Learning from Parkinson’s Disease

Have you heard about Participatory Medicine? 

At the ABN last week we have a masterful presentation from Prof. Bas Bloem, a neurologist from the Nijmegen in the Netherlands. He is really pushing the bubble in terms of service development in the Parkinson’s Disease (PD) space. He is a big proponent of so-called ‘Participatory Medicine’. The latter is something we at Barts-MS are trying to do with our MS Service. If you have the time could you please watch the TEDx talk below and let us know your thoughts. We are interested in hearing about your experiences, good or bad, about participating in your own healthcare.

Our self-monitoring initiative and patient-activation programmes could be view as Participatory Medicine. Are you already your own neurologist? 


9 thoughts on “Learning from Parkinson’s Disease”

  1. I studied for many years to become an ’MSologist’. As a patient without a medical background it was hard but fascinating. This blog helped me a lot. Because of this I could participate in the choices that had to be made concerning my MS medication. I am now participating in the clinical trial of ofatumumab.

  2. The point that really came over to me is that the patient is the customer. The NHS sometimes loses sight of that. The patient is moved around, prodded, poked and examined but the purpose and result of the visit is frequently not explained until a letter arrives after the clinical visit. That has been my experience at hospitals outside London.The video highlighted the importance of the patient/customer and how they can make informed decisions. The education needs to start with the doctors/consultants, they must give an opportunity for the patient/customer or me to be involved with the treatment process.Bit of a no-brainer in the 21st century

    1. Best post I've seen on the blog in a long time, definitely think this is the way forward.Especially the part about the patient choosing when to revisit – as a PPMSer, I feel like my neurology appointments are usually a waste of the doctor's time and mine – it's just a box ticking exercise utilising resources that could be better directed elsewhere, but would appreciate being able to get an appointment if I had concerns, instead of having to wait until the next scheduled appointment.Jo being positive for a change!

  3. I am not sure everyone is ready to become their own neurologist, but this blog is a great place to start. You may want to change its name to the MS University.

  4. My neurologist has effectively hinted he doesn't care for my 'expert' patient opinion.

  5. Yes, yes, yes! From my point of view as an MS patient, and others that I know, this is what we want! Especially for those of us who are 'past it' (secondary progressive). There is no magic drug for us as yet and we have to live with our worsening symptoms. To have a Neurologist as a partner-in-pain would be amazing – someone to listen, give options and information, let us choose……… Wow. Of course, down here in Devon we are at least 10 years behind the big cities. So we need you to promote and campaign. Thank you so much!

  6. I have been seeing a connection between my psoriasis and MS for quite some time. If I have new psoriasis, I have new ms spots on the mri. I think, open your mind and follow together the journey. But my neuro is not intrested.

  7. Thanks again GG. The postage morning from slow makes it well worth starting so early in Australia – your posts are becoming the beginning of each of my days.I (EDSS 8.5, 9 HPT 120 420) have a background ICT and therefore very much in favour of ICT taking its correct place in the collaboration between neurologists and patient. The point I want to make about ICT at the is that we are getting to the stage where the computer can, pretty well indefinitely, programmed to completely fit around the needs of the human being.As the example I would cite a blog that I maintain where I have bent over somewhat backwards with my coding skills to make the interface of the blog as viewed by my completely computer phobic friend to be completely usable by him. Perhaps it is worth noting that I use the same blogging platform that you do

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