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