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How healthcare professionals can improve wellbeing for those living with visible difference

One in five [1] people in the UK live with a mark, scar or condition that makes them look different – in other words, a visible difference.  

Visible difference ranges from congenital conditions such as Treacher Collins syndrome and cleft palates, to acquired conditions, including burns and scars. 

Despite its prevalence, there remains a lack of understanding and support available for the impact a visible difference or disfigurement has on someone’s mental health and general welfare. The Royal Society of Medicine invited Susan Ross, Head of Education and Learning at Changing Faces, the leading UK charity for those living with a visible difference, to share advice on how healthcare professionals can impact good mental health outcomes for people living with a visible difference. Susan was joined by two of Changing Faces’ campaigners, John and Mel, to share their patient experience stories. 

In this article (below), Susan summaries some of the key points from her talk.

Susan Ross
Susan Ross

Supporting healthcare professionals to reduce the psychological impact of living with visible difference
By Susan Ross, Head of Education and Learning at Changing Faces

Healthcare professionals aren’t always aware of the psychological impact of having a visible difference. It may well be that in fact, they are aware but feel that they don’t have the necessary skills to support patients, or a referral pathway that their patients can access. 

That is why it is so encouraging that we were invited to the Royal Society of Medicine to help healthcare professionals gain an understanding of the impact of having a visible difference and learn what they can do to support good outcomes. We’ve grouped our advice under four headings: 1. Assess the impact, 2. Provide information, 3. Normalise and validate distress, and 4. Refer for wellbeing support. 

1. Assess the impact

Think about how you currently ask people about their condition. Patients are often concerned about taking up health professionals’ time and can feel uncomfortable talking about appearance concerns, unless they’re invited to. Rather than asking only about the condition, ask how they are feeling, or if the condition is stopping them doing anything. Their response may be along the lines of “I no longer go swimming” or “I used to meet up with the other mums on Thursdays for coffee, but I don’t anymore”. 

Or if you see someone come in with their skin covered on a hot day you could say “People coping with your conditions can often feel more anxious and self-conscious. Is that the case for you too?” 

Looking out for potential signs of changed behaviour or distress means that support can be put in place early, which will greatly enhance outcomes. Their answers will help you assess their mental wellbeing and you can use whichever assessment tool your hospital, clinic or practice use for depression (PHQ9) or anxiety (GAD 7). 

2. Provide information

Research and our survey [2] show patients want and benefit from information about their condition, as well as being involved in the decision-making process. Giving honest information around prognosis, potential improvement and timescales is key to helping patients have realistic expectations and preparing for what might happen in the future in relation to their condition. 

Where there are choices about treatment, ensure the patient understands those choices and their implications, and that the patient’s choice is respected. 

Remember to give information directly to the patient and be aware that you may have to repeat the information several times – particularly if it is distressing or new information. Leaflets can help patients go over the information in their own time.  

If there are no treatments available, consider offering wellbeing or mental health support. Signposting charities such as Changing Faces or condition-specific charities can help too. 

3. Normalise and validate distress

It’s important to carefully consider the language you use when discussing your patient’s condition, using neutral, descriptive and factual words rather than emotive or judgemental ones. 

For example, rather than saying they have a “funny” or “odd-looking” lump or “nasty” scar, say “swollen”, “soft” or “hard” lump or “raised” scar. Words such as “ugly”, “abnormal” or “deformed” can stick with a patient and cause them distress. 

The word disfigurement may also cause distress, so our advice is to use the name of the condition or the phrase visible difference.

Keep it simple, be consistent, and listen to the words your patients use and try to reflect these back to them. Help them if they’re struggling to find appropriate words. 

4. Refer for wellbeing support

If you feel your patient has mental health or wellbeing concerns then refer them to support services within your organisation. We know that mental health support is under considerable strain at the moment, and your organisation may not have this form of support available. In these instances you can refer them to their GP, Changing Faces or other charities. 

Remember that the need for this support may not be immediate. The trauma experienced by the patient due to their condition, surgery or treatment may mean they aren’t ready for wellbeing support in relation to their visible difference until months later. It’s therefore important to give them this information when they are in your care so they know where to find it if they need it further on in their journey. 

For further advice for healthcare professionals working with patients with a visible difference, visit the Changing Faces website. 

John Hewson

John's story

In January 2022, I was diagnosed with a malignant tumour, known as a “squamous cell carcinoma” on my lower right eyelid. It rarely attacks this area of the body as aggressively as it did. Within a month, my healthy right eye had to be removed in order to remove the tumour and I was left with a flap of skin, taken from my belly, where my eye used to be.

I was shocked and when I looked in the mirror I didn’t see “me” anymore. I thought my world had ended.

Since my surgery, I have resorted to wearing an eye patch or covering up my eye to avoid being stared at. Being stared at makes me feel anxious and self-conscious and reminds me that I no longer look the same as most people.

It’s still early days and I’m still struggling with crowded places and generally avoid those where I can. But living on a houseboat can be quite isolating and comes with its own challenges. Fortunately, I’ve found that the wonderful boating community have rallied round me and helped me so much. Even if it’s just stopping by to see me and chatting for a couple of hours about normal stuff, not my condition.

Read John's full story
Mel

Mel's story

When I was two years old, I was involved in a car fire which left me with severe burns. I’ve really struggled this year with PTSD from my accident, which can be triggered by seeing my own visible differences in the mirror and people’s reactions to me. When people stare it almost “reminds me” that I’m different, even on days when it wasn’t foremost in my mind. I’m always “the girl from the car fire”, and some days that is more difficult than others.

As a result, university was challenging this year, as I balanced a lot of mental health struggles alongside my busy schedule. For me, people always appreciated the physical struggle, but the toll facial difference takes mentally is poorly understood. People who know me well tell me they don’t notice my scars, and I love that, I love the freedom to be truly seen by those I socialise with. But that’s not true of everyone and sometimes my scars are all that people see.

Writing my dissertation on discrimination law and facial difference has really brought together all aspects of my life into one thesis. One that I hope gives a voice to a little understood area of discrimination law, and the possible protections for that both legally and socially.

Read Mel's full story

[1] ComRes interviewed 2,090 UK adults online between 22nd – 24th March 2019. Data were weighted to be representative of UK adults by age, gender, region and socio-economic grade. Full data tables can be found at www.comresglobal.com in the ‘published polls’ section. 

[2] Independent survey -avanta ComRes interviewed 1,038 people with a mark, scar or condition that makes them look different online between 24th of September and 3rd October 2021. When we asked them What would make the biggest difference to you​ 

 

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