Can GPs do more to help patients with facial disfigurement?BMJ 2015; 350 doi: https://doi.org/10.1136/bmj.h1160 (Published 10 March 2015) Cite this as: BMJ 2015;350:h1160
- Anne Gulland, journalist, London, UK
The book Wonder details the travails of a 10 year old boy with a facial disfigurement who tells the reader: “I won’t describe what I look like. Whatever you’re thinking, it’s probably worse.”1 The story was inspired by an encounter the author, R J Palacio, had in a shop with a girl whom she now believes had Treacher Collins syndrome, a rare genetic condition that causes craniofacial abnormalities. Worried about her son’s reaction to the girl Palacio fled the shop, while the words of the girl’s mother echoed behind her: “Okay guys, I think it’s time to go.”
“It was horrible, just horrible. My heart broke for this woman and for this girl, for whom this must happen a million times each day,” Palacio said in a newspaper interview.2
This scenario of extreme social embarrassment is familiar to Carly Bailey, who developed facial paralysis when she was 14, and describes how she became a virtual recluse over the following 19 years because she could not cope with stares and cruel and insensitive comments from strangers. When she sought help, she encountered doctors who “focused on fixing my face” but offered her little psychological help.
Then last year she was offered specialist support by a charity called Changing Faces and, she says, it has transformed her life.
“For the first time I have met other people with a facial disfigurement. Also, for the first time in my life I have been able to talk through the emotions I have been feeling—repulsion and the sadness and grief for a face I once had,” she says.
Now, in the first attempt to provide comprehensive support for patients with facial disfigurement within a general practice, the Street Lane Practice in north Leeds has teamed up with the charity, which is based in Sheffield, to open a clinic offering psychological, emotional, and social support.
With a £35 000 innovation grant from the city’s three clinical commissioning groups, the practice is running an outpatient dermatology service for patients from across Leeds offering group and individual sessions with two counsellors from Changing Faces. The practice already runs a skins camouflage service in partnership with the charity.
Changing Faces, which is supported by the BMJ, has counselling services in several hospitals around the country, but this is the first time it has provided counselling and support in a general practice.
James Partridge, chief executive of the charity, describes it as a breakthrough.
“We have managed to get all the CCGs in Leeds to support this—it’s a really important development as the NHS is saying that it sees that this might be a viable service. I hope that over the next 18 months [the period funded by the grant] we will be able to prove that,” he says.
Lesley Sunderland, a GP at the Street Lane Practice, thinks the service has great potential. “It’s going to help patients cope with their lives, it may reduce the amount of antidepressants they’re on. It may get them back to work and help them manage their families. It’s about the general wellbeing of the patient, not just treating their skin condition,” she says.
Sunderland is not sure how many patients will come through the doors of the Leeds clinic. Figures from Changing Faces suggest that 542 000 people in the UK have a significant facial disfigurement.3
All NHS patients in England have access to counsellors through the Improving Access to Psychological Therapies scheme, but waiting lists are long and their services are not tailored, says Ahmina Akhtar, one of the Changing Faces practitioners. Her work focuses on helping clients, and their families, understand their condition and discuss its psychological impact.
“Whether people are born with a condition or develop one they experience a whole range of emotions. People experience loss, anger, and also feelings of unfairness. We talk through all that with them. We also highlight the importance of meeting other people who also experience a condition that makes them feel different,” she says.
Having the tools to face the outside world is a key component of the sessions, says Akhtar.
“We put a lot of emphasis on developing a good set of social skills and helping people to be more confident and assertive. We help people come up with prepared responses to questions and deal with things they encounter,” she says.
Bailey agrees that the tailored nature of the Changing Faces sessions is what makes them invaluable to patients with disfigurements, with practitioners addressing both the physical and psychological aspect of conditions. Bailey’s condition means that she has difficulties eating and drinking and led to a fear of socialising, but her counsellor has helped her overcome this. She even credits the service with helping her find love after she plucked up the courage to tell a friend what she felt about him.
“Before the sessions I would never have believed that anyone could be interested in me,” she says.
Cite this as: BMJ 2015;350:h1160
Competing interests: I have read and understood BMJ policy on declaration of interests and have no relevant interests to declare.
Provenance and peer review: Commissioned; not externally peer reviewed.