I’m currently working as a junior doctor in a subacute hospital, on the Neurology Ward. Our in-patients come in for symptom management, and sometimes end of life care. Conditions include motor neuron disease, Huntington’s disease, multiple sclerosis, and the Parkinson Plus ‘three ugly sisters’ (although I’ve only seen MSA & PSP in my time here).

What a terrible group of diseases. There’s nothing like working on this ward to make you want to find a cure, or at least a way of slowing down the often rapid progression of these debilitating life-sentences. Given the lack of cures on offer, quite a few patients have gone out to alternative health providers, and are taking a large range of herbal supplements, crystals, homeopathy, magnetic therapy…. the list is endless. Understandably, they will do everything in their power to change the course of the relentless disease.

I admitted a patient yesterday, with MND. Confined to a wheelchair, with non-invasive ventilator support for up to 18 hours a day, he asked whether I had “a pill to make me stronger”. I said that I didn’t. “How about steroids?” At first I thought he meant ‘roids, the sort body-builders take. “No, not those” – he clarified – steroids, like his wife took for her fibromyalgia. She was weak, then took steroids and became better. I explained the different pathologies and that although we knew steroids helped fibromyalgia, we hadn’t yet found something that effective for MND. “How about stem cell therapy? The Government is trying to put a stop to that, aren’t they?” I acknowledged that stem cell therapy was a field of ongoing research, with potential, but as yet it was not the standard of care. I hadn’t heard that the Government was trying to put a stop to it; privately I thought they were busy enough stopping The Boat People, Gay Marriage, and Sharks Off The Coast of Western Australia, and probably didn’t have enough time to stop stem cell therapy too. “Well”, my patient finally said, “I take these from a Chinese medicine doctor”. ‘These’ turned out to be six large bottles full of very large pills, of uncertain vintage, uncertain ingredients, prescribed at frequent intervals. “They helped for a bit, but then started to not work as well, which he said could happen, so he’s now doubled the dose. Do you think they work?”

…

Reading the excellent article by Dr Colin J Mumford (JNNP 2014)1, titled ‘When patient opinion and clinical science are implacably opposed: the view form an MS specialist’, highlights that this challenge is faced the world-over by neurologists (and all doctors) when treating people with devastating diseases. Given a realistic (often bleak) outlook from us, people seek out sources they’re comfortable with: YouTube, tabloids, and current affair programs of varying credibility. Anecdotes about ‘my father’s-golf-partner’s-step-son’s-friend’ and ‘a-friend-of-my-aunt-who-lives-overseas’ speaks at a level understood by our patients far better than do our elite journal publications. Access to these journals, both in terms of knowing how to get a copy, and then understanding the content, is difficult without some sort of scientific or medical background.

I feel we have a duty to spend time with patients, ask about other treatment options they’ve explored, and where possible, discuss why our brand of medicine does not routinely offer these. If there’s scope, maybe even discuss why we set up trials the way we do, why we trust the results of multicentre double blinded RCTs more than anecdotes, and why we receive even our own ‘novel’ treatments with a degree of scepticism.

Perhaps go even further, and as Mumford urges, that we address these issues in a much larger forum; that we “embrace opportunities to exploit radio, TV and the internet whenever possible”. Have you got an opportunity to set up information sessions for groups of your patients? Perhaps there’s a support network with regularly meetings that you can attend to discuss new and upcoming treatments? Or maybe you can do it online, via FaceBook groups or other social networking pages designed for patients? Write in to the local current affairs program that has espoused the virtues of the latest wonder drug – give the ‘other’ view.

1 – ‘When patient opinion and clinical science are implacably opposed: the view from an MS specialist’, Mumford, CJ. J Neurol Neurosurg Psychiatry 2014;85:125-126 doi:10.1136/jnnp-2012-303857