White paper from Shift.ms outlines COVID’s ongoing impact on MS community

MS online community Shift.ms have published a white paper detailing the ongoing impact of COVID-19 on the MS community as reported by people living with MS themselves.

Sending out an online survey in September this year, Shift.ms received almost 1,500 responses and have used this to inform the white paper, as well as to develop a short awareness video, and to frame some questions to healthcare professionals about the future of MS services, which they have also published in video form.

The survey aimed to understand people with MS’, or ‘MSers” perceived risks and concerns regarding COVID-19, their greatest challenges faced in managing their MS on a daily basis, and what impact they have experienced on their clinical care as a result of the pandemic.

The paper outlines six area of insight, and six ‘key opportunities’ or areas for action based on the survey’s findings.

Insights into experiences of people with MS:

1. Concerns about contracting SARS-CoV-2
2. Impact on daily life
3. Clinical care satisfaction
4. DMT treatment
5. Remote medical appointments
6. Post-pandemic use of telemedicine

A summary of the core findings across these insights is outlined in Table 1, taken from the white paper:

The opportunities identified to improve support for people with MS are summarised as:

1. Help MSers obtain clear information
2. Provide Msers with support regarding MS-specific challenges
3. Improve access to MS care
4. Provide clear directives for MSers on how MS DMT treatment is being adapted throughout the pandemic,
   • including the reasons behind the adaptations,
   • across DMT delays, changes, and monitoring.
5. Prioritise appropriate appointment types for telemedicine
6. Considerations for the use of telemedicine in the post-pandemic setting for MS

To find out more and to download the white paper, visit shift.ms’s website via MS and COVID-19 (shift.ms)