Yvonne talks about having MS and volunteering

28 May 2024

Volunteer - Yvonne

Initially diagnosed with MS in 2013, Yvonne talks about volunteering to support the MS Trust

For a few hours a week it's great to feel my knowledge can help direct people to good quality information

I was diagnosed with PPMS in 2013. I was initially able to carry on working as a senior manager within the NHS at a large teaching hospital.  The insidious and initially dramatic onset of my MS symptoms however prompted me to rethink my work-life balance, and I was supported by my managers to retire through a phased 5 year retirement plan. 

After retirement I was very aware my extensive knowledge of health and social care systems, combined with my own experiences could still be of use. I was appointed by NICE as a patient committee member in the redevelopment of the MS management guidelines, and subsequently for the creation of guidelines for the rehabilitation of people with chronic neurological conditions, including MS. 

My first role as a volunteer with the MS Trust was as an expert patient witness involved the decision to make Ocrevus available to people in England with PPMS. 

In doing this work I felt very aware of the need to keep grounded with the experiences of other people with MS, not just my own.  Joining the MS Trust Facebook group was a way of keeping in touch, but I was saddened by other's struggles and was aware of the wealth of quality information produced by the MS Trust that could be of help. 

So when the opportunity for Facebook Signposting Volunteers came up, I jumped at the chance. After a probation period, (which included a reining in of my natural desire to try to fix or overcome others problems!) I now review posts every Saturday and, where I can, respond with links to potentially helpful information on the MS Trust website. 

Judging from the responses the posts are well received. For a few hours a week it's great to feel my knowledge can help direct people to good quality information. 

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