Firstly, why the incredible hesitancy among some medics to flip the pyramid? Or at least break away from the Beta-interferons/Glatiramer Acetate as ‘safe’ fallback options, even when the research suggests that these days, the older first generation drugs give suboptimal outcomes compared to the modern crop.
The MS neurologists that I spoke to all advocate versions of outlining the options (subject to suitability) from Rebif to Tecfidera to a Mab, often sending the patient away to think about it and allowing them to choose. This must be a new thing, as in all my other interactions with a doctor they have never told me the choices and then passed the decision to me. From simple chest infections to MS there are normally protocols, sometimes with flexibility within them. For example: I recently got Clarithromycin (BD) rather than Amoxicillin (TDS) as I told my GP that I was forever forgetting the midday dose.
I queried why some clinicians were often hesitant about recommending Stage 3 therapies if they weren’t contraindicated and one MS Team member went straight to mentioning the two people in the UK that have ended up on ventilators after taking Alemtuzumab! They then put this in context, but it shows where the brain goes. We are hardwired to look at the worst case first. It is an evolved mechanism of self-protection and is normal. However, I felt that I had to press them to contrast this with the number of people that have benefited from it, the ones you don’t hear about. When I suggested that the risks involved in being in a motor vehicle were quite high but that we don’t feel it as much and don’t really consider the risk versus the utility, that was a novel thought for them regarding a way to contrast risks.
Secondly, the influence of Doctor Google and the wide availability of other unfiltered and non-contextualized information sources is a great silent issue. Silent insofar as what a patient shares with you is generally the tip of the iceberg. Rest assured that there is a mountain of information in their head; some good, some bad.
I appreciate it is often the norm for a patient to produce a whole heap of printed info from Dr Google during a consultation. In addition to this you can be sure that they have been fretting away – understandably – from the very first hints that it may be MS that is causing them issues. In my time one spoke to friends and family. These days the Internet has allowed simple accessibility to an online family. The presence of many great (Shift.MS for example) groups where people can get sane advice are tempered by it also becoming a great venue for the purveyors of conspiracy theories and wacky ‘cures’. Without the abilities to discern that training and education – as we’ll see in the Part 3 – give, then a vulnerable, worried and credulous individual is extremely susceptible to this ‘fake-news’ agenda.
My personal opinion is that this is no longer a new issue, so it should no longer be used to excuse the initiation of a less-efficacious treatment. Just because Dr Google says it is safer (and the patient has chosen to believe Dr Google and a few people they may have spoken to who have no idea about things) and the neurologist says that would rather see them on something than nothing. I am not a medic but it sounds like a slight abrogation of responsibility to me.
In Part 3 I’ll look at patient reported issues with the devolution of responsibility for drug choice and some of the issues surrounding the education and understanding of medics as they relate to risk.
Dominic is 50, lives near Oxford and is married to Claire. He has a 16y old daughter, has lived in the UK since 1989 and was diagnosed with RRMS 26 years ago. He is now on his 4th DMT – Ocrelizumab – and has only just started to use a cane at times!
He has just finished a BA (Hons) History degree and an MSc – Politics with Research Methods.