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Vaccination and reopening concerns amongst the MS community
Eight months on from the initiation of the COVID-19 vaccination roll-out, doctor-led information may lead to confusion and anxiety in the MS community. Twenty months from the beginning of the pandemic, isolation and separation are causing mental health concerns in the MS community.
There are indications from Murdoch University and University of Melbourne researchers that information on the COVID-19 vaccine for persons with MS on disease-modifying therapies is not consistently communicated across healthcare providers associated with persons with MS. Preliminary findings from MS Australia funded project Crisis Resilience in MS, which included opinions from persons with MS, carers, healthcare providers, and MS advocates, suggest the above. The project indicates that concerns remain high in persons with MS concerning either receiving their vaccination or in anticipation of booster vaccinations. Lack of clarity between general practitioners and between individual neurologists concerning COVID-19 vaccinations is furthering overall concern and increasing patient-response related workload for MS healthcare providers. Further, concerns remain high for employees with MS returning to work in facilities where co-workers may not be vaccinated. Research is ongoing to clarify and confirm these findings
Vaccination information inconsistency Persons with MS and healthcare providers have reported confusion amongst general practitioners and neurologists in the past month concerning the timing of COVID-19 vaccinations and some disease-modifying therapies. Reports indicate that general practitioners may be compelling patients with MS to wait to receive their COVID-19 immunisation, countering the advice provided by national MS neurology groups. Further, reports indicate that a variation in neurologists’ recommendations within similar geographical locations leads to increased anxiety and increased patient inquiry to MS healthcare staff. Reports from the different Australian States indicate differences in where MS healthcare teams access the information on COVID-19 vaccination (concerning disease-modifying therapies).
Further reports concerning healthcare workers with MS, or employees working in roles where vaccination is mandatory, indicated that they might not be able to remain employed if mistiming of COVID-19 immunisation and MS treatment meant they were not vaccinated. These concerns stemmed from having not yet received the COVID-19 vaccination due to the above information inconsistency.
Concerns around the loss of social contact, reopening, and community transmission Reports of poorer mental health resulting from isolation or restricted access to family are problematic for persons with MS and carers. Persons with MS employed in healthcare and MS healthcare providers were concerned about growing COVID-19 case numbers or potential future growing case numbers. Anxiety amongst MS healthcare workers appeared higher in states currently with lower case numbers. Persons with MS employed in industries with increased social interaction (e.g. offices) were highly concerned about returning to work with other community members who had not received the COVID-19 vaccination.
Key Insights Information confusion from healthcare workers to persons with MS concerning the COVID-19 vaccination is causing increased anxiety for the MS community and increased patient-response related workload for MS nurses. In healthcare workers, two main concerns are; the need to be vaccinated (when MS treatment regimes may have prevented this) to remain in their job and increased overall workload and resource demand within the healthcare team impacting secondary and tertiary MS care.
The Solution
Providing clarity and guidance to medical staff (i.e. General practitioners and neurologists) on COVID-19 vaccinations concerning disease-modifying therapies. Raising awareness across the general community on the need to increase vaccination to relieve anxieties in persons with MS returning to the community. We recommend:
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Engaging the community of expert MS healthcare providers to collectively educate general practitioners on the guidance related to vaccinations and MS disease-modifying therapies.
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Engaging with behavioural and public health researchers to translate findings into effective intervention strategies to support the MS community’s safe re-engagement into society.
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Aunified source of information related to COVID-19 and MS. For example, MS Australia’s COVID 19 and MS online information hub.
As the COVID-19 pandemic continues to impact Australians disproportionately, systems are needed to educate the healthcare provider community on vaccinations for MS persons. Ongoing systems are needed to provide mental health support for those impacted by the COVID-19 restrictions. For more information on the study methods and details information this briefing note, please contact Yvonne Learmonth (yvonne.learmonth@murdoch.edu.au).
Lead Investigators
Dr Yvonne Learmonth, Murdoch University, WA. Dr Claudia March, University of Melbourne, Vic.
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Natural Disaster Preparedness in the Multiple Sclerosis (MS) Community
Eighteen months on from the Black Summer 2019/2020 bushfires, there are some indications that the MS community is still highly vulnerable to environmental crises.
There are indications from Murdoch University, University of Melbourne and University of Tasmania researchers that a lack of post-Black Summer bushfire analysis across MS healthcare, likely compounded by the COVID-19 pandemic, has left the MS healthcare community underprepared for ongoing environmental disasters.
Preliminary findings from MS Australia funded project Crisis Resilience in MS, which included opinions from persons with MS, carers, healthcare providers, and MS advocates, suggest the above. The project indicates that concerns remain high on healthcare community preparedness for environmental disasters. Lack of readiness is of concern, as in recent weeks, environmental events, including earthquakes and tornadoes, have occurred within Australia, and we are currently progressing towards the 2021 bushfire season. Further research is ongoing to clarify and confirm these findings
Ongoing Mental Health Concerns from the Black Summer Bushfires. Persons with MS, carers and healthcare providers (reflecting on their patients with MS) have reported in the past month of remaining traumatised from the Eastern Australia bushfires in 2019/20. All groups, including MS advocates, note that the short duration and cumulative effect of the bushfires being shortly followed by the COVID-19 pandemic may have impacted anxiety and depression levels in persons with MS and their carers. Further, reports indicate that a lack of mental health support services, specifically for persons with high disability needs, has not yet been resolved.
No Further Preparation Plans. MS health care workers and MS advocates reported that they are not aware of any (post Black Summer) updated plans within their organisations or institutions to address emergency and crisis preparations related to environmental emergencies such as bushfires, floods, earthquakes or tornadoes.
Persons with MS and carers report minimal plans for emergencies. They would like emergency planning for persons with disabilities to be 1. considered as part of their local communities overall preparations for emergencies, and 2. considered as part of their ongoing MS Healthcare. Persons with MS and carers report needing access to clothes, water, food, medications, electricity, cooling equipment, hoists, quiet areas, accessible toilets when evacuated in emergencies
Key Insights The black summer bushfire events were of high relevance for the Australian healthcare system. A recent increase in climate-related events (e.g., bushfires, floods, earthquakes and tornadoes) are occurring, and this is alongside the ongoing COVID-19 pandemic. Healthcare providers and MS advocates in our study are not aware of preparations for future environmental crisis. Further, persons with MS and their carers do not feel prepared for the future environmental crisis.
The Solution Raising awareness across the MS community on the impact of environmental factors, including environmental crises on the health of persons with MS, and the impact on the healthcare system.
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Engaging the community of MS healthcare providers and MS advocacy bodies to encourage planning and preparation for the impact of environmental crises within MS care
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Engaging with clinical scientists, behavioural scientists and sustainability scientists to translate the health and behavioural research findings into effective sustainable processes to address ongoing environmental crises
As ongoing and future environmental crisis are an imminent threat to the Australian healthcare system, these early indications have been shared with government for urgent consideration. For more information on the study methods and details informing this brief note please contact Dr Yvonne Learmonth on: y.learmonth@murdoch.edu.au.
Lead Investigators
Dr Yvonne Learmonth, Murdoch University, WA. Dr Claudia March, University of Melbourne, Vic.
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