When in the police, many years ago, I went into some shocking situations. As a middle-class lad I often struggled to even understand how people could live like this. You’d never know it from external appearances with many people.
If you want to gain confidence you rapidly learn to communicate at an entirely different level and understand the huge differences in interpretation of information and social dynamics from their side. I was called the ‘Posh One’ by a family with whom I had repeated dealings and I was baffled by this, as I am half Canadian and at best sound like a poor Lloyd Grossman impersonator. So one day I asked the matriarch and she replied that it was because I say ‘’please and thank you’ and ‘spoke all posh like’. I had had no idea that it was things like that, that were their takeaways from dealing with me.
Barring medics who have done a fair amount of work in things like addiction clinics, been an FME (Cop Doc) or a GP in a less privileged area, no one clinical that I spoke to seems to have really actively considered some of those sorts of underlying factors.
Here are a few more that are food for thought regarding the imbalances that exist between neurologist and patient.
4 out of every 5 consultant neurologists are male; but 3 out of every 4 newly diagnosed patients are female.
The females are usually aged between 20-25y; consultants are 35y +.
There must be a gender/age/education/power dynamic of some type here.
(I am using the NRS figures for the UK with 6 social grades)
A consultant is in the A (Higher managerial, administrative or professional) category. This category makes up 4% of the UK population in 2015 and remains unchanged from 2006.
The average 20-25y old female in the UK is unlikely to be a fully qualified professional when they present. The latest 2015 split for the entire population (male and female) is:
B – Middle Class – Intermediate managerial or professional – 23%
C1 – Lower Middle Class – Supervisory, clerical, Jnr managerial, administrative – 28%
C2 – Skilled Working Class – Skilled manual workers – 20%
D – Working Class – Semi-skilled and unskilled manual workers – 15%
E – Non-Working – State pensioners, casual, lowest-grade workers, unemployed with state benefits only – 10%
Consultants are at a minimum educated beyond the usual level of a postgraduate. Easily within the top 0.5% of the population.
The average UK neurology consultant earns upwards of £80k, many topping £100k +
Average earnings for UK females in the 73% of C1, C2, D and E social categories, aged 20-25 are likely to be significantly lower.
I mention these factors because they are often overlooked by doctors or given lip-service to, with no real understanding. It is important to consider social interaction, construction of identity and self-worth (for all parties involved) and how they can cause issues at the points of intersection and departure as it relates to DMT choice, GMC and NICE guidelines.
Imagine for a moment possibly never having attended hospital and then your life is turned on its head with an MS diagnosis. You attend the MS clinic in the neurology department somewhere in a hospital and when called in you are likely to be faced with a significantly older (I presume white but I didn’t get those figures) male who is educated to a level far higher than you, obviously earns more money, probably speaks with a ‘nice’ accent sitting easily in a room with bins labelled for clinical and domestic waste, a mobile BP unit parked casually in the back, a medical table/couch, the mild whiff of hospital that you stopped smelling years ago, the bustle of uniformed nurses in and out. I am observing that a consultant neurologist’s idea of a normal, friendly, welcoming environment (as opposed to scrubs and an OR?) is not shared by the majority of people. They will have spent most of their working life in a variety of clinical environments. Many of their patients haven’t set foot in one until recently. Imagine for a moment the background level of cognitive dissonance that they are experiencing. There are the audible things and all the other unfamiliar sensory inputs too.
To cap all that, they pull a chair up close to the patient, smile winningly and tell them that it is important that they are an active participant in choosing a DMT. Sure, the stunned patient nods along, take the leaflets and gets Googling. All the time many are feeling as if the doctor expects them to have made a choice for their next visit in a few weeks time.
They won’t tell you how they feel but they do vent in forums. It is astonishing to read people’s experiences. Even if you disagree, it is how they feel, though a feeling they aren’t comfortable sharing with you.
It can go differently though; the most tragic story told to me by a patient was that the advice amounted to ‘being bunged three leaflets and told to refrain from using Google’. On the other hand, they may be referred to the MS Decisions website from the MS Trust. This is fine if the doctor has shaped a conversation around therapies available, their suggestion(s) and why. What isn’t so fine is to just direct them there, tell them to choose one of the several that you have indicated are suitable. It is as if the medic has mentally absolved themselves of taking a more active role. When the patient returns saying it is a toss-up between nothing and Beta-Interferon that shouldn’t be a surprise; without context they appear to be the two options least likely to complicate their lives.
Of course, it is their right to choose nothing, and a percentage surely will. A neurologist I spoke with reckons about 5% of patients cannot be convinced that drug treatment is anything other than a great big organised con by Big-Pharma. With them then the doctor is into the medico-legal arena of, Cover Your Ass mode to ensure that everything is documented properly and can’t come back on them. Nonetheless, the only absolution a Doctor should feel when that happens is knowing that, whilst involving the patient, they actively contributed to the decision making process.
As Colligan and Metzler et al say in their 2016 paper about shared decision making,
“The goal is not for the patient to pick one treatment choice instead of another; rather, the goal is to help patients be more comfortable with their decisions and allow them to actively participate in their care.”
If you think patients are paying attention to what a doctor says in the first 6 months of the diagnosis then watch this: https://bit.ly/M9rlws If you roll your eyes because you seen it or used it before then do it again you will be surprised further.
The brutal truth is that a lot of the patients a doctor sees are not going to have the social or intellectual confidence to ask insightful questions, challenge things said to them or ask for a second or even third opinion. When some patients are left feeling that is their responsibility to choose a DMT, many of them feel a sense of betrayal and anxiety, not involvement in a shared process.
(I promised total anonymity when I spoke to people so no names, no pack drill. But thank you again to all who helped me)
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.