Concerns and priorities of the MS community during times of crises

  • In 2020, Australians experienced a devastating bushfire season and shortly afterwards, the COVID-19 pandemic commenced.
  • Two researchers supported by MS Australia explored the experiences of people with MS during the bushfire and COVID-19 pandemic crises.
  • By conducting surveys, interviews and hosting a workshop, the researchers identified the concerns of the MS community related to these crises and together proposed management strategies to prepare for future and ongoing crises.

2020 was an incredibly hard year for many Australians. The 2019/2020 summer saw one of the most devastating bushfire seasons on record. Shortly afterward, the COVID-19 pandemic began, having a huge effect on the wellbeing of people, as well as healthcare systems worldwide.

Higher levels of social contact are associated with lower psychological and physical impact from MS. Recent research has shown that people with MS negatively changed their health behaviours, including physical activity and diet, due to the Australian bushfires and the pandemic.

Royal Commission reports have been significantly important to highlight needs of people with disability, however they have not focused on a specific disease group. It is important that people with MS actively participate in emergency preparation programs and are included in community disaster risk management.

What did the researchers investigate?

Published in Disability and Rehabilitation, a team of researchers, including MS Australia-funded researchers, Dr Yvonne Learmonth and Dr Claudia Marck, aimed to understand the needs of people with MS during times of crises; in this case, the black summer bushfires and the early stages of the COVID-19 pandemic. This study was consumer-directed, including a survey, interviews and a workshop involving people with MS, carers, healthcare professionals and disability advocates. In total, 176 people completed the online survey, 29 people participated in the interviews and 13 people participated in the workshop.

What was the MS community’s experience with the bushfires?

The survey revealed that almost all people with MS who were affected by the bushfires had at least one concern. These included leaving home, exposure to smoke, mood change, symptom change, and health in general, with the impact of smoke causing the highest concern. People with MS also found bushfire financial assistance, isolation from their community and reduced access to healthcare to be concerning. In addition, the wider MS community indicated that maintaining power in the home where people with MS lived and feeling helpless to assist their clients at the time of the bushfires were concerns.

People with MS indicated in the interviews that, during the bushfires, they experienced increased levels of anxiety, and despite MS organisations supporting people with MS through phone calls, many felt that more support was needed.

Few people with MS had a bushfire preparation plan, and if they did, it worked for one type of natural disaster but had little relevance to another, or it was not current (e.g. disease progression or changes in living circumstances). Healthcare providers reported difficulties in helping people with MS prepare an emergency bushfire plan. They highlighted the importance of considering the person’s disability when preparing for future crises and the complex considerations associated with people with MS.

What was the MS community’s experience during the early stages of the COVID-19 pandemic?

The survey revealed the main concerns of people with MS were COVID-19 severity in MS and the effects of MS medication on susceptibility to COVID-19. Other concerns included loss of social interaction with family and friends, loss of home support and carers, and reductions in access to health and wellness care. In addition, the wider MS community was concerned about the reliability of information.

In the interviews, about half of the people with MS experienced increased anxiety and confusion as a result of loss of family interaction, changes in access to amenities (e.g. groceries), worries about not understanding the restrictions from the government or their employer. People with MS were also concerned that illnesses (COVID or otherwise) could worsen their MS and how their anxiety was influenced by how many external stresses they may already be exposed to. However, there were also participants who found that due to the restrictions, they could monitor and manage their symptoms better, such as fatigue.

People with MS mentioned that they experienced high levels of social anxiety and a fear of returning to work once restrictions were eased. Researchers heard that employers supported participants to allow them to isolate and feel safe in their work environment. However, overall, the transition to different workplace practices was difficult for people with MS and resulted in them unwillingly disclosing personal health information.

What is required to support optimal health in people with MS during crises?

The views of participants who attended the stakeholder workshop echoed those who completed the survey and interviews. This group decided on priorities and solutions in terms of preparing for and managing MS care during bushfires and through the COVID-19 pandemic. Bushfire-related priorities included:

  • Accurate, timely, consistent information, from MS organisations and major stakeholders
  • Central phone or chat service for people with MS
  • Central online information source
  • More MS Nurses in rural areas
  • One-to-one education on creating a bushfire plan specific for people with disability
  • National registry of people with MS to expedite communication
  • Communication from MS organisations to restate the importance of maintaining appointments/management

Pandemic-related priorities included:

  • Localised information
  • Central phone or chat services for people with MS
  • Better access to MS Nurses through increased telehealth staffing numbers
  • Instructions on how people with MS and clinicians can use telehealth better
  • Focus on home-based exercise and consider carer involvement
  • Accessing information – coordination of multiple information sources, easy to understand with multiple dissemination formats

What does this all mean?

The researchers recommend that MS healthcare professionals are acknowledged as expert communicators of health information, including during times of crisis. They also recommend that high priority is placed on meeting the needs of people with MS to support them to maintain their health and, where relevant, employment at times of crises.

It is important that consumers are included in the design of services for people with disability at times of crises and researchers and policy makers should include them in every step of future health policy and research change.


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Concerns and priorities of the MS community during times of crises