Support care lacking for disfigurement victims, study finds

Support for mental health is just as vital as surgical treatment in helping people cope with the distress and challenges of daily life.

The three-year study, the largest of its kind, involved 1,265 people with a variety of disfigurements including those resulting from skin conditions, head and neck cancer or amputation.

Pam Warren, who survived the 1999 Ladbroke Grove train crash, was on the advisory panel to the research.

"There is so much we don't know about why some people are able to get on with life so well after disfigurement, and why some can't," she said.

"Or even why those who seem to cope well at first might later need support."

Ms Warren suffered severe burns to her face, hands and legs in the crash and wore a Perspex face mask for two years to reduce scarring.

Beneath her significant skin-deep injuries, she said the psychological trauma of looking different was often more debilitating.

Despite excellent medical care since the accident, she recognises the need for improvement in understanding both an individual's and society's reactions to a different appearance.

She said: "It seems that the medical profession themselves have not been entirely sure about what support should be made available or when."

Other studies have shown that people with mild disfigurement suffer the same distress as more severely disfigured people.

This latest study, funded by the charity the Healing Foundation, also suggested that the visibility of a condition may be less important than previously thought, with people also anxious about revealing conditions that are normally covered by clothing.

The study recommended specialist psychological help should be more widely available and longer term as distress levels fluctuate over time, regardless of whether the person is being treated in hospital.

The research programme was led by Prof Nichola Rumsey and researchers from the Centre for Appearance Research, University of the West of England (UWE), Bristol, and carried out by a team of researchers from the universities of Bradford, Sheffield, Warwick and UWE Bristol, University College London and the Royal Free Hospital, London.