Shelley Elgin, Country Director for Wales at the MS Society, tells us about the impact of multiple sclerosis on those who live with it, and the vital work of the MS Society in Wales.
WORLD MS DAY
World MS Day takes place every year on 30 May and is an important day of global solidarity, collective action and hope for people across the globe living with multiple sclerosis (MS).
Shelley Elgin explains: ‘As Director of MS Cymru, I feel privileged to lead the MS Society Cymru team and together we proudly support World MS Day, which helps raise awareness of a condition that many don’t know enough about.’
WHAT IS MS?
In Wales, there are estimated to be over 6,100 people living with MS but many more are affected by MS. Multiple sclerosis is a condition that affects the brain and spinal cord. In MS, the coating that protects your nerves (myelin) is damaged. This causes a range of symptoms like blurred vision and problems with how we move think and feel. Because symptoms are different for everybody and often appear invisible, opportunities to raise awareness of MS – like on World MS Day – are really important.
MS is relentless, painful and disabling, and it can affect every aspect of someone’s life. MS is the most common neurological condition among young adults. While most people are diagnosed in their 20s or 30s, it can affect people of all ages, and of all races and genders. Once diagnosed, MS stays with you for life, but treatments and specialists can help those living with MS manage the condition and its symptoms.
MS SOCIETY
There are estimated to be over 150,000 people in the UK living with MS, with around 135 people diagnosed each week. MS Society is the UK’s leading charity for people affected by MS. For 70 years we have been at the forefront of support, research, and campaigning to improve the lives of people with MS. We are the largest charitable funder of MS research in the UK, transforming our understanding and treatment of the condition. Our vision at the MS Society is to create a world free from the effects of MS with our mission to transform lives and stop MS.
MS SOCIETY CYMRU
MS Society Cymru leads the way in Wales, with a team of passionate staff and volunteers offering services, support, fundraising activities and campaigns for the MS community right across Wales.
We work closely with MS teams in all 7 Welsh Health Board to support people living with and affected by MS, and we run joint days such as ‘Newly Diagnosed Days’ and ‘Living Well with MS’ days. Our MS Cymru team also offers community activities, working in partnership with other organisations, such as the Citizens Advice Bureau.
In Wales, we have 13 local community groups run by dedicated volunteers across all regions, bringing people together regularly to reduce isolation and offer support. We run fundraising events – like sponsored runs, walks, cycles and zip lines – and offer specialist exercise classes for people living with MS.
OUR WORK
Keeping active is really important for managing MS symptoms so we currently have a range of taster activity days such as indoor climbing, accessible surfing plus many more. We also have a range of online activities to help improve people’s isolation health and well-being.
We also recognise that unpaid carers need support, and all our activities support those affected by MS in Wales, together with specific projects we have that target unpaid carers and offer a ‘breathing space’.
Our campaigning work helps to improve the rights of people with MS and their carers. We work with the Wales Neurological Alliance, Carers Alliance and Age Alliance Wales to campaign for access to treatments and ensure people are getting the support they need to live well from statutory services, ensuring the Welsh government understands the long-term impact MS has on a person.
Co-production is also at the heart of our work people living with MS and those affected by MS are experts by experience who know first-hand the barriers and issues that must be tackled and improved. They have told us that: ‘Access to well-resourced health services and financial security are the foundations for people with MS to live full and independent lives.’
GET INVOLVED
We rely on our fantastic volunteers to support our activities for the MS community right across Wales, so if you would like to help, please get in touch. We have many opportunities for people to support us, whether that is volunteering or fundraising for us.
FUTHER INFORMATION
You can find out more about our work at MS Society Cymru, follow us on Facebook, X and Instagram.
For more general queries about the sector’s work in health and social care in Wales, please email healthandcare@wcva.cymru.