now competing for skilled disabled people and ensuring that disfigurement and disability are no longer barriers to entry into jobs, including top ones, and that all customers get access to their products and services.

The journey goes on

Disfigurement seems to be topical now but is still too often draped in negativity. "Scarred for life" headlines in the press bombard us into believing that scars mean a life in the shadows. Cosmetic surgery is ruthlessly marketed as the passport to happiness. Media stories speculate that new medical magic remedies of face transplantation and scarless wound healing are just round the corner.

Resources Changing Faces (www.changingfaces.org.uk)—A national UK based charity that supports and represents people who have disfigurements of the face or body from any cause. It can supply a list of groups and organisations that provide support, information, and advice about specific conditions The Centre for Appearance Research (http://science.uwe.ac.uk/car)—Based at the University of the West of England in Bristol, it conducts research into psychosocial, educational, and cultural aspects of appearance and disfigurement Dining with a Difference (www.diningwithadifference.com)—Aims to help directors and senior managers of major public companies to develop clearer and more realistic views of people with disabilities or disfigurement Employers' Forum on Disability (www.employers-forum.co.uk)—A major employers' organisation that aims to make it easier for employers to recruit and retain disabled employees

Changing Faces aims to challenge society to deal with disfigurement in a modern way, celebrating people's different faces and not marginalising those whose looks are unusual or fail to match today's unreal appearance norms. The charity is about empowerment and justice today and supports research for better treatments tomorrow.

We are reminded daily of the challenges: in South Africa 4000 people are killed every year in fires, and thousands of children and adults are injured and are likely, if they survive, to disappear into the shadows never having access to the "shock reducing" surgery I had, let alone the empowerment that has been made possible in Britain.

A wise old Indian once said to me back in 1973: "you have far to go and much to learn." He was so right, but I had no idea just how far or how much.

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The author thanks Nichola Rumsey (professor of appearance and health psychology at the Centre for Appearance Research, School of Psychology, University of the West of England, Bristol), Suzanne Millstone (head of client services at Changing Faces), and Peter Lapsley (chief executive of the Skin Care Campaign) for their support in the writing of this article. The cartoon is reproduced with kind permission of Private Eye/Nick Newman.

Competing interests: JP is chief executive of Changing Faces.

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