|Living confidently with an unusual face|
|Friday, 06 September 2013|
James Partridge OBE describes how Changing Faces is working to improve care for people with conditions that affect their appearance
Despite the brilliance of surgeons and the increasing sophistication of surgery, laser therapy and other treatments, many disfigurements to the face (and body) cannot be completely removed even after many years of hospital visits and operations. This in itself can be hard to accept because it flies in the face of popular mythology – and I know many surgeons are determined to correct that misunderstanding.
The reality is that patients (and their families) often have to learn how to live with the visual impact of their scars, asymmetry, paralysis or uneven complexion in a society which attaches great importance to having ‘good looks’.
There is now considerable literature across the world that describes this psycho-social challenge. In summary, many studies show that people of all ages with disfigurements find it difficult to deal with the medical world and to feel good about themselves – low self-esteem is widely reported. This can be compounded because they are vulnerable to everyday social encounters of all kinds going wrong, as those they meet often stare, ask intrusive questions, avoid eye contact or meeting at all or, too often, ridicule them or leave them out. What is more, the majority of studies suggest that the severity of a disfigurement is not a good indicator of its psycho-social impact. What may appear even to a clinician or member of the public to be a minor blemish may be seriously distressing to the person themselves.
There are three inter-related impacts, which are found, interestingly, to be very similar to those experienced by people with non-surgical conditions like vitiligo and eye conditions.
The first is medical; most patients with disfiguring conditions and their families want to be well-informed about their condition and its treatment and to receive realistic ideas about the potential risks and benefits of proposed treatments, including the likely long-term outcome, especially for their appearance. Many will also express mixed emotions about surgery ranging from gratitude to surprise (even frustration) at its aesthetic limitations.
The second of the three areas is intra-personal. In our look-perfect society, a disfigurement to the face or body can provoke feelings of sadness, grief, guilt, anger, depression – but these are not always easily expressed or admitted to.
Finally, there is inter-personal contact. Everyday social encounters like walking down the street, going shopping or to school can become daunting – and making friends and intimate relationships seemingly impossible.
The intra- and inter-personal can compound each other: feeling an object of unwelcome attention from others can lead people to
Of course, if we were able to transform the global culture in which people like me circulate, things would be very different. I was recently staggered to come out of a London theatre after seeing Phantom of the Opera to be pointed out rudely in the street, drawing lots of uncomfortable attention, by a woman who yelled out “Cor, look there’s the Phantom”.
There are a number of big cultural assumptions – stereotypes or misconceptions – about people with disfigurements which tend to be reinforced by the media, film and advertising.
These centre around good looks being the key to success and happiness, labelling of people with physical disfigurement as villainous or nasty, and a perception that reconstructive and cosmetic surgery can lead to happiness.
Crucially and dispiritingly, people with an unusual appearance and their parents/families can often apply these assumptions to themselves – feeling pessimistic about their prospects, disliking their ‘less-than-good looks’ and associating them with inferiority, even immorality.
Changing Faces has been supporting people to live confidently despite the culture for over 20 years and our campaign for ‘face equality’ has struck many chords around the world. We are also pleased to see a growing awareness of psycho-social concerns amongst surgeons and other clinicians. The critical next step now needs to be taken – to ensure that these concerns are actively and routinely addressed in acute and post-acute clinical settings.
Our view is that there is a role for everyone in a clinical team in improving psycho-social care – and we have developed a much-respected pack for the training of whole burn care teams, for example, that reflects this argument.
We argue that your clinical team can take action – and Changing Faces may be able to help you do this:
Good psycho-social care
Given the extent or severity of a disfiguring condition does not correlate with the degree of emotional and social distress it causes, treating it surgically (even virtually removing it) is no guarantee that the patient will adjust psychologically. This means that virtually all your patients are vulnerable and predicting who will adjust quickly is fraught with uncertainty.
What is known is that about 30% of people do adjust quite quickly but the rest find it difficult, some very difficult indeed. Several non-physical ‘protective’ factors have been found to facilitate coping and adjustment. These include positive beliefs about future prospects with a different appearance, good communication skills to manage others’ reactions and quality social support from parents, friends and professionals.
It is important, therefore, for clinicians to bolster these protective factors through appropriate psycho-social interventions. Any patient struggling to come to terms with their appearance needs to have ready access to services that can help them develop the coping strategies necessary to living confidently.
The best way to think of what services should be available is to think of it as a pyramid of care: most patients need access to quality information about their condition and its treatment and how to meet others who have the same condition (which with the internet is more straightforward than it used to be); a smaller number will want more encouragement and self-help guides can be useful for them which that can study at home.
Some will however benefit from advice (such as on skin camouflage) and emotional support from a psychologically-trained professional and, as they are likely to be anxious and at risk of isolation, this should probably include social skills training face-to-face and in groups to build self-confidence and self-esteem. This is the role that our new Changing Faces Practitioners are being trained to fulfil – more on this below.
At the top of the clinical pyramid, a few patients will need access to clinical psychology (or similar) services – and indeed, some to psychiatry. The whole pyramid of care needs to be overseen and supervised by a suitably trained psychologist.
Changing Faces has developed a framework that enables professionals from a variety of disciplines to be trained to promote positive self-esteem by working with patients to acknowledge and examine their feelings, beliefs and behaviour, and to explore alternatives where necessary.
As well as the six-strong team of Changing Faces Practitioners (CFPs) employed by Changing Faces, some shortly in Sheffield, there is currently one CFP working in the NHS, in the paediatric plastic surgery team at the Royal Hospital for Sick Children in Edinburgh and she is soon to be joined by colleagues at Great Ormond Street Hospital (dermatology) and Salisbury Hospital (maxillo-facial and plastic surgery).
The CFP’s package, known as FACES (see box), is essentially a cognitive-behavioural approach combining a mix of psycho-educational direction and psycho-therapeutic support that helps patients gain much more control over their situation.
Founder and Chief Executive of Changing Faces