OK, so in my last blog posting I started explaining how I felt I had lost control of my health and my life, and how it was not the fault of my doctor, or any of the other health professionals I deal with. I understand what happened to me, but I was a bit short of ideas on how to deal with it. Now this is a bit embarrassing for me, because I work for a health charity, and I am supposed to promote the idea of people with long-term conditions taking control of their lives and their conditions. Of all the people who should be able to deal with this, I should.
So since I last posted, I have started getting better. I have taken my inhalers religiously (despite it giving me headaches and a really hoarse voice – a bit like a Scottish Orson Welles), and I have avoided triggers like sudden changes of temperature (again difficult to do when it is -5°C outside and you have to walk the dog three times a day), but my peak flow is up to where it should be according to my height, age and weight (although not back to where it was before I got ill), and my cough is an awful lot better.
I went back for a check-up with the asthma nurse, she checked my peak flow, she checked my inhaler technique, we talked about triggers and way to avoid them; and then she asked me how I was feeling. It’s such a glib question: “How are you feeling?” “How are you?”; who actually answers that question properly? No-one. In fact, if you ask that question and someone actually answers it honestly, you feel like they have in some way over-stepped the mark: “How are you feeling?” “Well, I am anxious about my lack of control of my asthma, and I feel great uncertainty about my future, because I don’t want to have a disability hanging around me, I really want to get better”. You would look at me like I was mad.
Nevertheless, I decided to break with the tradition of saying “Fine, fine, nothing wrong with me…” and I actually talked to her about how I felt. We had a conversation about how I felt I had lost control of my situation, I somehow felt that the doctor was maybe to blame, but rationally I knew that this was not the case, and basically we covered everything that I talked about in my previous post. And she was delighted to hear it. She excused herself for a moment, and went to pick up a couple of copies of the Nursing Times, one of which had an article on the pivotal role of communication as part of a therapeutic relationship, and another which had an article about the predictive validity of a good therapeutic relationship in the successful recovery and continued wellbeing of patients presenting for treatment (for any statisticians reading this, yes I did say ‘predictive validity’. I will try and find the article and post an abstract link or summat).
What she was trying to get at was this: doctors and nurses cannot make you better by remote control. They work together as a team to achieve the best outcome possible for the patient, but there is another member of the team who has an important part to play, and that is the patient. We (as patients) have all these preconceptions about medics: they are far more intelligent and important than we are; they understand things differently to us and we can’t talk to them on their terms; we shouldn’t bother them with our petty troubles because underneath it all we are fine. That is the wrong attitude. If you want to make good use of your doctor or nurse appointment, you need to talk to them properly.
If you’ve not been taking your medication as prescribed, you need to tell them the truth. If you’ve not been doing the exercise you said you would, you need to tell them the truth. If you can’t stop smoking because you find it too hard, you need to tell them the truth. Medics are trained to communicate clearly and effectively with patients and with each other, to describe conditions and treatment options comprehensively, but one of the biggest barriers they face is that people don’t want to tell them the truth, either because they are embarrassed by it, or because they don’t want to bother the doctor with it. They can’t help you get better and stay healthy if they don’t know what the problem is, and that is to quite a large extent the patient’s job: to tell the medics what the problem is and how it affects them.
It can’t possibly be that simple can it? When they ask you how you feel, you answer the question honestly?
Er, yes… it can be that simple.
Health professionals are trained to communicate sometimes very complicated concepts and information to people in a way that they can understand, and in a way they can comply with. Patients, on the other hand, are unnecessarily embarrassed about their conditions, and tend to put doctors on pedestals. I saw this first-hand not too long ago, when my Dad was in hospital. He was telling me a big long list of aches, pains and complaints, and in the middle of this his consultant arrived and asked how he was feeling. He said “Oh, I’m feeling much better, really nothing to complain about”. The consultant had far more use for my Dad’s list of aches and pains than I had, but my Dad wouldn’t tell him. Why? “Oh, he’s a busy man, he’s got lots of patients to deal with.”
But there is more to the communication issue than that. Some people think they want their doctor to tell them what is wrong, and then give them a cure for it. That may work for something simple like antibiotics for a chest infection, or antacids for a stomach problem, but what about more complex stuff like managing a long-term condition? The doctor can tell me what’s wrong, can tell me what to do and what medication to take, but is it a good solution? Does it manage the situation well? Not really. The problem is that I need to be able to manage my own health
If he tells me what to do, I might choose to reject his advice. If we discuss my problems, what the options are, and agree a course of action, it is far more likely that theagreed course of action will become my attitude, and then my behaviour. Salesmen have known this for years: don’t try and sell people things they don’t need by telling them they need them; find out what the people want, then work on turning that want into a need.
I want to get better. I want to be able to run about with my dog and not get breathless, I want to be able to play and sing at the same time, I want to sleep right through the night without waking up short of breath, I want to be able to tolerate air conditioning again. So the nurse I have been talking to has been working on what I want. Walking the dog is good exercise, so build that up, have a wee run about but don’t get too breathless. Pace yourself when you’re gigging and avoid the smokers. Plan your exposure to air conditioning – where is it, and how long are you going to be there? We talked a lot about what I do before I go to bed, and how to make sure I sleep through the night (I don’t have obstructive sleep apnoea – we checked!).
And it is working. I am now down to a tiny dose of corticosteriods at night, I sleep through to about six or seven in the morning, and I haven’t had to use my reliever in weeks. It is working.
