What should you expect to Save your Brain

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The great and the good have got together to try and come to come to a consensus of what you should expect with regard to

Time for referral and diagnosis. 
Time to treatment decisions 
How you should be monitored 
How quick should you report issues 
How quick should the response be.

Hobart J, Bowen A, Pepper G, Crofts H, Eberhard L, Berger T, Boyko A, Boz C, Butzkueven H, Celius EG, Drulovic J, Flores J, Horáková D, Lebrun-Frénay C, Marrie RA, Overell J, Piehl F, Rasmussen PV, Sá MJ, Sîrbu CA, Skromne E, Torkildsen Ø, van Pesch V, Vollmer T, Zakaria M, Ziemssen T, Giovannoni G. International consensus on quality standards for brain health-focused care in multiple sclerosis. Mult Scler. 2018 Nov 1:1352458518809326

BACKGROUND::

Time matters in multiple sclerosis (MS). Irreversible neural damage and cell loss occur from disease onset. The MS community has endorsed a management strategy of prompt diagnosis, timely intervention and regular proactive monitoring of treatment effectiveness and disease activity to improve outcomes in people with MS.

OBJECTIVES::

We sought to develop internationally applicable quality standards for timely, brain health-focused MS care.

METHODS::

A panel of MS specialist neurologists participated in an iterative, online, modified Delphi process to define ‘core’, ‘achievable’ and ‘aspirational’ time frames reflecting minimum, good and high care standards, respectively. A multidisciplinary Reviewing Group (MS nurses, people with MS, allied healthcare professionals) provided insights ensuring recommendations reflected perspectives from multiplestakeholders.

RESULTS::

Twenty-one MS neurologists from 19 countries reached consensus on most core (25/27), achievable (25/27) and aspirational (22/27) time frames at the end of five rounds. Agreed standards cover six aspects of the care pathway: symptom onset, referral and diagnosis, treatment decisions, lifestyle, disease monitoring and managing new symptoms.

CONCLUSION::

These quality standards for core, achievable and aspirational care provide MS teams with a three-level framework for service evaluation, benchmarking and improvement. They have the potential to produce a profound change in the care of people with MS.
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So this provides a bench mark of what you should expect.

So the first question I would pose to ProfG is why didn’t he post this as the lead author?:-)
Next up is How does BartsMS measure, as one needs to practice what you preach?

COI ProfG is author on this 

About the author

MouseDoctor

22 comments

Leave a Reply to Gina Blincoe Cancel reply

  • Great work in establishing a suitably rapid timescale for all stages of what is currently a minefield that takes much, much longer, with certain key stages/events missing. Bravo!

    Good luck in getting this accepted and implemented – a battle that is worth it as delays = increased consequences and deterioration, even if its not obvious at the time.

    A. Nonny Moose

  • My boyfriend has Primary Progressive Multiple Sclerosis, and is looking for something different besides the regular medicines for MS, to help him function. He is in a power care he has trouble with his arms and legs and his bladder. We saw your advertisement about this drug on the Facebook and is very interested in wanting to know how are we could try it for him. He was a diesel mechanic and I had work all his life for himself until MS took that away from him. He would like to be able 2 get back into that or be able to do anything besides sitting in the bedroom playing on the computer. If you all could do anything you help please let us know we would be greatly appreciative.

    • I have PPMS and I am just about to leave for Moscow tomorrow to receive HSCT treatment . Stem cell treatment is the only viable option for people like us. And the success rate is far better than anything else on offer.

    • Please join UK HSCT for MS and Autoimmune Diseases,and Mexico AND Russia,you get every support there,don’t waste your time with the MS society there only there to push their pills and are backed by the big pharmas.every thing else is just ridiculous they have not got a clue,they don’t live with this monster day in day out,start fundraising xxx

    • I’m glad I’m not the only one who is crying with laughter! This has to be one of the greatest works of fiction ever published! 😂

  • Good grief! What world do you all live in?

    I have hundreds of MS Forum members who have not seen a neurologist for 10yrs. Not had an MRI for 15yrs. If they are lucky they may see an MS Nurse once a year. They have been given no medication. Naturally never told about HSCT. It is like Neurologists live in some parallel universe to the one we patients inhabit? If cancer patients were treated like we are treated, there would be an outrage.

  • And who do you make accountable for the fact that the neurologist was too confident to ask a second opinion and diagnoses you with TIA instead of MS? Lost 4 years of treatment and got stuffed with blood thinning and cholesterol medication. INCOMPETENT!!!

  • Do you mind me asking where you live because I’m definitely moving there. My god I’ve never laughed as much in my life 😂 or maybe you haven’t been in a hospital environment since birth 😂 😂 😂

    • This is pretty much exactly the process I have been on since my diagnosis in 2011. Annual MRIs, annual review of DMTs, and supportive rehabilitation therapy. I live in Sydney, Australia and have always been impressed with the care I have received—now, hearing the reactions to the chart, I’m super-impressed.

      • I was in Syndey abou a fortnight ago and was listening to a talk on brain health and the standards they are aspiring to, so you are in a good place. The neuros and particularly the nurses I met were lovely.

        • I live in NZ. Was diagnosed early this year, in Jan. I have had five infusions of immunosuppressents. I have an appt to meet my neurologist for the third time in August. I think we receive pretty much gold standard treatment here, in NZ. I am impressed after reading of others stories. I have pretty much 24/7 access to the neuro nurses and I can email them anytime, and get an answer generally within 24 hours. This has made my treatment and diagnosis so much easier with all the support I have received. I am doing this thru the public system, and I have no complaints.

  • I’m in the US and my PCP admitted me to the ER to get my private insurance to get going on MRI and neuro referral. Expensive but is worked. Otherwise my experience has been true to this flowchart. Is there a flowchart on how a neuro would decide what is a “suitable DMT” for a patient?

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