Letter to my patient #2: Communicating Pain

Sometimes it takes an outsider with a fresh perspective to point out the obvious. When you work in a closed system for years, strange customs are accepted as normal, and it can be hard to imagine alternative ways of working. It’s only when you hear an outside take that the picture becomes clear. I had one such lightbulb moment at the SPaRC (Scottish Pain Research Community) meeting last year, when I was giving a talk about an audit I had just completed. This was a simple patient satisfaction survey – I asked patients if they liked having had their Pain Clinic letter sent directly to them, rather than the standard practice of a letter to their GP. Overwhelmingly, people said they preferred receiving a letter. I was feeling pleased with myself that this fresh idea of communicating directly with patients had gone down so well, but then came a question from the audience that took me by surprise. The question came from a young academic who worked outside the NHS. This is all very interesting, she said, but what is so special about what you’re doing here? Are all clinic letters not already sent directly to patients anyway? Why would they not be? She seemed genuinely perplexed. As I answered along the lines of, ‘well, you would expect so, wouldn’t you?’ it hit me with a sudden clarity that the way we (clinicians) have always communicated with the patients we see (i.e. not at all) is really quite absurd. I’ve no doubt it will change in the future, but for now there is still a lot of resistance to change from clinicians.

Where does this resistance come from? There are practical difficulties in making the transition from clinician-clinician to clinician-patient correspondence, some of which I touched on in my last column. It takes a conscious effort to avoid medical jargon, abbreviations, etc., and communicating complex medical concepts in layman’s terms is not easy. When healthcare professionals speak to one another they rely on the assumption of a shared body of knowledge, but no such assumption can be made when speaking to a patient. It takes skill to write with sensitivity about emotional and psychological distress. But I wonder if there is something about the nature of chronic pain itself that makes it so hard to communicate with patients in this way – something that wouldn’t be such an issue if a cardiologist, say, were writing directly to a patient with the results of an angiogram.

If I were to receive a letter from a clinician about a medical problem, I would want that letter to give me a clear diagnosis, a well-defined treatment plan, and some reassurance that things will get better. When it comes to pain medicine, we can rarely offer any of these things. While we can help people make sense of their experience of persistent pain, we can rarely give a definite diagnosis. There is no blood test for fibromyalgia. An MRI scan might show wear and tear changes, but that isn’t enough to explain why someone is incapacitated with back pain. While we can suggest a treatment plan, it won’t be definitive. We know that medication rarely helps much in chronic pain, particularly in the long term, and the more sustainable management options, like pain management programmes, are complex interventions that are difficult to describe in a few words. As for reassurance – well, I am always hopeful that things can and will get better for people I see in the pain clinic, but my definition of better may not be the same as the patient’s. Patients want their pain to be gone, but often the most we can offer is help in managing the pain, so that life is richer and the experience of pain is less overwhelming.

Like most people, clinicians struggle with uncertainty. Medical training is very much based on diagnosing and fixing problems. I can’t speak for all clinicians, but I’m confident in saying that doctors feel very uncomfortable when faced with a problem they don’t fully understand, and cannot fix. I suspect that all of this makes writing a pain clinic letter to a patient much harder than writing to a patient with the result of an angiogram. But hard is not the same as impossible, and the challenge of confronting these difficult topics with honesty can (I think) be beneficial to the clinician as well as to their patient.

In future issues of Pain Matters I will be exploring some of these tricky topics and reflecting on what I have learned from the process of writing about them in letters to the patients I have seen in the pain clinic. As I said in my last column, I would love to hear from readers about their experience of communication from the pain clinic (or any other clinics), good or bad. If you have received a letter from a clinician, has it been helpful in any way? What could make it better? What do you wish had been covered? What topics would you like to see covered here?

Lars Williams

You can write to Lars Williams c/o Pain Matters, email: editorial@painconcern.org.uk.