Friday, 2 January 2015

ClinicSpeak: controlling information

Do you think we should control the information that is provided to MSers? #ClinicSpeak #MSBlog #MSResearch

"The following table summarises the 5 most viewed SlideShare presentations from this blog; what is interesting is that the top 4 slideshows pull no punches and provide graphic information about how bad MS can be. Do you think this is the correct approach or do you think we should hold back negative information about MS?"

Name of most popular SlideShare Shows
No. views
1. Early aggressive Treatment in MS
1,041,412
2. Barts MSer PML Risk Guide May 2014
888,600
3. Grey matter, matters infographic version 1
850,980
4. Giovannoni's holistic approach to ms ver 3.1
677,805
5. Vitamin D as a DMT for MS
508,457

" Interestingly, the three versions of our holistic approach to MS that have been posted on the blog have been viewed over 1.25 million times; one of our most popular series of posts. This infographic is based on the London underground map and it is meant to depict the disease course of MS as a journey starting at being at risk of the disease and moving through different stages until you finally get to the terminal phase. A large number of people and organisations have asked to use this map and are now using it for educational purposes; all we ask is  that the source of map is acknowledged. Please feel free to download it and use. The idea behind the map is that each stop on this journey is an information stop that you as a person with MS may need or want to know about. What we are gradually doing is writing ClinicSpeak posts around each topic and eventually we will convert this map into a giant self-help guide so that you can stop at any stop and simply click-through to get detailed information on the topic of interest. Please note that his map is not only about DMTs, but provides information on many different and varied topics all related to MS and its management. Do you think the ClinicSpeak self-help guide would be useful to you?"

"Please note this map is a work in progress (see all the previous and current versions below); so if there is a topic missing please let us know we will add it to next version."

"Interestingly one the major MS Societies asked if they could use our map, but wanted to adapt it and remove the terminal stop. They didn't want their members, particularly their new members, to be reminded of death and the fact that MS affects survival. They were particularly concerned about the assisted suicide stop. We said no to their request as we took the position that MSers need to know about their disease in its entirety; we feel this is particularly important with regard to decision making that involves assessing the risks and benefits of the treatment. Surely the risks and benefits of any treatment needs to be weighed against the risks of the disease? If you don't know the risks associated with MS, how can you make an informed decision?"

15 comments:

  1. I think you have answered your own question - there is not point in trying to hold back information from MSers - besides, isn't that view lacking in morality? It is a bit like trying to close the flood gates, now that the internet, and your good selves, have made information available. For which I am very grateful. Happy New Year to you and the team :-)

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  2. Thank you Team G for standing up for full access to the truth about MS in its entirety. MS leaves no aspect of life untouched, from dignity and finances to intimacy and ambulation, everything gets marred by the indelible fingerprints of the disease. Drinking the artificially sweetened Kool-aid served by certain groups only creates a culture of misguided believers.

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  3. Isn't it a bot late to control the information? Since the proliferation of internet outlets, it seems the best approach is to provide the context to understand the deluge of information. Without reputable outlets like this, we are left solely with anecdotal information. Given a choice between research and anecdotal information, I prefer to base my decisions on results from (hopefully repeatable) research.

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  4. One of the worst aspects of having ms and not understanding it, either pre or post diagnosis is confusion. What is happening. Is something wrong? What is wrong? It is a horrible experience. Your work here helps so much with that. There is no way any doctor has time to address all the things that might go wrong. It is great to have a reference available when needed.

    And yes, it is important to know how bad things can get, for planning and risk management. It may be kind to withhold information but it is not fair or just. It is our life and we deserve honesty and respect.

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    Replies
    1. How do you plan for the worst?

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    2. You plan as best you can. It depends what you are able to do. There is financial planning. There is possibly changing to an easier work setting. There is planning for how to cope with future lowered mobility. There is the whole advanced directive issue. There is talking with reliable friends or family about emergency help if needed. There is preparing yourself mentally by thinking through different possibilities and what could be done to make life easier... There is more but it is not easy to describe and it will be different for everyone.

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  5. Your tube map is a bit like hard core porn. The first time you view it, it is shocking. A few times of viewing it you become bored. We already knew how bad MS is - most of us have sat in a neuros waiting room or have an aunt who is 30 years into the disease and running out of time. You mention the terminal phase, but in other posts claim MS is not a terminal disease. Can we really prepare ourselves for the hell that is late stage / end stage MS? I would rather you focus on finding out the cause/s of this disease. And then identify ways of stopping this runaway tube train. We are now in 2015 - time for someone to stop the train and let the passengers off. Are you that tube drive Prof G?

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  6. Thank you Team G for standing up for full access to the truth about MS in its entirety. MS leaves no aspect of life untouched, from dignity and finances to intimacy and ambulation, everything gets marred by the indelible fingerprints of the disease. Drinking the artificially sweetened Kool-aid served by certain groups only creates a culture of misguided believers rather than true empowerment, in turn, affording them to opportunity to make informed and wise decisions about the ongoing management of their own disease.

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  7. I'd be totally furious if information about me / that affected me was withheld from me. Unless the rationale in doing so falls under the Data Protection Act re significant risk of harm there no good reason to do so. Any information withheld on this basis would need to be clearly justified and documented with the person making that decision being fully accountable. Withholding information is paternalistic at best, offensive and damaging at it's worst.

    The response from the MS Societies does not surprise me. When I attended a newly diagnosed event we were told MS does not kill you and does no affect your life expectancy. When I challenged this I was told they didn't want to scare people.

    I can understand some people may not want to know everything or may need time to take things in at their own pace but no one should be misled however good the intentions. If people ask / want information it should be given fully and accurately.

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  8. I do believe it's a bit late to control the information. It's good to know how bad MS can get, but at times I think it's more important for the Mser to know that and have that personal conversation with their neuro or doctor. It's unfortunate that people can really misinterpret information and thus shy away or are too scared from being with that person with MS. It can get bad but at the same time, a lot of people keep taking into consideration stories of 20 years, 15, 10 years ago, where now as my neuro told me, you cant take even compare to not even 5 years ago cause of the drastic improvements and understanding.
    Im assuming this graph was developed based on Msers who are on highly effective dmts?

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  9. From a personal perspective, I want to know as much as possible in order for me to make informed decisions about my ongoing progression and treatment. I don't wish to be at the mercy of the Neuro - they are only human and not demi Gods. I have looked into special diets, DMTs and all manner of lifestyle choices including talking with my children about my wishes regarding any care I might need as I get older.
    This blog pulls no punches but I understand why you do this and am thankful. The MS world appears to have been in a state of apathy for too long and I appreciate how you are advocating change. Often the only way to do this is with stark facts.
    I can usually tell by the post header whether it will upset me or not so I some times shelve that post till I feel stronger but I always read it. I have also taken short breaks from this blog because it sometimes overwhelms me and then dip into it at later dates.
    I can understand how some may wish to sugarcoat the information. The MS society and others deal with the newly diagnosed and knowing the absolute worst from the off is a bit grim. It could also impact the way anyone with MS lives their lives whilst still relatively well and could cultivate a 'what's the bloody point' ? attitude.
    I appreciate what you doing and the changes you are trying to make. I've said before, this blog is not for the faint hearted but I hope you continue in the same vein and thank you.

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  10. I think it's important to not hold back on this information. But it is also vitally important that the information is not just raw and is given in context - perhaps with the ever changing outcome stats.

    Newly diagnosed or first time readers require genuine hope of doing well - particularly with new drug discoveries. That is not to say 'don't take it seriously', but a good context is important I feel. Usually, I have to use my gained understanding through hours of reading to draw on this, it's not always next to the bad and scary stuff to put things in the correct context (that is difficult with the blog format though!)...

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  11. No, I think MSers need to know ALL of the facts. I'm not sure in this era of candour that you could get away with withholding info anyway. How can you make an informed decision if you're not aware of the consequences of each choice (one of which includes the likely outcome if you decide to do nothing). I like this blog as it is. It fills a niche that no other site does. If you want the softly softly approach then the MS society and others can provide this. If you want high quality scientific opinion then this is the place to be. Keep up the great work!

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  12. I've long felt that my country's major MS society uses 22-year-old marketing majors to write all of the copy. It reads like everything is very carefully vetted and approved, and in the end nobody is saying anything meaningful. In that world, I'm doing just great. In fact, we're all doing just great. We go on a lot of picnics and cheer for the 22-year-old marketing majors when they and their friends pass at the MS Run or Bike Ride or Mud Sling, or whatever. It's one big party. Pass the potato salad.

    In your world, I have come to believe I'm in far more danger than anybody lets on and need to preserve what I'm lucky to still have (which, admittedly is still quite a lot). My job now is to pull my neuro over to your way of thinking whilst the MS Society is whispering in his other ear that how I'm doing is good enough.

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  13. Well, quite a lively conversation happens here! I've had MS 14 years, live in Texas & stumbled across this site today via a random twitter RT. I communicate heavily and personally on twitter when my energy is good. I ADORE my twitter family of MSers! I spent quite a bit of time this afternoon reading this blog, various topics and comments. Needless to say, I do have some experience (per se'), some thoughts, and it'll be interesting to learn & chat GLOBALLY about things in detail. The USA and UK handle MS, Societies, meds, & healthcare as a whole, quite differently & I'd like to contribute and learn more about things! BUT - I'm exhausted from reading so much and plan to rest up - will contribute tomorrow. Cheers all! ~ Mary

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