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rich emollient used in the management of eczema, psoriasis and other dry skin conditions.

26Sep

Last time I wrote on this blog I was in the middle of one of the worst flare ups I’ve had in a decade. I explained that it was largely due to stress and my despair at being unable to self manage had led me to decide to re-engage with the NHS and seek treatment. This is exactly what I did. My friends, one thing I think we all know in life and especially the NHS, is that patience is a virtue.

Back in August I trotted off to my local GP to seek a referral to a dermatologist. Having had psoriasis my whole life I understand that its really only a dermatologist who can help there patches are all over your body. My experience at the GP was probably one that we have all had.

It was a hot day back in August so I was wearing a sleeveless knee-length dress, exposing the large patches covering my arms and legs. I sat down and confidently said “I am in the middle of a massive psoriasis flare up as you can no doubt see for yourself, so please refer me to a dermatologist”. For reasons I won’t go into I was probably a little more boisterous than usual as I’d had to wait for 2 hours to be seen. The GP, who was clearly embarrassed at making me wait said yes that would be fine but proceeded to ask me a series of quite annoying questions. “Are you using any creams? Have you tried topical steroid creams? Are you under unusual amounts of stress at the moment?” With the confidence of someone who feels quite knowledgeable about my condition I batted these away explaining I was using commercial moisturisers and found steroid creams ineffective and far too time consuming to use when the patches are so widespread. And of course I’m stressed that’s why I’m in the middle of a flare up!

The GP then went to the computer and offered me two hospitals I could be referred to. “Ah!” I thought, “patient choice and no decision about me, without me in action, right here”. The two hospitals meant nothing to me. I asked if the GP could advise which one would be a better choice. “Whichever one is easier for you to get to?” I have terrible geography so I guessed and went with one and went on my merry way.

Later that week, speaking to my semi-retired Rheumatologist father I told him about my experience and the choices I was offered. “Oh, it’s a shame you went with that one, the other one has a world leading expert on psoriasis”. Herein lies the problem. What exactly is the point of “patient choice” if there is no one there to advise you with the sort of knowledge my father has, or why insist a decision is made there and then? I hadn’t expected to be given a choice of hospitals so I hadn’t done the research. A feeling of deflation at the prospect of being lumbered with second best settled on me.

A few weeks later I got my referral letter. I had been called by the dermatologist for an appointment on 1st October. The letter arrived mid-August. It’s now the end of September and a combination of reduced life stress, half a tub of aqueous cream and a new soap free body-wash appears to have wrestled my psoriasis back under control. I began to wonder if I should cancel my appointment.

A few weeks ago I had a chance encounter with a representative of a patient group for National Ankylosing Spondylitis and got talking about my own experiences with the NHS. She strongly recommended I go as once you are “in the system” it’s much easier and quicker to be seen when another flare up hits.

My appointment is on Monday. My patches are still there but fading to a brilliant white rather than an angry red. I will go and I will explain my situation and hopefully, come winter, when it will flare up again, I can get my UVB light treatment. So here I am: patiently waiting to become a patient once again.

  

2 Responses to The Patient Patient

  1. Russ Cowper

    Hi Jennifer

    Im pleased to her your flare up is now in remission.

    The comments about “being in the system” are very true and totally accurate. As a persons whose Psorasis is very agressive very difficult to control, i need almost immediate access to my dermatologist. I can virtually overnight become severly eythrodermic which can cause real problems.

    Because of my condition and the drugs im on to control it i have an understanding that i can turn up unannounced at my hospital at any time and be seen straight away by either my Derm, my specialist derm nurses or the derm ward staff. I have literally turned up at hospital unnannounced and been given a bed 15 minutes later.

    GP’s for all there knowledge are not specialists. I have given a talk on Psorasis with one of my specialist nurses and my GP was in the audience.

    So my advice would be attend the appointment, get into the system and ask for regular referrals. Psoarsis by nature is unpredictable, you never know when a flare will strike.

  2. James

    Hi Jennifer,

    Very insightful article. Especially concerning the process of the NHS referral system.

    I am going through the joys of that at the moment.

    Good luck for the future.

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