When medications are necessary but not sufficient…

I love the question “I’m really interested to hear what things you have been doing or have tried already to manage your [symptom]?”

I always share it with medical students when I am lecturing, and use it a lot in my role as a self-management coach, when supporting individuals. But recently, the answers I have received in conversations locally have made me question our approach and thinking as a system to managing pain. It was summed up for me in a conversation I had with someone who wanted to manage their pain better. I asked what they had done already to try and manage the pain and a list of medications followed. After asking them about what other ideas they might have about how to manage the pain, I asked if I could share some ideas that other people have found helpful. After they agreed, I mentioned things like breathing and relaxing techniques and pacing, as they hadn’t been brought up in conversation so far. With all the ideas summed up, I asked what the person’s thoughts were, and their answer left me shocked…

I don’t think the suggestions you made will work, because if they did work my doctor would have suggested them to me already!

Wow. I wasn’t quite sure what to say next!

Medical science and the clinicians perspective was obviously important to this individual (unsurprisingly perhaps, given their age and generational attitudes), so I needed to respect that. We talked more about why they wanted to manage the pain, and how important that was to them, and that perhaps having more information about other ways to manage pain might help. Cue Pete Moore’s Pain Toolkit.

So often when asking the question about ‘what are you doing to manage your health at the moment?’ I am presented with a list of medications, the usual suspects of pain relief medication that become very familiar from my own experience and after three years working with people with chronic pain. Medication is good and can help – don't get me wrong. It is very clear to me now that medication in the context of long-term conditions is often necessary but rarely sufficient.

We need a much broader conversation about managing pain that looks at other approaches, even simple things like pacing and relaxation techniques. I am amazed how many people haven’t heard of either of these approaches, even after quite a long time of having to live with their symptoms.  Starting to expand the conversation around medications to include follow-up conversations about taking them in the most effective way rarely happens from the experiences I hear about, but can be really important. For this, medication usage reviews (MURs) at pharmacists can be brilliant.

The very clinical focus of doctors I had seen in my own experiences as a patient with long-term conditions focused on prescribing me medications. That was where the conversation stopped, as reviewing them never really happened – I had to proactively prompt that. This focus on medication (from my clinicians and a general cultural expectation) made it hard for me to get to the point when I began to look into other things to help me manage. If the conversation had broadened earlier in my journey, it would have been easier to warm to the idea of having to do other things to manage my symptoms.

If as clinicians, you feel frustrated that patients might not be taking responsibility for their health and self-managing, ask yourself… where else might they be getting these messages from, and am I giving them these messages in balance with talking about the tablets they need to take? If as clinicians, you are just talking to them about medication; understandably, there will be resistance when other options are tabled that require them to play a more active role.

I don’t think the suggestions you made will work, because if they did work my doctor would have suggested them to me already!

A patient’s narrow understanding of what to do * might * well be a reflection of a clinician’s narrow presentation of ideas to support them!