Linzie, far left, underwent extensive surgery to improve her condition. James Partridge, left, set up the charity Changing Faces in 1990


charity is trying to influence, with some success, NICE guidelines, clinical reference groups and medical curricula. “For example, we’re trying to get to plastic surgeons when they’re being trained, so they can’t become a consultant unless they’ve done a module on psychosocial issues. And the plastic surgeons are very open to this – they’re definitely in the lead.” In addition to their work in healthcare,


FACES. It is a psychosocial toolbox for people with disfigurement, which helps them to find out about their condition and its treatment, to develop a positive outlook for the future, to deal with the complex associated feelings and to learn strategies for coping with negative reactions when out and about in the wider world. “So if you’re walking down the street and


somebody’s staring at you, that’s par for the course I’m afraid. But there are ways of dealing with it. You might, on some days, want to step back or wave, or in certain circumstances you might want to say something. Having strategies for dealing with other people’s reactions is absolutely fundamental and shouldn’t be leſt to the person to dream up on their own.” But you need more than a package, says


James, you also need someone to deliver it. Tis is where the Changing Faces Practitioners (CFPs) come into their own. Trained by the charity, these specialists in disfigurement almost always come from the caring professions – they might be nurses, counsellors, assistant psychologists or social workers. People with disfigurements can gain access to CFPs directly through Changing Faces, but the charity is increasingly succeeding in its bid to have them embedded in the health system. “So, for example, we have three CFPs working with kids and families embedded


AUTUMN 2016


in children’s hospitals in Scotland, one in Sheffield Children’s Hospital, one in Great Ormond St and one in Salisbury in the head and neck cancer team.” It’s all part of the goal to have both the


physical and psychosocial needs of people with disfigurement addressed as part of the patient care pathway, particularly in specialities such as plastic surgery, burns, dermatology, maxillofacial surgery and neurology.


Educating clinicians Te growing number of CFPs are one route to achieving that goal, but there are others too – among them a call to clinicians to think about the psychosocial element when first assessing patients. As James explains: “Consider the GP who sees somebody coming in with a Bell’s palsy – it might take three months to go away but it might not. Is it okay just to say: ‘Here are some steroids, it’ll be fine, come back and see me in three months if it doesn’t go away’? We think not – we think that the initial diagnosis needs to take account of psychosocial concerns.” Changing Faces is also active in research,


through its 18-year partnership with University of the West of England in the Centre for Appearance Research, which is developing a considerable evidence base for the psychosocial consequences of disfigurement. At a policy level, too, the


Changing Faces advocates for people with disfigurements in schools, by raising awareness among and offering guidance to teachers, teaching assistants and anyone working in education. Tey are also pushing for real equality in the workplace and more positive and inclusive portrayals of disfigurement in the media. Teir ‘face equality’ campaign aims to transform opinions in a similar way to the campaigns for racial and sexual equality. Back in Kirkcaldy, Linzie is living proof


of the charity’s beneficial effects. Tough it came along too late to help in her own medical care, her association with it has nevertheless helped to boost her self-confidence. Attending their workshops, doing


role-plays and learning strategies to deal with social situations have all played their part. Since becoming a media volunteer in 2010, she’s gone from strength to strength, sometimes talking to groups of up to 200 people. She has even appeared live on a TV chatshow. “I had about four days’ notice. We should


have been on the day before and it was going to be recorded. But then I was told, you’re going on live. It was absolutely petrifying! “But,” she says, laughing at the memory


– and this is the important part – “it was a really great experience as well.”


n Adam Campbell is a freelance writer in Edinburgh and a regular contributor to MDDUS publications


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