Last October, our Living with Multiple Sclerosis: The Carer’s Perspective report, painted a vivid picture of the lifelong effects of caring for a loved one with Multiple Sclerosis (MS).
The report, the outcome of a year-long collaboration with The International Alliance of Carer Organizations (IACO) and Eurocarers and based on a global survey of more than 1000 MS carers, shed light on the toll that caring can take and highlighted the need for increased support.
The findings were stark: 43 per cent of respondents reported that caring had an impact on their emotional and mental health while 29 per cent said that caring had an impact on their physical health.
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Around a third said caring had an effect on their financial situation with a similar number having to take time off work. Unsurprisingly, 84 per cent of carers reported that their role had an impact on their work and career.
Just a few weeks after the report was released, Eurocarers launched its proposal for an EU Strategy for carers across Europe, entitled ‘Enabling carers to care’.
This strategy focuses on creating carer-friendly societies across Europe, targeting policymakers and stakeholders to consolidate existing approaches in favour of carers’ rights.
The ultimate vision is to deliver a policy environment that supports and empowers those caring for a loved one.
“The goal should be to ensure carers are equipped to manage their caring role while juggling their other life responsibilities”
Both initiatives have an unequivocal message: carers, regardless of the health condition, perform a vital role and need to be adequately supported in doing so.
This support should come in a variety of forms and include clearer and more targeted information, flexible working practices and accessible respite care.
The goal should be to ensure carers are equipped to manage their caring role while juggling their other life responsibilities, whether that’s looking after other family members, managing work or studies or taking much needed time out for self-care.
A key finding from our survey was just how strong the desire for knowledge was from the MS carers’ community - from the point of diagnosis and throughout their caring journey.
Crucially, the information given to carers to begin with can have a considerable impact on the level and quality of support carers receive or later request.
“Understanding the importance that information and support can make to the lives of carers has sparked ideas for new initiatives”
This thirst for information is echoed by Eurocarers who have called for one-stop shops for carers, providing access to information about care, caring and available support.
However, despite the benefits associated with peer support, just 15 per cent of survey participants said they had connected with other carers or patient organisations as a way to help cope with the challenges of caring. Our hope is that this figure will rise in future surveys.
Understanding the importance that information and support can make to the lives of carers has sparked ideas for new initiatives.
Building on our Embracing Carers initiative - dedicated to better understanding and supporting the emotional, financial and health implications of being an unpaid carer - and the MS Inside Out initiative - which aims to better understand MS from different perspectives - 2019 will see us continue to bring our commitment to MS and carers to life in a meaningful way.
Join the conversation: #MSInsideOut