Written by: Kofi Dwinfour

What is a disability? Who decides, more pertinently, how do these people decide? What factors are considered, and are the deciders influenced by third party forces. All weighty questions and I pose them with a purpose. There is an election coming and everybody is gearing up to shape the agenda. Everybody wants to ‘influence the national conversation’. Looks like health, specifically the state of the NHS, will be a key battleground. Endless claim and counter claim. Promises of more money, which the other side will say is a chimera, a feat of prestidigitation. Accusations of creeping privatisation that will be vehemently denied. Amid all this noise, who is speaking up for skin disease sufferers and their carers?

Anyway, back to the original question, what is a disability? Back in 1948, the WHO defined health as

“Not merely the absence of disease but complete physical, mental and social well-being”

Certainly, by this broad but universal definition suffering a non-fatal but chronic skin disease is a disability.

Moreover, there is a large and growing body of evidence, over the last 15 years, linking skin diseases such as acne vulgaris and psoriasis with suicide ideation. One study demonstrated that psoriasis has as much negative physical, social and psychological impact as life-threatening conditions such as angina or cancer. Yet skin disease patients and their issues still languish in the basement of concern. Why is this? Many things, lack of leadership certainly. However, and this may be controversial, us in the skin disease community have to shoulder our share of the blame. We just have not done enough to be taken seriously. I once received a good piece of advice about how the real world works. I was told that nobody gives you power, you have to take it. That is what I want us to do. We have to own our power. To get us started I am presenting my 5-point plan…

Manifesto My skin disease patients’ Manifesto

  1. Mount national campaigns to raise awareness of skin conditions and how to prevent them or get help regarding them. First priority, create a National Skin Diseases Awareness Day
  2. Priority must be given to the goal of achieving and maintaining healthy skin for all
  3. Increased expenditure on Dermatological research, such as into new vaccinations and treatments
  4. Empower patients through educational strategies in managing their skin conditions
  5. Reduce deficiencies in primary care dermatology [Read the minutes of the APPGS event on Skin Event – A Crisis in Dermatological Education and Workforce]

It shocks me that currently 20% of consultant dermatologist posts are unfilled, and there is no national outcry. The impact on patients is considerable. I have heard of patients waiting two hours or longer to see a consultant. Moreover, most dermatology consultations only last eight minutes, which is not sufficient time to diagnose a problem. The situation regarding GPs is just as bad. Health Education England (HEE) agrees that:

“The initial training of GPs in dermatology is inadequate.”

Before, during and after the election I will be pushing this skin patients’ Manifesto, starting with members of the All Party Parliamentary Group on Skin.

So will you sign-up and join my revolution? If you would like to talk, then contact us. For example, you can make a video, sharing how your skin condition has affected you; and for the camera shy maybe a voice note or written story. You can post directly on the Share Your Story page on this website. Alternatively, you can email your story or ask us to contact you.

Disability Awareness Day is Sunday 15 July, what are you going to do?


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