Involving family and carers in co-production
Simone Bell cares for her husband, who has relapsing remitting MS. For Co-Production Week, she tells us why support for family and carers is so important and how they can help shape our services.
My name is Simone and I run an Instagram page with my husband called @marriageandms.
My husband was diagnosed with relapsing remitting MS in 2018. We started our page in 2022 with the aim of raising awareness of Black men living with MS. And sharing our experience of how MS affects not just the person diagnosed but the whole family.
I wanted to take part in the Leaders by Experience programme because I feel as though the family/carer’s voice is rarely heard. I always say “I don’t have MS but I live with MS”.
Learning that support is there for me too
As the wife of someone living with MS, I understand how much MS disrupts your life and affects you as a family – therefore, services and support should be available to us too. But I haven’t always felt this way.
Previously, when I looked at the MS Society website I didn’t feel as though it was “for me”. It seemed very much centred on the person who had been diagnosed. Now that I have more involvement with the MS Society, I realise there is support available to me and that I can use things like the MS Helpline. But how many other family members and friends feel the way I did?
Getting involved in co-production
Through being a part of the Leaders by Experience programme, I hope to raise awareness of how family members are also affected by MS and in turn, to improve diversity in co-production. Everyone affected by MS should feel supported and considered in the work the MS Society does.
I’m helping set up an online co-production community where family members and friends of people with MS can share our views and experiences to influence and shape MS Society services. This will help make sure people like us are considered and get the information and support we truly want and need.
Do you have MS or care for someone who does? Could you share your experience, knowledge and skills to help shape services for people like you? Our experts by experience newsletter lists all the opportunities to help shape our work.
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You can find Simone on Linkedin and follow the Instagram page she runs with her husband Nikoma @marriageandms.
