What is your worldview of MS?
Back in 1982 when I was in 1st-year medical school I had the good fortune of being taught by Professor David Hammond-Tooke, an eccentric social anthropologist, whose task was to make us view the world from different cultural perspectives. I was living in apartheid South Africa and Wits, a liberal English speaking University, wanted its medical graduates prepared for work in a multiethnic world.
Professor Hammond-Tooke was a ‘Worldview Expert’, who had studied the role of traditional healers in Africa. He made it clear in his first lecture that the shaman, witchdoctor, sangoma or traditional healer was a very important part of African culture and African people’s lives, and that we should have nothing but respect for them and the role they play in sickness and in health.
We were taught that the traditional healer had evolved to address the psychological and physical needs of the individual, the community and society at large. Although Hammond-Tooke implied that the methods of the traditional healer were ‘non-scientific’ it was obvious when we met them and were exposed to their practices, later on in our medical training, that they practised their art using tried and tested methods, passed down from generation to generation. To be honest it wasn’t until about 70 years ago with the emergence of the ‘scientific method’ and more recently ‘evidence-based medicine’ that ‘Western doctors’ were nothing more than traditional healers, practising anecdotal medicine that today would surely be labelled as being alternative. Blood letting is the first example that springs to mind. The worldview of my predecessors was not how I view medicine and neurology today. The biological knowledge as it applied to medical practice today was very rudimentary 70+ years ago.
The traditional healers role was to help the individual and it citizens make sense of the predicaments they found themselves in. These predicaments weren’t always disease or sickness, but often personal or family misfortune. One of the qualities of being human is to seek out explanations for the unknown. Have we changed because of modern medicine? Obviously, not! Individuals still seek out answers and explanations based on their own worldviews and modern doctors need to understand that there are alternative worldviews of MS, in comparison to their own, and these worldviews can be fluid and change over time. Failure to identify with alternative worldviews may have consequences at several levels for people with MS and society at large. Recent examples are the CCSVI epidemic, alternative natural or lifestyle therapies and the role and place of HSCT in the early treatment of MS.
Another change that has occurred with the development of the internet and the web has been a democratisation of knowledge. Gone are the days when the doctor knew it all and was the only person who could make decisions. Patients and other healthcare professionals have skilled-up and know a lot about MS; in some situations patients may even know more about MS than their neurologists. This is very challenging for some neurologists who have a more traditional Western medical worldview of neurology and its practice. In other words the neurologist is now not always best placed to make decisions about their patients. The new art of medicine is to know when you are needed to make decisions or when you are only needed as a guide to help your patients make their own decisions.
This is all well and good, but what happens when there is a clash of cultures or clash of worldviews. What do we do then? How do we reconcile widely differing worldviews of a similar problem? For example, one neurologist may think his/her patient has active MS, but an overall a good prognostic profile, and they may want to start them on a moderately effective platform therapy. In comparison, the patient who is an avid researcher and a voracious reader is adamant they want HSCT. What do you do? Do you say no, knowing that that patient will find a way to be treated with HSCT at great cost and personal sacrifice abroad? Or another neurologist may want to start a patient on a highly-effective treatment because the patient’s MS is highly active with early disability and evidence of end-organ damage. However, this patient does not agree with the neurologist’s assessment of things and wants to try an alternative lifestyle approach to manage their MS. This patient is also very knowledgeable, having read widely and sort outside opinions, and has come to the opposite conclusion of the first patient in that they think these DMTs are simply too dangerous and will interfere fundamentally with their immune systems that will have unpredictable consequences and will put them at risk of developing other iatrogenic problems (problems caused by the treatment). This second patient is more accepting of the potential outcome of their MS and is prepared to become disabled if that is what is destined to happen (yes, there are pwMS who are prepared to become disabled). What is more important to these people is how they live their life and how they treat their body.
How we reconcile these extreme and disparate worldviews is difficult. One way is a negotiated settlement with compromises. For example, I will put your case forward to the multidisciplinary HSCT team and see what they say. If they refuse to accept you onto the HSCT programme because you are not eligible we could challenge their eligibility criteria or ask them to make an exception. The other option is to try one of the other high-efficacy DMTs in the interim whilst we try and get the HSCT eligibility criteria changed. We will need to ask the MS Society and other important stakeholders to help. For the second scenario, one could try the complementary medicine approach rather than the alternative medical approach. Or you may negotiate to review the disease activity after a period of time to see if the alternative approach is working. Time, patience and a negotiated position can build trust. Showing you care and are non-judgemental helps. The other is to provide cases studies of other patients who have done well and others who have not done so well with alternative therapies. It is important not to turn the advice you are giving into ‘project fear’. Explaining that MS is an unpredictable disease and that it needs personalised treatments may help. The important point is not to stop caring and to treat the patient as if they are just another one of your patients on a specific MS treatment and ask the same questions. Be it a negotiated compromise or an unchanged treatment strategy you need to be there if the patient needs help in the future. I have seen too many pwMS, who decide to go the alternative treatment route, who are discharged without regular follow-up, who are then referred back years later very disabled. In comparison, I have had many patients who change their minds when they see how MS is affecting them and are prepared to complement their lifestyle management programmes with licensed therapies. Providing these patients with a safe and caring environment to allow them to change and adapt their worldview is what is important.
As I am writing this post I am re-learning the lessons taught to me by Professor Hammond-Tooke. To understand and be accomodating of different worldviews.
To get a handle on the many different worldviews that permeate the MS space would you be prepared to share yours? We need to know who you are and to get four statements, or adjectives, that sum-up your worldview of MS? I will then put these together in the form of an online slideshow to illustrate how diverse, or similar, we are. To participate you also need a descriptor to let us know where you are coming from.
I have put together a few examples, which will hopefully stimulate you to add to the collection. Please don’t be shy you may have many different perspectives and are welcome to add additional perspectives. As the slide show grows so will our understanding of each.
Thank you.
You are right on your comments.
I personally think if a patient has done its homework should be heard. Not because nhs says no things cannot be changed. I was denied when I could still walk fampridine, sativex, hstc…..
I only wanted to test if it would work. 2 years ago I went to Sheffield to be denied hstc. I still could walk with a rollator. Spms was hinted, my walking was too slow. I was then willing to give my life for it. My ms was spiralling down . Fully disable now .
We accept the consequences of a treatment or lack of treatment. Doctors should be crystal clear and well informed of ALL the possible treatments and outcomes.we patients have no time to waste
“Disseminated sclerosis, as I have informed
you, gentlemen, is not an exclusively spinal
affection. It invades the cerebrum, the pons
Varolii, the cerebellum, the bulbus rachidicus,
as well as the spinal cord.
Lectures on the diseases of the nervous system
(1877). Lecture VI Disseminated sclerosis.
Pathological anatomy.
From a very good “Shaman”
Not 70 years ago but 147 years ago
Obrigado
J M Charcot”
Charcot lived and practised in an era where the diagnosis was king. No effective treatments existed, but they did try a lot of things.
I’m newly diagnosed (3 months) and still have no real idea if having this is going to end up with me being disabled because all the MS nurse says is they don’t have a crystal ball. I was beyond petrified so chose Copaxone as it’s been around longest and some of the side effects of the newer ones sound atrocious.
If I was told I had leukemia and told that bone marrow transplant (which is effectively what HSTC is right?) would quite likely cure me, I’d do it in a heartbeat, I wouldn’t chose some drug that has been around 20 years and is less effective, but I’ve done that with MS.
Reading some of the stuff you say Prof G makes me shudder (brain shredding/brain reserve etc).
Would HSTC get rid of MS or not? Do people with MS (who are more than just names on a Doctor’s patient list) supposed to wait until they are effectively disabled before HSCT is even talked about?
” I wouldn’t chose some drug that has been around 20 years and is less effective, but I’ve done that with MS.”
So why did you do it?
because I was petrified reading about the side effects. I was told to look at MS choices website and pick which one I wanted. How the heck would I know what is good and what isn’t? I am symptom free and have had few mild symptoms, didn’t want to almost guarantee being ill from side effects…have I made the wrong choice? It’s all as clear as mud to be honest!
“because I was petrified reading about the side effects. I was told to look at MS choices website and pick which one I wanted”
In my country you are not alow to self medicate
You seem to be analagous to someone who refuses to invest in the stock market and instead lives on a pittance in retirement due to inflation eating away at your savings. Invest in the more efficacious treatment and avoid having MS eat away at your brain. Ocrevus has high efficacy with a good safety profile.
An analogy with money… Sorry, but that sounds really cold and lacking in compassion. Not your intention I’m sure.
Ali, I’m afraid you’re right. If you want hsct you have to fight for it. You have to learn to navigate the system and find a way to get it. You have more chance of winning the lottery than your neuro suggesting it. A sad indictment of how those of us with MS are treated (or not)
Why does fingolimod limit travel?
Suppresses the immune system, so can’t have live vaccines e.g. yellow fever, which might restrict travel. Also, some people might decide against travel to some countries, if they think risk of infection is too great.
Live vaccines can always be given before treatment starts if not having them might be a problem in the future.
You may not want to visit places with novel and exotic infections, in particular areas with neurotropic viruses, when you are immunocompromised. Dengue, Japanese B encephalitis, yellow fever, etc. come to mind.
Well here’s your starter for 10……
SPMS / HSCT 07/17
1 – Expert by experience / own best advocate making informed decisions
2 – Regret late diagnosis & HSCT not soon enough (bankrupted by cost)
3 – Accumlated disability & fatigue = life destroyed
4 – Loss of self, frustration, anger, isolation, boredom, lack of help from nhs
Not soon enough and bankrupted by cost are just two of the issues I am trying to address in this and other posts. Can I refer to them as ‘warts’ on the face we call MS?
Prof G
You say “in some situations patients may even know more about MS than their neurologists”. I would suggest that it is likely to be most, not some.
I was and continue to, be badly let down and I am so frustrated to see it happening to a further 100 people every week in the UK.
Give me a chance to have a real conversation about it and I can explain some really simple things that could make a massive difference to so many people.
Living with MS is awful. It has stripped me of all the things that made me who I was. I have only accessed information, HSCT and neuro physio because I am tenacious and extremely fortunate.
It’s not fair that I should have had to pay to survive with a little dignity remaining. I have saved the nhs a huge amount of money by travelling to Moscow for what was absolutely world class care. It’s not fair that I still have a debt of £20k to repay. It’s even less fair that I have had treatment and others who want it are denied it by either the nhs or financial constraints.
None of us have time to wait and see anything. We are existing now – the problem is we want to live !
As a person who transitioned to SPMS 5 years ago, sometimes I want to shake the young people and say take your DMT‘s while you can and while they are available and while they work. None of this “wait-and-see“ or homeopathic approach. Because those of us on this side of MS would try anything to stop progression.
Sometimes acquiring insights takes time.
In his book “thinking fast and slow” Daniel Kahneman details the numerous cognitive biases that patients must overcome in their decision making. To be frank, most people are not well equipped to evaluate options.
We are not rational by nature at all. We overemphasise rate events, we value losses more than gains, and we are particularly sensitive to bad outcomes that we have made an active choice in. There are many more, but these spring to mind as being particularly relevant when selecting treatments and weighing up side effect risks.
I highly recommend reading this book (or finding a cliff notes summary online) as it’s valuable to understand how we make decisions and the very predictable ways in which we are inclined to make irrational choices. Our brains tend to favour efficient decision making over rationality, but once we understand this we can correct for it.
nobody has a crystal ball and it all remains a matter of probability. You have to accept some risk in all things, and never get to find out what would have happened if you had made the other choice – c’’est la vie.
So does it happen all over the UK where you are told to go to the MS Choices website and make your choice what you want to take or is that not the norm?
I am 46 (diagnosed 3 months).
I’m just gonna come out and say it, the MS nurse = chocolate tea pot. If I hear I have got no idea how you are going to/will/won’t/might progress, we haven’t got a crystal ball I might scream!
Can someone who knows what they are talking about tell me if I should be on something stronger/more up-to-date for god’s sake!!
Is it realistic for an MS patient expect to find a neurologist who is available enough to “discuss options?” How is discussion possible in the context of 15 minute annual appointments with a neurologist who see’s thousands of patients on top of his own research and academic work? I feel highly informed about the benefits/risks of a variety of therapies, but dont feel like I have a platform for discussion and collaboration regarding my own treatment.
I want to make the best decisions possible for a good long term prognosis. The information is highly accessible. But it sure is disempowering having minimal opportunity to discuss it and move forward.
MS sure is a long, lonely road.
I’m sorry to say that we MSers are pretty much diagnosed and dumped. That’s why the various facebook forums are so active. We all try to support each other because the nhs doesn’t.
From my own survey
– 60% of us are given our diagnosis on our own with no family member or friend present.
– 75% of us leave that conversation with no further information in any format.