Tag Archives: Mental Health And Psoriasis

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.

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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 – Updates, Links, Articles and Events

Updates, Links, Articles and Events

 

I have been a bit quiet online of late: apologies, but the outside world needs laughter and no one else in the universe could possibly help (apart from all the other comedians out there, some films, telly programmes and the odd feather).

 

OK then, I’ve been sloppy because frankly time has been flying by. It used to be – when I was a lad (Spangles, Kajagoogoo, affordable housing etc etc) – that Christmas seemed an age away and days at school were yawning chasms until the weekend and fun. Now all of a sudden my infant firstborn is 14 in a month, has hairy armpits and probably swears. What happened there? (That was your life mate, you should have been paying attention).

 

When Worlds Collide... Me With peter Mandleson At The Dermatrust Launch.
When Worlds Collide… Me With Peter Mandleson At The Dermatrust Launch.

So apologies for the brevity but here are some links that are quite useful, I hope. First up – on February 25th I attended this year’s launch of Dermatrust, a vitally important charity which is looking to raise money to help with the treatment of people with skin conditions. At the moment there is a target of £3.4 million to be gathered which will help to fund important research and implement initiatives which could lead to drastic improvements in the lives of dermatology patients. I zipped to London and arrived with minutes to spare in order to be (and I never thought I’d feature this on my CV) Peter Mandleson’s Warm-Up Man!! I hadn’t quite realised that there were many illustrious potential donors there, so sort of bumbled my way through an ill-prepared bit of blather before the man himself gave a much more measured and intelligent talk designed to get them to part with their cash. Did he do a joke about hoovering up dead skin though? I don’t bally well think so!! Eat that House Of Lords! Though not unaware of the faults of our political system I nonetheless think it is quite exciting to rub shoulders with someone present at key decision making and world defining moments in modern history. And to tell more jokes than they did. And he seemed very nice – and having someone heavyweight lending their support to such fund-raising ventures is not to be underestimated. I suspect there wouldn’t have been quite such a turnout had the only non-medical speaker been a man (me) who was once in an episode of Holby City (albeit a man who was once in an episode of Holby City who tells more jokes than everyone else). There is lots to read on the Dermatrust website, and details of the efforts of some non sufferers who have been kind enough to run the marathon in order to raise money (running a marathon is one thing, but can they tell jokes about itchy skin? I think not!).

 

In addition to that, I have contributed to an article which highlights the benefits of treating the mental health ramifications of this pesky condition. It was published in a paper who’s name I do not care to mention (but imagine a curtain twitcher with more certainty than facts and a dubiousness about anything that has occurred since 1955 mixed with a mean spiritedness combined with an unjustified level of moral outrage and you can probably guess the organ to which I refer). Still its health pages are actually pretty detailed but nonetheless I am happier to link to the article here as it doesn’t involve a hit on that particular website. Some may say it’s hypocritical of me to feature in a paper I despise – I disagree. I didn’t profit from the piece in any way, I am simply trying to spread awareness, even if that awareness stretches into a place I wouldn’t want to go myself. There is so much ignorance about (not least in that newspaper) that I am happy to combat it anywhere. Plus Grace, the freelancer who wrote the piece, was very nice and worked hard to do a good job. I was amused that when requested for the photoshoot I was told that the paper had certain rules for their subjects: apparently readers of that paper aren’t to be subjected to people wearing black (it’s a news paper that doesn’t like black – who’d have thunk it?). I also couldn’t be entirely black and white (unlike their reporting). And finally, apparently no-one in that newspaper’s universe wears jeans, so jeans were forbidden on the photoshoot. I wore jeans*. The article (and offending photos – which didn’t make the printed paper itself) is here in case you missed the link earlier in the paragraph because you were still trying to work out which paper I was being oblique about (in which case, you probably read it).

 

Finally, next week there are a load of events in the North between 28th April and 2nd May as past of the Manchester Psoriasis Shout Out. I am taking part in some, you can take part in others. Info, links, videos and a timetable of events can be found here.

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* I know, you’re thinking “What a maverick – he don’t play by no rules. He sticks it to da man”. Indeed I do. Especially when I accidentally lock myself out of my flat and have no choice but to go to the shot in what I’d be wearing all day.

 

Psoriasis Blog – Treatment Update 12

Treatment Update 12

General Notes Dec 2013 – Feb 2014

You never write, you never call.

You’re correct, I haven’t been, even though things have being happening for the undoubted Dermatological Disaster About Town that I am. I’ll update about a couple of events I have been to shortly, but if you’re in Manchester towards the end of April there’s going to be quite a lot going on. At the moment it just says “Psoriasis Thing” in my diary – hopefully more enlightening info will make its way out soon.

Anyway – treatment continues. I’m still coming away with a full bag from the chemists (so may I heavily recommend the yearly £104 prescription pre-pay thingy? It’s saved me a fortune). I still have Pro-Topic for that stubborn bit on my face which lurks under the surface and occasionally sprouts up requiring a quick splurge which sends it packing really quickly. Having had awful, livid, stubborn, painful and embarrassing scales on either side of my nose for most of my 20s when I should have been all young and handsome, I really should remind myself now and again of how miraculous a change this simple application has been (and it was only prescribed once I was seen by Dr McBride at the Royal Free – provking a faith in her which I retain to this day).

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Bandages and hat to stop Sebco messing up the sheets. Who wouldn’t want to go to bed with that? He smells of coal tar too, you say? Sign up the whole of womankind for that heady combination…

My knees are a little red in places but my arms are the worst. They’re nothing like they were though and a consistent regimen of applying Doublebase moisturiser to my face and arms morning and night keeps me flake free even if I am a little pink when you look closely (but if you are, I’ll be certain to ask you why you’re doing it!). I have a tube of SebCo (I’ve done the “it’s the most Olympian of all the psoriasis ointments” joke already, surely?) which requires a bit of discipline – application to my arms and scalp overnight for a week. I had a go at this last month and it really did help – especially with my persistently dusty scalp. But the tube burst and so when I squeezed it came out of both ends – it’s bad enough having tar smelling goo on my body (I have to wear special bandages and headgear to protect the sheets) but I don’t want it all over the carpet. So I have a new tube which I will squeeze more carefully, but that means I need a week at home really. I don’t want it exploding in my bag.

My bloods in december were the best they have ever been – so good in fact, that Dr McBride had to look them up as they hadn’t (as is normally the case) been sent to her due to all the abhorrences and anomalies they usually contain. Liver function (the one affected by booze) was the healthiest since records (i.e. my Royal Free medical notes) began. You’ll be surprised to learn that I celebrated that good news by having a very convivial Christmas and have continued with indulgence and bad habits ever since. So my next ones will probably be awful (I was too close to my appointment with the last lot so won’t get the results till next time). We’ve been here before haven’t we?

If physically I have been found wanting, mentally things are looking a lot better. Dr Mizara has been great a providing perspective and coping mechanisms so we have started to review the progress I have made under her and to stagger our meetings a bit so I am seeing her with less frequency. I will blog separately about psoriasis and mental health as it deserves a bit of proper explanation.

In the meantime, I am still injecting myself with adalimumab, which I make far too big a deal of apparently. I think I am being all big and brave (I’m stabbing myself and I have a big, scary looking industrial bin thing to put my used needle-pens into) but my better half just guffaws. Still I feel big and brave and imagine its the sort of thing Rambo would wince about if he had to do it. I’ve got the double whammy of Nizoral and Coal Tar shampoo which, like everything else, is a good combo if I am disciplined but an itinerant lifestyle and slapdash nature mean that I occasionally get caught out and regret not wearing beige. So I am not, therefore, convinced that the Dovonex Scalp Application is doing me much cop but I am slapping that on, and sometimes the Exorex Coal Tar lotion as well because it’s better to be belt and braces innit (though in my case it’s Belt, Braces, Safety Pins, Piece Of String Tied Round The Waist and Unpleasant Smelling Industrial Trouser Keeper-Uppers That Have To Be Applied Twice Daily And Still Might Not Keep Your Trousers Up Entirely).

I have taken a course of Erithromycin as I was sunning quite throaty and would have been a bit susceptible to streptococcal throat infection from a long flight and a weekend in an LA hotel, and am now back on the preventative Cefalexyn. I am a bit worried about the fact that I have to keep knocking back antibiotics and must as Dr McBride about it next time. It doesn’t seem natural, but of course a strep throat infection is a trigger for a massive outbreak so I want to be avoiding one of those at all costs.

In summary then – General Synopsis: no pain, occasional dry patches, lots of medicine. Forecast: I need to lose a bit of weight, do some exercise, and be more disciplined with my medication.

Cue David Byrne – “Same as it ever was, same as it ever was”.

PSORIASIS BLOG – Treatment Update 11

Treatment Update 11

General Notes March – July 2013

(Gravelly Voice):  “Previously on Toby Hadoke’s Psoriasis Blog”: Skin. Ow. Red patches. Flakes. Poor mental health. Bad puns. Many attempts to make severe dermatological conditions vaguely amusing. One or two attempts to make serious dermatological conditions vaguely amusing that have actually worked.  I have been seeing Dr McBride (dermatology consultant) every four weeks and Dr Mizara (dermo-psychologist) ever fortnight or so: both are based at The Royal Free Hospital Hamsptead. I have been injecting adalimumab, a biologic treatment, since just before Christmas.

“And now, the continuation”.

cauliflower dog
I worry these treatment blogs get too technical and self-indulgent, so I’m trying to lighten the mood with a picture of a cauliflower dog.

Bloods, cholesterol and liver were generally better last month but as with Norman Tebbit’s current application to join the human race here in the 21st Century, there’s still plenty of work to be done before anything can be signed off. Plus, I’ve not been as good or disciplined this month. The patterns of exercise, healthy eating and intelligent application of alcohol are pretty much what you’d expect (i.e everything I like doing is bad for me and everything I hate doing is good for me). My scalp is still the most stubborn area, and Dr McBride says that alcohol can really affect the scalp as it has various yeast-based side effects and that helps to maintain a healthy harvest of scurf across one’s cranial landscape. Essentially Nizoral Shampoo clears the yeast from the face and scalp and then the coal tar shampoo one uses more regularly keeps the psoriasis at bay: but the more yeasty you are, the harder that makes the coal tar’s job. Still, if anyone wants some bread that tastes of the road then gather up the powdery residue all over my head and shoulders; add water; prove;  knead and bake ; et voila!

(I can’t believe I just typed that but it’s staying in).

“We haven’t quite cracked you yet have we?” said Dr McBride with as much ruefulness as someone whose glass is permanently half full could possibly muster. She’s very cheerful for some who has to look at bodies whose outer membranes look like they’ve been through a spaper shredder all day: there’s no doom and gloom at all in her assessment but rather an acknowledgement that there is still work to do. All things considered I am doing OK but not brilliantly: there are patches of bad skin on my arms and hands and a little on my sides. All things considered, she says, I am doing well, even if that “doing well” is relative (and in this case, it’s relative is a remorseless bastard).

In my other sessions Dr Mizara notes that my skin reacts very acutely to emotional stresses. I wasn’t aware that mine was especially sensitive but she suggests that it is. Part of me finds this really annoying (Pathetic skin, pull yourself together you big wuss!) whilst another sort of secretly quite chuffed (Oh, I am special am I? Like a poet or something?).

I filled in my last questionnaire for Nurse Annie about the effect that adalimumab has on my behaviour in certain carnal areas. Some things must remain a secret from even you dear reader, but all in all I am as sturdy/impotent, rampant/frigid and effective/disappointing as usual (delete as appropriate, depending on how you’ve found me to be). Quite what some anonymous boffin is going to do with my regular sex reports is anyone’s guess but I hope my candour is of use to medical science. Or at least provides them with a good laugh.

I put on weight in April/May. Dr McBride said I had to see how I’d respond if I did exercise and didn’t drink for a month – but no pressure, she said. It’s not a test and if I can’t manage it I mustn’t beat myself up. I reassured her that she’d not be disappointed with me and that I’d do my best.

Turns out, my best was shit.

Current Treatments: I am still splashing Dovonex (calciptrotriol) scalp application on my bonce, Silkis (a vitamin D cream, basically) to my arms and affected skin patches, and washing my hair with a mixture of Nizoral and coal tar shampoo (see above). There’s pro-topic for my face too but apart from some dryness underneath if I let my beard grow too long I’m remarkably unblemished on the old fizzog. I also take a massive Vitamin D booster every fortnight.

I’m overweight even though I have been eating as well as possible since June (bearing in mind I live out of a bag and am often reliant on fast food) so I need to do something about that fairly sharpish. I’ve not experienced  the great breakthrough that I had hoped the biologics would be – it seems that there are no easy answers, and I certainly can’t expect to be given any until I’m in slightly better shape than I currently am. Psoriasis is a condition that requires some assistance from its host to give it its marching orders; I can’t really complain that I’m not healthy if I drink as much as I want, have a weakness for chilli peanuts and think that taking the stairs occasionally is a workout.

 

The Skin On My Arms 6th April 2013
The Skin On My Arms 6th April 2013

As I write this Dr McBride has asked to see me in a fortnight. I’ve gone from once a month to every two weeks now which should be an indication that things aren’t as good as they might be. And I’ll be honest, that’s a tough thing to bear … it’s an equal opportunities condition ; for every Stride Forward there has to be an all Two Steps Back shortlist.  That said, she is seeing me because she is being very supportive at a difficult time: I went into my last appointment in the doldrums and emerged ameliorated and hopeful. Likewise, my latest session with Dr Mizara left me feeling emboldened and determined when I’d gone in full of self-doubt, self-recrimination and negativity.

Both doctors have provided reassurance and sympathy as well as medical insight. They’re convinced that the mental issues I had over Christmas were induced by acitretin and when I fretted that most people probably don’t need to be seen as often as I am by Dr Mizara, Dr McBride showed me figures that indicated many had had far more sessions, and that when everyone emerges from the derma-psychology tunnel the light is bright and warming (and probably ultra-violet too because it makes your skin better). Indeed, she even went to the extent of calling Dr Mizara (who was doubtless busy elsewhere) down to back up her figures and provide an extra ear; once again the call of duty was answered long ago and continues to soar so far above and beyond that I’m surprised I can still see it.

It may just be that I need a skin and brain transplant and I might finally get rid of this thing. I hadn’t done a blood test this week as I’ve been all over the place so I did one after seeing Dr McBride. I dread the results: she’s ordered a streptococcal test in case that’s been a contributor (I have had the odd throaty scare) but she’d be better off looking for traces of Sancerre. Since then though, it’s been healthy living, no booze, and plenty of exercise (bear in mind that “plenty” for me probably means a light bout for most, far more robust examples of humanity).

Dr McBride is right, we haven’t cracked it yet, but then I haven’t cracked either (apart from physically on various patches of my skin, but I’m used to that).