Tag Archives: Mental Health Foundation

PSORIASIS BLOG – Manchester Psoriasis Shout Out 1

MANCHESTER PSORIASIS SHOUT OUT

SEE PSORIASIS, LOOK DEEPER CAMPAIGN LAUNCH

There’s been quite a build up to the Manchester Psoriasis Shout Out, which is a refreshingly upbeat campaign to get people talking about this most hidden of conditions. For the first time in my life, despite my long association with the city, I set foot inside Manchester town hall on Monday 28th April. I made sure that my larynx was in good shape for this was to be the day that the shout out began.

Psoriasis Blog 5
We have a new tree for the patient postcards. The old one has gone to the great forest in the sky.

Earlier there had been a couple of flashmob dances but I absented myself from those of the grounds of an old war wound and the fact that there’s a line (one I won’t be crossing, even with a jig). My contribution to the day (purely verbal, thankfully) came during the Manchester launch of the See Psoriasis, Look Deeper campaign. I have blogged about this before, but since then we have acquired a new tree (the old one fell to bits) upon which to hang the postcards, and this time the Mayor Of Manchester was on hand to add a bit of officially sanctioned bling to proceedings.

Here’s a paraphrased summary of the things that were said and by whom:

Professor Chris GriffithsFoundation Professor of Dermatology, Faculty of Medical and Human Sciences, Manchester University – This eminent man provided a lot of stats. One in fifty people suffer from psoriasis. You could gather everyone in Manchester with psoriasis and they would fill Old Trafford. On a full tram four people contained within it will have psoriasis (and will therefore be twice as irritable as you are about possibly the least competent transport system since the infamous wax helicopter and jelly bicycle). It affects people’s confidence, employment options, and relationships.

Professor Chris Griffiths: a big hitter and senior psoriasis expert. He still danced in the video though.

Helen McAteerChief Executive, Psoriasis Association – Thanked everyone from the University Of Manchester who had helped with the Shout Out and contributed to research in psoriasis. Research has really developed in recent years. There remains a lack of dedicated services to manage the psychological impact of psoriasis.We need to raise the profile of psoriasis and the impact that it has. We need to listen to patients as they know the impact more than anyone. We are keen to collect people’s experiences. Healthcare has changed since the start of the campaign. We need help building services like those at The Royal Free.

Paul BristowCommunications Director, Mental Health Foundation – The Mental Health Foundation are a national charity committed to combat mental health issues. They research developing practical solutions to improve mental health services and campaign to reduce stigma and discrimination. We often hear about parity of esteem: it is important that we understand the relationship between mental health and physical health. Psoriasis is a physical health condition but has a major impact on quality of life and thus an inevitable effect on mental health. Plans for the future: continuing to raise awareness, academic research and direct patient support. We wanted to share the evidence from the postcards with doctors, patients and policy makers. Very excited about direct support for patients – helping patients understand their emotions and learn to cope with them better. Booklets documenting this will be released soon.

Dr Sandy McBrideConsultant Dermatologist, Royal Free Hospital – Shared a story about one of her patients who we will call Alan*. Ten years ago Alan checked himself in the mirror once an hour, checked his clothes for detritus, and went to hospital once a week demanding treatment. In terms of socialising he only ever went out to nightclubs because they were dark. His partner was on the verge of leaving him because he was hard to live with (not because of his psoriasis). Last week Alan was happy, he was working, was still with his partner and had an active social life. He still has some psoriasis but he is happy – he underwent 12 sessions with Doctor Mizara and that totally turned his life around. 93% of dermatology units don’t have that level of psychological support under the current system.

Dr Chris BundySenior Lecturer, Behavioural Medicine, University Of Manchester – Is very proud of the campaign. Her research unit are developing a very strong bond with people suffering from psoriasis. In our Western society we overemphasises the importance of physical features. You open any magazine and you see blemish free skin. That is the back drop with which psoriasis patients live their lives. Patients feel judged and people recoil from them thinking that the condition is contagious. These things happen on a daily basis and this affect how patients feel as an individual. Skin conditions rarely escape people’s notice and people make judgements about suffers as a result. People with psoriasis often don’t talk about it and spend time, money and energy hiding their psoriasis. Psoriasis patients talk about shame in a way that those with, say, diabetes do not. There are high levels of anxiety and distress amongst patients. This level of distress is comparable with that found in people with other long term conditions like heart disease and cancer – but people with those get first rate psychological treatment. People with psoriasis have repeatedly not been given access to the treatment they deserve. Those who have had access to these services recover better and quicker and become more productive individuals – back to work quicker and thus contributing to society with labour and tax. Therefore the treatment is cost effective.

MeProfessional Gobshite, No Medical Qualifications Whatsoever – Blah-de-blah, wordplay here, cheap laugh there, self derogatory aside, slight stutter, yaketty-yak. The End.

Links:
See Psoriasis Look Deeper
The Manchester Psoriasis Shout Out

* I am not Alan.

In relation to some queries about my post about psoriasis and mental health, a couple of you asked how the “1 in 10 psoriasis patients consider suicide” stat compared to that for non-psoriasis sufferers. Well, for those lucky folk it is 1 in 26 or 27 – so quite a marked difference I am sure you would agree.

 

(l to r) Dr Sandy McBride, A Man Who Was Once In An Episode Of Holby City, Dr Christine Bundy, The Mayor Of Manchester, Professor Chris Griffiths, Helen McAteer, Paul Bristow.
(l to r) Dr Sandy McBride, A Man Who Was Once In An Episode Of Holby City, Dr Christine Bundy, The Mayor Of Manchester, Professor Chris Griffiths, Helen McAteer, Paul Bristow.

PSORIASIS BLOG – Radio Scar

RADIO SCAR

The day after my trip to Parliament  – 18th October – I went to USP Studios to spend a few hours chatting to a number of radio stations about psoriasis and the See Psoriasis, Look Deeper campaign. It wasn’t just me, as they need some people who actually knew what they were talking about to contribute to the discussion, so Helen McAteer from the Psoriasis Association and Simon Lawton-Smith from the Mental Health Foundation were there to lend a factually correct assessment of the condition and its ties to the sufferer’s psychology, whilst I moaned about the disease and repeated the same anecdotes like a boring actor plugging his tedious autobiography.

 

Helen McAteer of the Psoriasis Association, Simon Lawton-Smith from the Mental Health Foundation and some bloke whose principal skill seems to be the ability to talk about himself a lot.

I was very impressed with how intelligently the subject was handled by our interviewers. Some were live (the interviews that is, as far as I am aware, all of the interviewers were live: the undead are one of the many groups under-represented in today’s hegemonised media) and some were pre-records to go out later: some used all of us, some wisely dispensed with my services and relied solely on Helen, and a couple of foolhardy souls (BBC Radio Manchester and the syndicated Ed Stagg Show which goes out over a number of BBC Midlands services) just used me.

One notable thing that came up was that when we were doing our first interview, the interviewer was asked not to say that people “suffer from” psoriasis, which is what he had written down on his scripted intro. As it happens, during the taped discussion, he did indeed introduce me as someone who “suffers from” psoriasis, and had to do a retake at the end. Simon took the opportunity to ask me what my take on this semantic issue was, and I said quite bluntly that I “couldn’t give a f*** how people describe it” which immediately made me realise how people in my line of work are quicker to swear than people with proper jobs. But it’s true: the interviewer wasn’t being derogatory or pejorative; he was describing a patient with an illness. I didn’t take offence at the implication that I suffer. Why? Because there are issues of import around this disease that are far more pressing than pernickety verbal scrutiny. I know what he meant, and I answered accordingly. If someone says something deliberately hurtful about my physical appearance I will take offence, but not if someone who uses a description without using the vocabulary-de-jour. Who cares? And I know that the people who have decided we must not say “suffer from” have the best of intentions too, but let’s not get diverted by the, frankly, unimportant issue of how exactly it should be described.

I will be linking to a few of the interviews here, but it will take some time as I have to host them on You Tube and doing so involves putting them together on my wife’s Mac which is as slow as an East Coast train from London to Newcastle when there’s a slight breeze and it has rained in the past three hundred and fifty years. The links below will be green when the pieces are ready:

BBC Radio Manchester (me and Heather Stott)

The Wireless on Age UK (me, Helen McAteer and Simon Lawton-Smith)

BBC East Midlands Syndicated (me and Ed Stagg – a long interview this, 21 minutes)