I was chatting with a friend recently about psoriasis and something came up about talking to people about the condition. They asked me what was the thing I find most annoying when talking about psoriasis and I replied “when people ask about it like they care but don’t really listen to the answer”. It’s something that’s bugged me about my consultant appointments. This also got me thinking about who really does listen and for me the results are a little depressing.
Let’s start with those who listen. The Psoriasis Association are the first. They work tirelessly to add volume to the patient’s voice, helping with research, listening to patients concerns and, importantly, understanding what the patients go through not only with condition, but with the frustration in getting the right treatment.
Next on the list is NICE. The organisation that listens to patients, charities and support groups to push changes in the way patients are treated. They do sterling work and I feel maybe have the same problem as many patients, wondering if the people that can make the changes are really listening.
The Mental Health Foundation listen to patients, they recognise that psoriasis causes as much mental issues as physical. They have helped, alongside the Psoriasis Association, to push for changes in the way we are treated. The “See Psoriasis: Look Deeper” campaign is testament to this. Explaining this as briefly as I can would be to say “Don’t just look at Psoriasis, listen to the patients, understand the pain this causes them inside”. You can read more about the campaign here.
Family and friends listen. They want to help, they want to understand. Sometimes us patients have to remember we need to actually talk to them. You may say your family and friends don’t understand but have you actually explained properly what is going through your mind and exactly how much this condition affects you?
Some may find the next on my list a little surprising, pharmaceutical companies. Yes they do listen, they support patients, offer advice and also push for change in the way we are treated. I hear a lot of patients say that the pharmaceutical companies are only in it for the money. Having met quite a few representatives of the industry and seeing the work they do I have to disagree. Funding projects which they are not allowed to advertise with, spending a vast amount of money in promoting well being and focussing on patients needs for no advertising is something you wouldn’t find a lot of companies doing in other industries. By listening to patients they are trying to improve their products and not just make more money. I know there will still be some cynics out there, just remember this, in the UK you cannot sell or advertise prescription medication direct to patients so ask yourself “what’s in it for them?” It certainly isn’t increasing sales, well not directly.
My GP listens to me. I can’t talk for all GPs around the country and I have met others who I know have specialised in dermatology. My GP stopped me from full on depression, stopped me falling into a dependency of anti depressants. All because he listened to me. He understood at that moment just how much this disease was killing me. Yes I know psoriasis is not terminal, it certainly would have killed me though if I had not been pulled out of the despair I was in. All from someone asking how I felt and then acting on my response.
The last group I can think of are nurses. The few people who physically treat us that actually listen to us. When I have gone for light treatment they ask questions, they make notes, they chart your responses. Okay so you could say they write it down, doesn’t mean they listen. I know they listen as the next time you see them they ask further questions, they know how you felt last time, they pick up on your mood. You are not just another file and another number off the waiting list.
Sounds like quite a few people listen then. So why should I have any complaints? Back to the start of my list, the Psoriasis Association cannot advise me on which treatment is right for me, they cannot prescribe a treatment for me. NICE are in the same position, they can suggest to healthcare professionals how I should be treated, they cannot enforce that and again cannot prescribe a treatment. The pharmaceutical companies can make the treatments, I cannot go to them and ask for a bath load of ointment and, yes you guessed it, they cannot prescribe a treatment. My GP can prescribe certain medications up to the point where my psoriasis becomes severe and they have to refer me. Not because of a lack of knowledge, due to procedure and process. The nurses cannot just let me have some light treatment when I need it or feel like it, they need instruction from someone.
Who is left off my list of who listens? The consultants. Now before I start on this, lets make one thing clear, I can only talk about the consultants at my local hospital and I have been lucky enough to meet consultants from other hospitals who are taking great strides to improve treatment of psoriasis patients. My experience has been to be asked questions to which my answers seem to have no relevance. I have been asked how my day to day life is affected by this disease to be told, “oh well, it doesn’t look so bad so we’re referring you back to your GP”. I have been in a five minute consultation which only lasted 3 minutes, asked numerous questions, not looked at and told I would get light treatment. Quite clear that the treatment had already been decided on and I could have just as well not have turned up, they may as well have just referred me on. My point really is that the person who can really make a difference and decide what is the best treatment for me doesn’t really listen.
My frustration with this disease continues to be exasperated by people asking me questions and not listening to the answer. I could have diagnosed myself exactly as the consultant did since my first light treatment course. It would save a lot of time and money if I just referred myself and didn’t bother the consultant’s time. My view is and has been for some time, do not bother asking a question if you are not going to listen to the answer.
So, you are reading this post, you may even look at the pictures on the images tab. I ask you this, are you listening?