I was asked recently by The Psoriasis Association if I would speak at the Royal Society of Medicine at a conference called Medicine & Me: Psoriasis. It was a privilege to be asked and made for a very interesting day. There was so much said there about psoriasis that I didn’t know and I will try to write some of this up soon, especially with the advancements of understanding the condition and treating it. For now, I thought I would simply post my speech, well how my speech started out. I was a little nervous and after hearing from other speakers I changed a few things to fit in with what had been said. The essence of my speech didn’t change and the topic I was asked to speak about was Access to Care. To illustrate access to care I decided to talk through my ten years plus of experience of care under the NHS.
Good afternoon, My name is Simon Jury and I have lived with psoriasis for over ten years, varying from a small patch on my leg to 80% coverage and some periods of total clearance and just to top it off, I have now had psoriatic arthritis for about 3 years. I thought the best way to talk about access to care would be to talk through my experience of having the condition treated.
The first diagnosis by my GP was that it was a fungal infection and the best thing to do was put some savlon on it. I was made to feel that I had wasted the time of the GP and should not have bothered them. I decided to ignore this advice and instead asked the local pharmacist for something to fight a fungal infection which, as you may guess, had no effect.
A couple of years later I had moved back to Essex and changed Doctors which seemed to be good timing as I suffered my first major flare up whilst on holiday. I say good timing as my new GP was much better. I was immediately referred to the Dermatology department and prescribed a topical treatment, Dovonex, to ease the condition, along with Diprobase and Balneum bath oil. Unfortunately, my skin had already become infected where it had become cracked. I was then put on a course of antibiotics before resuming the topical treatment while I waited for my hospital appointment. My GP has been excellent throughout my experience with this condition, he has seen me at my very lowest, helping me to avoid the use of anti-depressants and allowing me to make appointments just to talk things through when I feel things are becoming too much.
It took about 6 weeks from referral to get an appointment with the Demartology consultant and the first appointment was very positive, my skin was so bad then it probably made the decision quite easy and I was referred immediately for light treatment which gave me nearly two years of clear skin. I did think a little naively that I was cured and psoriasis would never come back. It was only explained to me after my second flare up that this condition is likely to be with me for life. I have also discovered after three courses of light treatment that it seems to become less effective with the last course only given me 6-8 months of treatment. I did notice though that only on my first course, was the treatment stopped after full clearance. The following courses were finished while I still had some minor patches remaining.
The nursing staff I have come into contact with during three courses of light treatment are, in my experience, the most knowledgeable and supportive. They were the first to really explain to me what psoriasis is, how to manage it on top of whatever treatment I was having. They, like my GP, made me feel human and like someone cared.
It was the nursing staff that discussed the use of Dithro-cream with me after being prescribed this by one of the consultants. I was given a 0.1% strength prescription and told to use it until finished. When this had little effect I was given one more prescription. One of the dermatology nurses said that it was more common practice to be given differing strengths and to start with one, then reduce the strength on the next application as this had more effect. This was my first experience of being mis-informed about treatments.
I have been on Dovobet for several years now and have to admit to be totally confused now over it’s use. I have been told by one consultant I can use Dovobet practically continuously as long as I only use one tube a month. Another has told me I should use for a maximum of one year and another told me it should be used for six weeks maximum. The main problem with receiving mixed messages is you don’t know who to believe. As a patient you put a lot of trust in medical staff and if we are being told different things, we lose that trust as we do not know who to believe. This leads patients to the dangerous world of the internet and search engines. Communication and reliability of information is definitely an area that needs improving.
I thought it would be useful to mention my most recent consultation in March. It was a difficult time for me as I had not been sleeping for about a month due to my skin being extremely sore and itchy and it was all over, not just the parts that looked bad. There had also been some very difficult times in my personal life at the time and I felt like my psoriasis was about to spiral out of control again. The appointment started nearly an hour late and once I was in it felt rushed. The consultant only wanted to see the worst parts of my psoriasis, being my legs and even though I was asked how my psoriasis was affecting my life, I felt that they were not really listening, more that the question was asked to tick a box. I was told, “well it doesn’t look bad to us so there isn’t much we can do”. I had not felt good when I went in and as I left, I felt even worse. I really felt at this point that no one really cared.
I was prescribed a dovobet/coal tar solution and five months later I finally received it. I am aware there is a supply issue with coal tar but only because I was about to make a formal complaint and suddenly the hospital moved into action. I did find out that the pharmacy had tried to contact dermatology several times to ask if there was an alternative they could prescribe and, even with a complaint looming, dermatology have never responded.
I have been left fairly unimpressed by my hospital as they also moved my appointment, calling me on a Sunday to come in on the Tuesday to then be asked Monday evening to bring the appointment forward to earlier in the day because the consultant had personal commitments. Surely this would have been known when the appointment was made only two days before. I also had commitments; it’s called work, and had to cancel the appointment which the cynic in me wonders if this is what they wanted. I do feel if I had turned up, I would have been told again my skin isn’t bad and just be referred back to my GP, another box ticked. The one thing this recent experience has shown me is that when your psoriasis is somewhere between mild and severe, it seems very difficult to treat. The hospital was not interested as they didn’t consider my condition severe, yet my GP didn’t want to treat it was it wasn’t mild enough.
I understand that in the NHS, budgets are tight and this puts constraints on time and availability of treatments. I am sure this causes a lot of the issues I have experienced. I feel there are some simple things that could be done when treating a psoriasis patient. I feel an holistic approach needs to be taken. I am a person, treat me as such, do not just look at my skin. If my mental health is an issue, which I would assume is why the questions are asked, do not ask me for the sake of asking. I would rather you listened to me and understood what this condition does to me. Just because my skin may not look too bad at the moment, it doesn’t mean I am not suffering in other ways like sleep deprivation, anxiety or depression. These are not separate issues, they are caused or sometimes worsened by psoriasis.
It is clear from the consultations I have been to that my history with psoriasis is not known. I have seen the same consultant only twice, other than that it has been a different consultant each time, one of who, after admitting that psoriasis wasn’t one of their specialties and they were just filling in, had to keep popping next door to speak to their manager to be able to answer my questions and decide a course of treatment.
I understand that there is a lot of pressure on the time of the consultants which can make appointments seem rushed. This makes me wonder if there is the need to see a consultant each time you visit the hospital. Would it be better to see them on the first consultation and then have follow up appointments with a nurse, especially if your condition becomes less severe. I have experienced this with my psoriatic arthritis appointments and found it to be very beneficial as I saw the same nurse several times and during those appointments our conversations become more open and honest. Also as the appointments were almost on time, I was not so stressed. Seeing the same person each time also makes you more comfortable and with psoriasis that is something you don’t often feel.
Whilst referral’s for me have been very quick, speaking to fellow patients I do feel the process needs to be reviewed. Psoriasis seems to be such a difficult condition to treat, I feel GPs should be encouraged to refer you straight away, dependent on severity and the consultant should be allowed to refer you on to another department, such as psychology or to the arthritis clinic, if like me psoriatic arthritis comes arm in arm with psoriasis. Also as Psoriasis is for most people, a life long condition, why do I keep being referred back to my GP just to have to be referred back again when I have another flare up.
Given my personal experience of clinics and talking to friends with the condition who visit other hospitals, I would like a wider choice of hospitals to be referred to. When I was last referred, there was a choice of three in Essex. I think the area should be widened, why can I not take the short trip to London or another hospital where the psoriasis treatment seems to work better.
I would like to finish by mentioning the NICE guidelines. They are a nice idea, actually they are a great idea. If you want to know what I want and need as a patient, read the guidelines, it’s all there. More importantly though, don’t just read them, follow them.
Thank you to The Psoriasis association and The Royal Society of Medicine for inviting me to speak.