The psychological impact of living with a disfigurement cannot be overestimated.

Health care

One GP said that I had the cold sore virus all over even when it had been diagnosed as eczema. This was upsetting for me. Nobody has suggested counselling or help to stop scratching and I have been too embarrassed to ask, and I think it won’t be available. I have been told that I just have to not scratch but I have not been offered any support.

Changing Faces has been concerned about the lack of psychosocial care for people with skin and other disfiguring conditions for many years. Through the ‘Look At Me’ campaign, two reports have highlighted what the quote above suggests: that there is a paucity of psychosocial care throughout the NHS.

The psychological impact of living with a disfigurement cannot be overestimated. As every section of this report shows, it can have a devastating impact on almost all aspects of a person’s life. We asked respondents on a scale of 1 to 10 how much impact they felt their condition had on their life, and whilst the average was 5.5 – in the middle of the range – 42% of respondents said it had a severe or very severe impact.

We also asked on a scale of 1 to 10 how confident respondents felt about living with their condition day to day. The average was 5.6, just above the middle of the scale.

Respondents’ perception of their own state of health was generally positive. On a 1 to 10 scale, the average rating was 6.6, with 31.5% with poor or very poor perceptions of health.

We asked respondents how well they felt their healthcare professionals recognised the psychosocial impact of their condition. Whilst the average was 4.8, it is of note that almost one fifth (19.8%) answered ‘not at all’ and almost two-fifths (38.9%) said their healthcare professionals had very little understanding.

Similarly, when asked about how well their healthcare professionals respond to their psychosocial needs, 22.8% said ‘not at all’ and 39.8% recorded a poor response. The average was 4.7.

These results are alarming, and suggest that there is an urgent need for further training and development within the NHS. Additionally, 77% of respondents had experienced an NHS employee making an assumption about them based on their appearance, and 67% had experienced an NHS employee making an assumption about their emotional health.

Despite long-established links between disfigurement and emotional and psychological well-being, 75% of respondents reported being denied medical or surgical treatment for their condition on the basis that it was ‘cosmetic’ or unnecessary in some way. Unsurprisingly, 22% of respondents have resorted to paying for private medical treatment.

Many respondents reported frustrations with General Practitioners (GPs) who don’t understand their condition or appeared unwilling to understand the psychological complexities. Given time pressures on GPs, and the broad range of the knowledge required for general practice, we recognise that they cannot be an expert on all conditions. But as the following quotes show, there is a need for greater understanding and empathy.

“Some doctors assume you’re dirty and have no idea about my illness.”

“My GP has usually been very supportive but each one has admitted to having no expertise and asked me to advise them on what I felt I needed from a referral.”

“My GP is useless and classes my condition as cosmetic. ‘It’s all cosmetic and we don’t do cosmetic’.”

Recommendations

6a The NHS and related organisations throughout England, Northern Ireland, Scotland and Wales must make it a priority to reduce health inequalities as a result of disfigurement and ensure patients with disfigurements are treated fairly and respectfully.

6b All health care staff must receive training and guidance on how to deal with the issue of
disfigurement and ensure that they are not making negative assumptions about patients with disfiguring conditions.

6c Clinical Commissioning Groups and Health Boards should provide adequate staff and resources to meet the psychosocial needs of patients to ensure the best patient outcome.

6d Every health care professional working directly with patients with disfiguring conditions (both clinical and non-clinical) must receive training on recognising and addressing the psychosocial impact of disfiguring conditions.

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