Ivon van Heughten on improving support for people with skin conditions

Viewpoint Interview: Improving support for people with skin conditions

Ivon interview

Changing Faces Communications Officer, Rehana Browne, interviews Policy Adviser in Health, Ivon van Heughten:

Hi Ivon, thanks to agreeing to have a chat to Viewpoint about your work! Can you tell us about your role at Changing Faces?

Hello! Certainly-I am the Policy Adviser in Health at Changing Faces in the Advocacy Team. I have been in this role for seven years. In the Advocacy team we basically try to improve policy and practice for people with disfigurements. My role is focused on health, so trying to improve the care that people receive so that they have a better quality of life and have the best opportunities in education, work and life in general.

Please tell us a bit more about skin conditions.

In a twelve month period, over half of the UK population experience a skin condition. There are many, many skin conditions and some are very common, and others are rare. The ones we know best are probably eczema, vitiligo, psoriasis, acne and skin infections. Some are very serious, like cancer whilst others, although less serious in the sense that they are not life-threatening, can still have a significant impact on a person’s life.

Some skin conditions are congenital and people can learn to live with them, others are developed later, so there’s a lot of variety and there can also be a big variance in severity. For example, you could have a little bit of eczema which doesn’t really impact on your life or you could have very severe eczema that could affect every aspect of your life in terms of treatment, impact on your sleep and the effect it can have on your appearance, an aspect Changing Faces can help to deal with.

What are some of the challenges that people with skin conditions face?

Skin conditions are sometimes believed to be contagious and that’s why some people stay away from you. They can also be considered unhygienic as there’s an assumption that you get a skin condition when you don’t look after yourself properly. Sometimes there’s a smell too because of the creams or perhaps a person’s skin might be greasy. People complain about not having clean clothes because the cream gets everywhere. That’s obviously the physical side.

Also, sometimes the skin just looks very different and people don’t feel comfortable around a person because they want to ask about it but they don’t know how to. They feel they can’t communicate with a person normally and then that has an impact on behaviour in general.

A person with eczema can have the same problem as a person with another kind of disfigurement-other people just don’t know how to behave. They either feel like they can ask any question they like or are more reserved and don’t interact at all. It makes social interaction harder.

Tell us a little bit about the support currently available for people with skin conditions.

There’s a lot of evidence that suggests there’s not enough psychological support for people with skin conditions. Of course, patients with psychological problems can access the health service like anyone else but there are very limited psychosocial services specifically for people with skin conditions. I know, for example, of a particular ward that treats people with eczema and they have psychologists on their multidisciplinary team so there are some settings where psychological care is offered on a routine basis and people are assessed on a routine basis but it is very rare.

What is psychosocial support?

Perhaps the easiest way to say that is “non-physical care”. When you have a condition, you have the physical side that needs to be treated but the emotional side- so how do you feel about it? How does it affect your identity? What does it mean in terms of coping strategies? How resilient are you? How important is your appearance to you? That’s the non-physical side.

However, it’s wrong to make a distinction between the two because the mind and the body need to be looked at together. We support integrated, holistic care and look at a person as a whole.

Why is psychosocial support for people with skin conditions so important?

Lots of skin conditions are lifelong so it’s not like you put a bit of cream on it and it gets better and then you get on with your life. You need to learn to live with it. For the majority of people this can be done so they don’t need psychosocial intervention because they adjust. However, there is a minority of people who need some help and if they don’t get that help, it can lead to more serious mental health problems.

So, basically, what we’re campaigning for is better preventative care, psychosocial intervention for people to cope with a visible difference.

What are the biggest challenges that health professionals face?

There are definitely a few key challenges for health professionals.

I think that most health professionals working in dermatology appreciate that a disfigurement can be an emotional and social challenge for their patients but they don’t feel that they have the time to assess them. And if they did do a psychological assessment, they feel they wouldn’t be able to refer the patient because there’s nowhere to refer them to. Sometimes also they feel they’re not skilled or experienced enough to ask the right questions and it’s easier to focus on the physical side. Some may not ask the patient how they’re doing because their consultation is only ten minutes and they know that if they ask that question, they’ll still be sitting there half an hour later and they don’t have the time.

It’s not like they don’t appreciate the difficulty or are not willing, they might just not have the confidence, the resources or the skills to deal with it. Also, sometimes they think that someone else, like a nurse or a GP, will deal with it. Sometimes it’s not clear where the responsibility lies. Also, we’ve heard from health professionals who are not very confident in using the psychological assessment tools…they think they’re too long, they’re not very practical, it takes a while to find them and they’d rather not bother as it’s too complex.

There’s probably also a small minority that just do not acknowledge that the psychological side is as important as the physical side of the treatment.

What is the Look At Me campaign?

It’s a campaign to improve care for people with disfigurements living with a skin condition, wherever they are on the body. The main aim is to improve psychosocial standards in dermatology. As I said, there are specific psychological assessment tools for people with particular conditions, such as psoriasis.

We also want to raise awareness amongst health professionals of the difficulties of living with disfigurements and the importance of assessing patients psychologically and being able to offer them the care that they need. Because even if you have the standards in place and the policies are right, if the health professionals are not aware of them, they still don’t implement it. That’s for doctors, commissioners, nurses, GPs…they all need to be aware of the psychosocial challenges of a patient with skin conditions.

What will you be focusing on this year?

This year we will focus on raising awareness amongst skin patients themselves about the importance of psychosocial health and what they should be able to expect from their health professionals in terms of support.

If you have the right policies, standards and systems in place, you still need the patients to be aware and you need to reduce stigma around mental health. We believe that if patients know that it’s normal that they might need some help in adjusting to their visible difference, then they are more likely to ask for a psychological assessment and care if they need it. That’s what we’re focusing on at the moment-we want to make people aware of the psychological assessments that are available for particular conditions. We want health professionals to take the psychosocial side of their condition seriously. We want to make patients more aware of the psychosocial aspect of their condition and know what to do if they need help. Some people need psychosocial intervention but are not aware that this is available.

What would you say to a patient that thinks they might need psychosocial support?

It depends on whether they’re receiving treatment from a GP or a dermatologist but they need to go to their health professionals and tell them that they are struggling to adjust to their disfigurement. They could ask their health professional to do a psychological assessment and give them all the information they need. If you need additional support, you could expect a referral from your health professional to see a psychologist. Sometimes there’s a psychologist within the team or a patient can be referred to another psychology service.

Ivon van Heughten is Policy Adviser in Health at Changing Faces. Viewpoint represents the views of its authors only and not necessarily the policies or views of Changing Faces, its staff or trustees.

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