Reproduced from the Daily Telegraph Health and Wellbeing section on 27th of June 2000. Article by Christine Doyle.
From the breast to the brain, and the lung to the prostate, it's hard to think of a body part that does not have a charity dedicated to promoting its own medical interests. A surprising exception is the face. Cosmetics companies may seduce us into spending small fortunes on making the best of our features, but this counts for little if your face is disfigured by disease or an accident, damaged by a violent attack, or distorted by unequal growth of bones. The shape of the jaw or nose can be critical to emotional stability, as Sue Elphick, a 33-year-old nurse, discovered as a child. "I always felt I was an ugly duckling. My bones seemed to grow at different rates. My lower jaw and chin lengthened and curled up until I was able to touch my nose with the tip of my chin. My cheek bones flattened, and soon my face looked like a crescent moon.
"I was called names as a child and for many years was extremely sensitive about how I seemed to others. I avoided social gatherings and I would always sit so that no one could look at me sideways. My first husband was no help and made me feel more ugly and downtrodden, but inside I knew I was not really like that: there was a braver, more confident personality trying to escape."
Like many fellow sufferers, she found few organisations to turn to for information or support, and "friends and family gave me conflicting advice about surgery". From tomorrow, however, the face will have its own national charity. Called Saving Faces, it will be devoted to research into the prevention and treatment of oral and facial diseases and injuries. It will be launched - appropriately - at the National Portrait Gallery by Chris Smith, the Secretary of State for Culture, Media and Sport. The charity will mark its debut with an innovative exhibition of paintings of patients from the Royal London Hospital, in the East End.
Saving Faces is the realisation of a 10-year vision for Iain Hutchison, a maxillofacial surgeon at the Royal London. One of the charity's major aims is prevention. "Extraordinarily, it is as if the face is invisible. Where are the campaigns, like those for breast and skin cancer, to alert people to the early signs of mouth cancer? How many people have any idea that cancer of the mouth affects as many people as cervical cancer or melanoma? And that it can be caused by smoking?"
Mr Hutchison has a mission to educate, which he believes might be achieved by shock tactics. "We carried out a pilot study in an East End secondary school. I gave a 15-minute talk to the 200 or so pupils in each year. A 28-year-old patient being treated for mouth cancer came with me. I showed graded slides of the mutilation that can be caused by surgery. They gasped. Eight in 10 of them had never heard of mouth cancer.
"I told them that if everyone in the room smoked, half of them might die of a tobacco-related disease. The young man with me told them he started smoking at the age of 11. There were more gasps." Opinion, he accepts, is divided over the lasting effect of shock tactics. But one month later, 50 per cent of the smokers at the school had stopped. "We are just about to go back for a one-year follow up," says Mr Hutchison. "This is only a pilot project, but Saving Faces has set up the UK Oral Cancer Research Group of 38 young maxillofacial surgeons and our plan is to rope them into a nationwide study covering 76,000 secondary school children. That will be the real test."
Another plan is for young surgeons to talk to schoolchildren about alcohol-related injuries. "Children often don't believe their teachers - or the health education posters," says Mr Hutchison. "I believe some straight talking from young men and women whose faces have been seriously injured in a drink-related road accident or assault, and also from those who have to repair the damage, could have an impact." On the surgical front, Mr Hutchison is equally outspoken. "We do not have enough surgical 'gold standards' for oral surgery. Maxillofacial surgeons are extraordinarily dedicated but, like many surgeons, they tend to believe in their own techniques. We do not know for certain what might be best and there are few trials to guide us." Saving Faces wants to fund a trial centre where maxillofacial surgeons will record details of major cancer and other surgery. "The aim is to compare and assess the operations and raise standards across the country."
Sue Elphick's abnormal facial development falls into the middle of a spectrum, with cancer at one extreme and wrinkles at the other. Mr Hutchison believes those in the middle often get a poor deal in life and that more should be done for them. "About 15,000 children might benefit from surgery to correct deformities which can worsen with age." Today, Sue is a pretty young woman, who says she "emerged from a cocoon" after major - and gruelling - surgery. "By chance, I was working in the same operating theatre as Mr Hutchison. So I asked him what he could do for me." There followed a year's orthodontic treatment to correct teeth in readiness for surgery. During the long operation, Mr Hutchison broke Sue's upper jaw and pulled it forward. He also broke her flattened cheek bones and resculpted them with grafts from her own hip bone. Six titanium plates hold her new face together.
Sue, who will be present at tomorrow's launch, is happily remarried with two small children. "The operation gave me freedom. My friends always supported me, but now I am the real me again. I face the world with a spring in my step." To those who might think such major surgery is a response to today's increasingly perfectionist society, Mr Hutchison insists that "serious growth distortions can blight life" - a sad fact which is being confirmed by a Saving Faces research study in which people are asked to respond to photographs of abnormal and normal features. Medical psychologist Paul Farrand, who is leading the study, explains that early results suggest, as expected, that we make snap judgments on the basis of looks alone.
Rhonda Gibbs, a 33-year-old florist, always used to look depressed and miserable. People reacted negatively to her lopsided appearance, says Mr Hutchison. Her nose had grown to the left and her lower jaw to the right, among other irregularities. "As a child I was fine," she says. "The changes started in my mid-teens. For years, I thought you just had to put up with the face you had." Surgery transformed her, says Mr Hutchison. "Now, her cheerful smile and personality shine through and people smile back."
Other projects in the pipeline include a collaboration with the Football Association to investigate facial injuries during play, the establishment of one-stop neck lump clinics, and the use of alternative treatment to speed recovery after operations. One thing is certain. Tomorrow's launch will put a new complexion on the usual interpretation of "face saving".