I previously posted about my first MS episode, when a neurologist (not my current one!) suggested I was legal to drive, even though I couldn’t tell whether a car was moving or not when I looked right at it. A lot of crazy things get said in a healthcare context! And a lot of really important things go unsaid, too. I don’t think anyone has articulated this better than one of my favourite bloggers, Dr Kate Grainger, who was diagnosed with terminal cancer in her 20s. I encourage you all to read her words about why she became an advocate for improved communication in healthcare and started the “Hello, my name is….” campaign. This campaign highlights how vital the “simple” courtesies are for making the person seeking care feel safe, respected and valued. Haven’t we all noticed the difference it makes when a nurse takes the time to introduce themselves at the start of their shift and have a friendly conversation, however brief?
Although it can be extremely difficult to be an effective self-advocate when unwell, good communication on both sides is critical in all sorts of healthcare decision making processes. If I don’t articulate my priorities as a patient, the people trying to look after me are likely to get it wrong. And if they don’t explain clearly their side of the equation, I’m not likely to make the best decisions nor to be satisfied with my care – whether or not it has been of the highest possible standard. It can be illuminating to have opportunities to observe the communication process from a patient perspective after half a lifetime of being a healthcare provider!
There are times when I look back and laugh at what I think I heard said to me (the comment on my driving ability is a good example!) and times when I have been left completely confused in my patient role. I’ve mentioned before that no one ever named what was going on when I was busy being diagnosed with MS – I can only guess that it was assumed everything must have been clear to me, given my own medical background. It was a soul-destroying experience to inject a disease modifying drug for over six weeks without being clear on whether or not I had confirmed MS. I really wasn’t sure. Maybe they were offering me treatment to prevent a first episode from becoming definite MS? Can a first episode go on that long and require multiple courses of IV steroids?? I turned the dilemma over and over in my mind for weeks before I got up the courage to actually ask my neurologist what my diagnosis was. I really needed to know, so I’d have something concrete to tell my family and friends! I’m not sure who was more embarrassed; me for having to ask such a basic question as “Do I have MS?” or my neurologist when he realised he’d not made my diagnosis clear to me when he wrote the first script. We both learned something from that conversation! He’s been truly fabulous about explaining things to me ever since then, and I think I’m better these days about asking questions when I need things clarified. Now, after more than a decade of practice, I think we’ve got our communication skills much better sorted in both directions!
I like to think that I may have become a better physician through my experiences of being a patient. One of the areas where I’ve really changed my approach is towards the “routine six month visit” for the person who’s basically doing well with a chronic illness. These days I am acutely aware of how I feel leading up to my own routine reviews with my neurologist. How the appointment assumes an almost unreal importance in my calendar. How I think about what questions I may have and wonder over and over how he will assess my progress when he sees me. How I am torn between wanting to hear him say I am doing well and wanting to know that he understands how MS impacts my life, despite how “normal” I look to most people. I rarely sleep well the night before an appointment! So when I see my own patients for their “routine” reviews, I now try to see that appointment in the way I imagine the patient may view it – as one of the more important half hours in their life. No matter how crazy a clinic turns out, I do my best to give even my most “unaffected” patients time to discuss the things that are important to them. And when I see my long term patients who are doing really well, I am careful not to assume that their outward success in managing their health is necessarily reflected in how they feel. Most of those reviews now start with things like “Your recent results are excellent and you look great from here – but how are you feeling?”
When I introduced myself, I wrote that I don’t think my patients have any idea that I live with MS. That’s true, but several of them have noticed something. I hope it’s something positive when they sometimes say things like “It’s really nice to speak with a doctor who ‘gets’ what it’s like to live with a chronic illness”. Like most people, I have a lot still to learn about how to communicate really effectively – whether at work or outside. But I suspect the experience of being a patient is one of my better teachers!
The Unaffected One