Shedding Cumbersome Blog Titles – a trip to Parliament, some amazing canapes, and so light at the end of the tunnel (that, for a change, isn’t ultra-violet):
This week I went to the House Of Commons to address a group of human beings and MPs about psoriasis, as part of the See Psoriasis: Look Deeper campaign. We had a briefing in Chancery Lane beforehand, and then gathered for a buffet lunch (no sausage rolls and limp vol-au-vents here – roast salmon, brie and avocado and yum-yum-yum were the order of the day) for those of us who were being taxied to parliament. Those present for the high-end comestibles included medical professionals such as my consultant Dr McBride, and Dr Bundy from Manchester – my close ties to that city mean I will be working with the latter at a medical conference in December (funny how these things sometimes work out and slot neatly into one’s existing schedule). Other finger food beneficiaries were representatives of the Psoriasis Association (including the head honcho, Helen McAteer), the Mental Health Foundation (including head of policy Simon Lawton-Smith), Weber Shandwick (the PR firm handling the event), and (a nice touch, this) some fellow sufferers. Even though the food was delicious, it wasn’t all hovered up – psoriasis sufferers are like that: even though we probably wanted to gobble it all, we held back (this isn’t romantic faux-humility by the way – I’ll fill you in as to why in a future blog).
And so to Parliament. It was a bit like queuing for customs (plastic trays, hat removal, X-ray machine), except we got a lanyard and no-one wanted to steal my nail clipprs or demanded that I put my moisturiser in a plastic bag. Dr McBride noticed that one of the security staff had a bit of scalp psoriasis – she’s as eagle eyed about potential patients as I am with character actors for 1960s and 1970s British television (I spotted Arthur Cox on the tube the other day and had a chat don’t cha know).
While we waited to be shown through to the dining hall Danielle from Abbots (the company who have sponsored this initiative) pointed out the crack in a statue’s sword: which was the result of security once having to remove Emmeline Pankhurst who had chained herself to it. As we observed this piece of history, a security man asked me to take my hat off. For a moment I shared Emmeline’s sense of oppression. Dr McBride showed me one of the bound booklets containing all of the postcards sent in by psoriasis sufferers (part of the campaign has involved this epistolary communication between sufferer and disease). How inventive and moving they were. Some sad, some angry, some resigned, and one reminiscent of Stockholm syndrome, ending as it did with a profession of love for the blighter. I found that most affecting of all – what sort of a benevolent soul must you be to turn the pain and despondence this disease causes into a positive emotion? The writer of that card is a better person than I could ever hope to be. The simplest and pithiest were the best: I was actually disappointed that my rambling effort hadn’t been lost, cropping up as it did at the end (I note too that I was one of very few who actually signed their card, as most were anonymous – always after a credit, narcissistic thing that I am).
Parliament had obviously got wind of our top notch lunch as when we got to the dining room, the canapés wheeled out on slates with slashes of brightly coloured dipping sauces providing visually attractive flavour enhancement, featured such heady delights as smoked salmon, wild boar pate and halloumi in tiny morsels of delicious artistry. I have to say, if they get food of this quality all the time, it’s no wonder certain politicians consider us to be plebs with our tinned ravioli, hob-nobs and spam. The room had been decorated with a tree onto which the postcards, with their honest testimonies, had been placed. Individual cards had also been mounted with sections transcribed and highlighted in big writing like a newspaper sub-heading. I was alarmed to see my illegible scrawl among their number. At least the quote they used (“I lived with you for years assuming that I just had to put up with it, but when my wife met me she told me that I was worth more than that and that I should take you on”) gave credit to my dear Katherine who has been the one encouraging me not to hold back in my quest for treatment and help. I was especially impressed by a series of cartoons by a lady I met (but whose name, I’m afraid, escapes me) which were brilliantly rendered and full of good humour. A most imaginative way of expressing those conflicting feelings we all have.
I chatted to Dr Linda Papadopoulos off the telly – she was lovely and put up with my blather for ages; she was empathic and clued up on all aspects of the campaign and the psychological make-up that goes with the illness. She also clearly has the patience of a saint as I ceased to be interesting about two minutes into our lengthy conversation but despite knowing this my mouth carried on moving for what must have seemed to her like hours. When someone shows the vaguest hint of understanding regarding psoriasis it sets something off in me which turns me into Ted Stryker, the hero of Airplane!, banging on about his relationship troubles. I also met a couple of other bloggers, Simon, and Jess; click on their names to read their writings on this subject, as everyone’s perspective is useful, and you never know, their experiences may chime with your more than mine do.
Then it was time to subject everyone to the monologue I’d just imposed upon the long-suffering Dr Papadopoulos. I deliberately hadn’t learnt as speech as everyone else had facts and figures that they were obliged to reel off, so I felt it’d be better if I just spoke honestly. I had key things that I wanted to cover of course, plus some trite wordplay and mock self-deprecatory humour. I had been given exactly seven minutes to say my piece, so I set my iPhone to Stopwatch and got ready. We were introduced by Sir Paul Beresford MP, and it is fair to say that without him, we wouldn’t have been given voice in such hallowed surroundings, so eternal thanks to the Right Honourable Member for Mole Valley. Helen and Simon went first, outlining the key points about the campaign from their respective organisations, and then it was my turn. I started with the jokes. They went OK. I then talked out what it was like having the disease, trying to make the point that because it is not cancer, the sufferers are reluctant to moan about having it, and such a continued focus on staying emotionally chipper and physically blocking out the pain takes quite a mental toll. It was going OK and I could see some people nodding at my anecdotes, but then the parliamentary voting bell went. And went. And went. I talked over it, but it hardly helped to sell my message. I feel like a leper most of the time – I didn’t need democracy to rub it in by ringing a bell. Then it stopped. And I launched in again. And so it started again. I made a quip that it was being both irritating and persistent, making it the audible equivalent of psoriasis – this got a nice laugh and helped steady things, but by then I’d forgotten so much that I sort of lost my way. I looked down at my stopwatch to see how long I had left and realised that I hasn’t pressed start, so I meandered to a close and introduced Doctors Bundy and McBride. It wasn’t awful, but it wasn’t the job I wanted to do, and I lost several points in the melee of ding-dongs. Everyone else felt the same, I know, because everyone forgets things when public speaking, but the reason I was there is because I am supposed to be good at it.
The real meat (apart from that in the wild boar pate) came from the professionals, and I will outline some of the things they highlighted in my next blog. What really hit home to me was how lucky I am that I stumbled upon the Royal Free Hospital. Most psoriasis sufferers get nothing like this level of care and expertise. The fact that I do has changed my life. Immeasurably. Palpably. Fundamentally. And to such an extent that I get quite tearful about it. Only this time when I cry the tears don’t hurt the raw, dry skin on my face, because it has receded. I hope that after today, everyone will be able to benefit from similar treatment. Tell your MP, and tell your GP, that if they see psoriasis, they need to look deeper.
More details about the campaign can be found here.