One of my previous post was about the postcard I wrote to my psoriasis. The reason I wrote that postcard, along with many other psoriasis sufferers, was part of a campaign called See Psoriasis: Look Deeper. A campaign to change the way psoriasis is treated, not treating just the condition, but also treating the person.
This is a collaboration between the Mental Health Foundation and The Psoriasis Association. They have come together to help get across the message that psoriasis isn’t just a skin thing. It affects each person individually, no two people suffer in the same way, not two people have psoriasis that looks the same. Your skin is a large part of you, it reacts differently on every one of us depending on your health, diet and mental state. We need to recognise that psoriasis, like beauty, isn’t just skin deep.
If you have read my blog before you will have seen the mental anguish I have experienced with this condition. Even after having it for over ten years I am still not sure if I can handle it. I say I can and I tell psoriasis it will not control my life. I still have moments where I sit, probably think too much, and wish it away, wish I didn’t itch, wish I didn’t feel ashamed to show my skin in public.
So I write a blog, I let my feelings out. Something many sufferers don’t do, they don’t talk about it. Ashamed, that word keeps coming up when you read about people’s experiences with psoriasis. Ashamed to show your skin, so ashamed you won’t even talk about it so what do you do? You bottle it up, you let it take over, you turn to other things, drink, anti-depressants, you think about suicide. This is why things need to change and this campaign is so important. It’s why the postcards were used, it gave people a channel for their feelings to be let out.
The campaign officially launched on Wednesday 17th October in parliament. I was lucky enough to be invited to attend the launch in the Member’s Dining Room in Westminster. I was excited for two reasons, first because of how important this is to me and secondly that I was going into parliament, you know beyond the bit the tourists can go. It also held significance being held there as it meant that people who can make a difference, policy makers, were already taking note. The event itself was sponsored by Sir Paul Beresford, Chair of the All Parliamentary party group on Skin.
As we entered the room, we were greeted by a sparkling white tree which had all the postcards hanging from it. It was truly stunning, this is our tree, our psoriasis tree standing proud and showing everyone there what this condition does to us. I read some of the postcard and even though I also have the condition, it is still heart breaking to read how it affects other people. I relate to much of it and maybe that’s why it gets to me so much. I thought it was tough putting my own feelings down in words, reading others was harder than I could ever imagine.
Some facts from the report: 1.8 million people in the UK have psoriasis and it affects both men and women equally. Approximately one third of those experience depression or anxiety. 30% of people with severe psoriasis take anti-depressants. One in ten contemplate suicide. These facts alone give you a good idea as to why the mental health and wellbeing of sufferers is needed.
Most of the time when you see a doctor or nurse they ask how you are, your normal response is to say “I’m fine, how are you?” and that’s as far as it goes. What we need is to ask different questions. Something like “how does your psoriasis make you feel?” or “How does your psoriasis affect your life?” “How are you coping day to day?”. In the 10 years I have had the condition, I have been asked those questions once. What may be surprising to some is that it was my GP who asked about my wellbeing, not my consultant. My first post on here “A Dark Night” may never have been written if I had been asked these questions earlier on. Maybe I would have avoided ever getting that low.
I have quoted below some key points from the report below but would ask you read the full report, it doesn’t take long.
“We call for the full impact of psoriasis to be recognised and treated by multi-disciplinary teams who will look deeper, both literally and metaphorically, to ensure that the treatment people receive addresses all their health needs.”
“To create change, we need to Prioritise political efforts to ensure that the financial levers and incentives for commissioners are aligned to multi-disciplinary working. Beginning with the National Institute for Health and Clinical Excellence (NICE) guidance on the management of psoriasis,and following through to the guidance issued by the NHS Commissioning Board to the new Clinical Commissioning Groups (CCGs), the NHS must support collaborative working that can respond appropriately to both the physical and psychological needs of people with psoriasis.”
We, as the See Psoriasis: Look Deeper Collaboration, call upon…
Policy makers to…
- Ensure that the forthcoming NICE clinical guideline on psoriasis adequately considers the multi-faceted long-term nature of psoriasis and the impact it has on an individual’s psychological wellbeing and quality of life
- Speed up the development of a Psoriasis Quality Standard that contains clear advice to the NHS on the need to consider the psychological wellbeing and quality of life impact of this long-term condition
- Ensure the Commissioning Guidance produced by the NHS Commissioning Board requires CCG to commission services for people with psoriasis that are multi-disciplinary, addressing the longterm impact on psychological wellbeing and quality of life
- Ensure that all local health economies establish clear referral pathways for psoriasis with closely allied multi-disciplinary teams who can address the multi-faceted nature of this long-term condition
People with psoriasis to…
- Understand that help is available to address the multi-faceted long-term nature of psoriasis including the impact it has on their psychological wellbeing and quality of life
- Talk to their healthcare professional about the impact of their psoriasis on their psychological wellbeing and quality of life, and to ask for support and resources when needed
Friends and family of those people with psoriasis to…
- Understand that psoriasis can have a significant effect on a person’s psychological wellbeing and quality of life, and to encourage the person living with psoriasis to talk to their
(all quotes and facts from the Look Psoriasis: Look Deeper report and I claim no ownership)
I would like to thank the speakers at the launch for giving their time and support to this campaign.
Sandy McBride, Consultant Dermatologist at Royal Free Hampstead NHS Trust
Christine Bundy, senior lecturer in Behavioural Medicine at the University of Manchester
Professor Chris Griffiths, Professor of Dermatology at the University of Manchester
Toby Hadoke, actor, writer and stand up comedian who suffers from Psoriasis. A special mention to the bell in the house of commons for heckling him. A very annoying bell to which Toby said “That is an audible representation of psoriasis, imagine that going off in your ear all day every day”
Thank you to Weber Shandwick for the work they have done in conjunction with this campaign and for their understanding and compassion when conducting the telephone interviews. That can’t have been easy listening to us all. Special thanks to Anya Forward, who was my main contact, always professional and understanding.
Thank you to my fellow psoriasis sufferers, without us all getting involved and letting people know just how much we are affected by the condition, we can’t get anywhere.
Thank you to Sir Paul Beresford for sponsoring the event and inviting us into Parliament.
Thank you to Abbott UK who funded the initiative by an educational grant.
Final thank you to Helen McAteer, Chief Executive of The Psoriasis Association and Andrew McCulloch, Chief Executive of The Mental Health Foundation for the collaboration and I can’t forget here, Carla Renton from The Psoriasis Association for letting me know about this campaign in the first place.
For more information, please visit:
Link to the full report:
p.s. Sorry this post was a bit long, there’s a lot to say.