Many readers of these Newsletters are highlighting that they haven’t seen their neurologist or a neurologist, for some time now. Many of you state only having had very brief telephone conversations with your healthcare professional (HCP) during the pandemic. Many of you are feeling neglected and adrift.
These are just a few of the reasons why I started the MS-Selfie Newsletters; to help you self-manage your MS as best you can, to provide information so that you can ask the right questions when you see your HCP, which in turn will help you make decisions about your healthcare and MS management.
Talking about ‘Your MS’ I have been involved in the development, validation and introduction of two projects, albethey commercially sponsored, to help people with MS (pwMS) prepare for their annual or scheduled follow-up consultations. Both of these projects have been co-designed, by people with MS (pwMS) and HCPs. So they should at least theoretically be sensitive to your needs.
Both MS in the 21st Century’s ‘My MS Priorities’ and ‘Your MS Questionnaire’ are online tools that first prompt you to think about your MS over the last 6-12 months, document your problems and then print out a report to take along with you to your appointment to aid the flow of the consultation. I am presenting the methodology behind the ‘Your MS Questionnaire’ at this year’s ECTRIMS online meeting.
You may find these tools helpful.
The philosophy behind these tools is to make sure the limited time you have with your HCP is fruitful and you come away from the appointment feeling satisfied.
Underpinning your consultation are several objectives:
(1) To make sure your MS is under control, i.e. are you NEIDA (no evident inflammatory disease activity).
(2) That all the pharmacovigilance or safety checks in relation to your DMTs have been done.
(3) To address any symptomatic problems (hidden and not so hidden) you may have.
(4) To remind you of lifestyle and wellness issues (Brain Health).
(5) To signpost you to service for preventive medicine, for example, falls prevention and bone health.
(6) If there is time to screen and advise on comorbidities
(7) To answer any questions you may have about MS and its management and other health issues that may interfere with your MS management, e.g. contraception, pregnancy, menopause, supplements, etc.
(8) To offer you the option of participating in potential MS research.
(9) Another function that is often missed due to time constraints is to measure the impact MS has on you by doing the EDSS and other outcome measures. An annual EDSS is required by NHS England for its Blueteq database to allow us to continue prescribing your DMT.
Anybody with any sense of time will realise that all of this is impossible in the allotted time of 15 minutes, which is all we have for the follow-up consultation. This is why remote monitoring and asynchronous assessments are needed.
One positive thing that has come out of the COVID-19 pandemic is the rapid adoption of digital and asynchronous platforms to manage chronic conditions and the use of social media platforms such as this to engage with people with MS. The one disadvantage is that access to these tools is not universal and hence until it is mandatory there will be a widening divide between the digital haves and digital have-nots. For example, we don’t yet have permission to email all of our patients with MS.
Please let me know what has been your experience with your MS Services over the last 18 months and what can be done to bridge this digital divide? Please be aware the digital divide issue does not only apply to healthcare but exists in the education and social service sectors as well.
Conflicts of Interest
General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust. The advice is intended as general advice and should not be interpreted as being personal clinical advice. If you have problems please tell your own healthcare professional who will be able to help you.
Interesting that one of my patients has completed the Your MS Questionaire already and sent me a PDF. What I want is for all my patients to do this not the few who read these Newsletters.
Great tool. I will use it at my next Neurology consult. My MS looks invisible to everyone so this is a great way to make sure I don’t look “too good.” Much appreciated, thank you
Perhaps also ask:
How many hours do you sleep at night and how often do you wake up at night?
Your MS Questionnaire is an excellent idea.
1-It would be nice to include an OPEN question.
2-About the question:
Being intimate or having sex
* Not at allA littleModeratelyA lotI can't do this because of my MS
Shouldn't you first ask if someone is sexually active or give an answer "not sexually active at the moment".
I have recently had Covid 19 despite being double vaccinated and am now having an m.s flare up. My neurologist has done telephone appointments and as I wasnt improving, has started me on 500mg a day of prednisolone for 5 days to see if it helps.
Love the idea. It's a shame that forms can't be downloaded without divulging any personal info (even if Novartis say they don't use, collect info and that this would only be for use between HCP and patient)
Thank you! Very helpful.
Thanks Prof G . Very interesting !
This is a really useful tool. I've just completed it and it's reminded me of something I wanted to discuss at my next appointment with my Neuro which had completely slipped my mind. To be fair I usually go with a list but this is much more structured. I'm also going to add in sleep issues before I email it.