What do you want the next generation of neurologist to know about MS? #ClinicSpeak #NeuroSpeak #MSBlog
Every 2-years we get the opportunity to update the Pan-London Neurology trainees about MS. We have a one whole day allocated to MS. The teaching is typically a series of lectures and/or case presentations that are meant to highlight important aspect of MS management. I have been chairing these sessions for the last 6 years. I am not sure didactic lectures are the best way to train medical professionals; the turnout is typically very poor and by the end of the day you have only a handful of diehards remaining . I think t he best training is hands-on experience in the clinic and on the wards, which is why I remain a big fan of bedside teaching.
If you are a pwMS what do you think young trainee neurologists should know about? What would you like us to teach them? If you are a neurology trainee and are reading this please let us know what you want to know? Do you find these training days informative? If you could how would you change them?
Every 2-years we get the opportunity to update the Pan-London Neurology trainees about MS. We have a one whole day allocated to MS. The teaching is typically a series of lectures and/or case presentations that are meant to highlight important aspect of MS management. I have been chairing these sessions for the last 6 years. I am not sure didactic lectures are the best way to train medical professionals; the turnout is typically very poor and by the end of the day you have only a handful of diehards remaining . I think t he best training is hands-on experience in the clinic and on the wards, which is why I remain a big fan of bedside teaching.
If you are a pwMS what do you think young trainee neurologists should know about? What would you like us to teach them? If you are a neurology trainee and are reading this please let us know what you want to know? Do you find these training days informative? If you could how would you change them?
I have embedded t he provisional programme below. Please note that we have decided to change the format this year and base the day on a series of tutorials (not didactic lectures) around clinical case scenarios. For the first time we are providing a series of mandatory prereading so that we don’t have to use the day to deliver facts. As I write this post I realise that we will need to weave something into the day about re-humanising medicine; i.e. how to get compassion and empathy back into the routine care of pwMS.
Prof G the programme looks excellent. Is there any chance of patients attending the tutorials? I am particularly interested in Dr Turner's tutorial on HSCT. If not will you share the discussion online? Thanks.
Unfortunately, not. The venue is relatively small and behind a security barrier. I will ask the Deanery, but this is a traditional teaching programme I would be surprised if they would allow pwMS to attend.
On the other hand, having some PwMS in attendance, would be an opportunity for them to help the presenters humanize their patients.
16.45-17.15 is the star performer
It sounds like a very comprehensive programme. It is very concerning that turnout is typically very poor. Trainee Neurologists need to understand the uncertainty and variability of MS experienced by patients. I agree that having pwMS attending (or videos of consultations) would be a good idea.
Good idea about videoing it.
Agree, this is excellent. Concrete cases speak much more than theory. Will you share the presentations with us ? This can be extremely useful even if there are some UK specifics such as drug availability, or access restrictions.
Regarding the 23 year old med student, reminds me of my brother, this was 17 ish years ago. He had wanted methotrexate but his MS dr would not prescribe, he is edss 8 ish. My advice to this patient would be roll the dice on the carry over risk and do the alemtuzumab. Btw I couldn't find the off label link when I wanted to spell Methotrexate, has it been taken down or am I missing it.
Some of the old links have been removed to make it faster for the webpages to load
Concur with the endorsement of the individual cases being used for the program.May I request the inclusion of one element to all deliberations Prof G – the 'rehumanising of MSology'Having listened to the Robin Youngson TED TALK it does seem to me as if the lack of patient participation in so many conferences and training does reflect his points on 'experts' and 'them and us' Perhaps patients would be able to usefully contribute with providing written accounts of some of their experiences and perspectives? Having provided lots of training in previous years I feel confident of endorsing the inclusion of the other experts, even if their experiences are negative or trauma – as when involving adults who were victims of child abuse. Their contributions were heard in a profound way by the professionals who attended. I hope it is possible therefore to allow patient involvement and the compassion message in some format in order to further enhance the excellent program you have drawn up.
I think this looks like a very good programme and it would be so disappointing if registrars did not find this engaging and thought-provoking.Points to include maybe controversies about monitoring of PwMS ie. annual scanning as some may be coming from centres with quite nihilistic views on both monitoring and treatment. Compassion fatigue, as I think neurology is a hard job with so many unanswered questions and so many devastating illnesses and shattered lives to deal with. Even someone saying that they are sorry to hear about a new symptom and acknowledging the impact and significance it has had on the patient helps. That can be done in a kind and non-patronising way. Most things can't be put right but kindness helps. When they become a patient or a member of their family does, they will remember the kindness and of course you can still be a brilliant clinician and diagnostician and be kind, they are not mutually exclusive.If they are breaking bad news then ask them to respect the silences and to ask a patient if they are ready to go on, or if they want to hear more. When there is so much information to be given remember the information is for the patient, not the doctor.Learning to have confidence in dealing with uncertainty and being able to be honest with the patients about this and not be too doom-laden nor give glib false hope but never, ever, ever use the expression 'how long is a piece of string'.I do hope the day is successful and the registrars appreciate the amount of experience and expertise that is being made available to them. What a wonderful chance to think, question and learn.
Something additional that cannot be taught, but it's good to remind them is to show compassion. Not mercy, but compassion. I am not sure what they'd reply to the 64 SPMSer, but just replying to his email would be a good step…
Great to see your MS patient examples as professionals – like so many of us. The best neurologists see the whole patient – as a young, mid 20s, highly ambitious lawyer when diagnosed many of my questions related to my career. My neuro never 'sugar coated' anything, but also told me to just keep going and it has worked. Now my neuro takes an active interest in my career – always asking what my next career goal is. Makes a huge difference to me to know he realises how much that means to me. And he's proud of my achievements!
Excellent programme, especially as you are going to include the "rehumanising medicine" theme. Ironic that this is being held at the IoN in the NHNN Queen Square bubble. The whole lot of them (the bubble dwellers) should be attending your programme, they might learn a thing or two.
Looks really good. I can identify with the last one as I wanted / went through the same.I think the HSCT will be a nono. I can already hear the words non compliant patient :-)If I was the patient in the Alison talk I'd be sad questions about HSCT were considered "low priority", particularly given his numerous symptoms. Differing practitioner / patient values and treatment goals are another big issue.
Since 2004 I was an avid reader of everything-related-to-MS. As a patient I believed been informed was one of the best ways to make me as healthy I could be. But too much information can also backfire because then my life became all about MS. I decided to be an MS advocate and raise awareness in Portugal. I did it for around 11 years but decided to have a stop and live other things. One resolution was to reduce the number of MS related newsletters in my inbox. I used rollup.me and got shocked of more than 20 newsletters were about MS. The only one I will keep following is… Bart's MS Blog.Suggestion for the programme, that is already so rich:- to make a live session with a MS simulator of symptoms. I have done it myself to other healthcare professionals, with other people with MS in schools and even the MS Portuguese Society did in the Parliament. All the sessions went really well and people remember the impact, the heaviness and tricky thing of having MS. One example is to put people wearing different kind of shoes, including a fine like a diver and give a glance of balance problem and drop foot, googles to mimic the vision problems, a heavy backpack to mimic heaviness in the body, two pairs of gloves on each hand and try to get the buttons of a shirt on and off. And it can go on with no limits except imagination.To be honest what I felt in this raising MS awareness in 11 years is if other people don't feel in the skin and get touched in the heart, it's very hard to pay attention to all the knowledge that is needed to manage MS. To feel must be part of the training in my humble opinion.- Denmark and Sweden published different results in the HSCT procedures, with better results by Sweden. Is it possible to share more between the healthcare teams what and why is it working better in some countries, to avoid expensive and risky healthy tourism.Thank you for reading so many words. My 2 cents here, hope they are useful. Thank you all at Bart's for a lifetime of hard and passioned work for people with MS and their families. Luisa Matias (Portuguese, living now in Denmark)
Patients are not cash cows. Before prescribing drugs, ask yourself if you would want your loved ones taking them.For all the tutoring you have received, remember that the patient has direct experience of the disease. We are feeling it and living it. Give our word some credit.Don't underestimate the importance of MS Nurses. If you find yourself seeing patients who do not have access to one do what you can to rectify that. They are our safety net when our welfare is not your priority.The symptoms can be isolating and an unapproachable neuro on top of that can be quite devastating. Don't be the straw that breaks the camels back.
As an aside to providing Prof G responses – I'd like to say Ioisa how impressed I am with what you've been doing and as someone 13months on from diagnosis I'm so glad that there are people such as you giving their time contributing in such a beneficial way!
Any chance you could do a blog post with what you believe are the 'best' answers to these questions?
The next generation of neurologist need to know that through books, lectures and experience they will only ever gain a framework for dealing with MS. Today my MS becomes an adult and 18years of experience places me at more of an expert level in my condition than any clinician.The approach needs to be collaborative with respect from both sides for the value of knowledge they each bring. I guess healthcare professionals need to inspire confidence that they know what they are talking about but I feel they should add a little humility as they will never truly know in 15 minutes what is best for the patient. Humility, honesty, compassion/empathy and integrity are key. Sometimes hearing "I don't know" and "what do you think/feel" is refreshing. There are no certainties in MS and every person is unique.I guess it is more difficult with newly diagnosed who need more guidance but in these cases neuros can support patients to gain confidence in becoming an expert. Patients need educating too, in how to listen to their body, keep records, where to get up to date information and how to process that information. If patients are supported in this then maybe the time spent in clinic could be more effective and efficient?
Tutorial Day tomorrow Prof G Any alterations or additions to the program? Please find time to provide feedback