Turning up the volume on MS

Earlier this month MS Society Scotland launched its manifesto for the upcoming Scottish Parliament elections.

Everyone living with Multiple Sclerosis (MS), their family and friends has a unique MS story. As we campaign it is vital we listen to the stories of people affected by the condition and ask what is most important to them.

And earlier this year we launched our new strategy ‘Every MS Story (this link will take you away from our website)’ which focuses on three long term goals that matter to our community:

• Helping people to live well with MS
• Connecting people and making sure their voices are heard
• Working to find effective treatments and prevent MS

Our manifesto (this link will take you away from our website) for this coming parliament takes these core issues and asks candidates to ensure that they don’t miss the opportunity to build on the advances in research and support services put in place since 2016.

At a time when there are more treatments than ever before and people are coming together to help each other, we want our elected representatives to reflect those positives and create services that make sense for the 15,000 people living with MS in Scotland, not continue on a path that challenges them in spite of the progress made.

The past four years have seen advances in new treatments for MS being approved for use on the NHS, including the first ever treatment for primary progressive MS in Scotland.

However, despite these developments our 2019 My MS, My Needs survey (this link will take you away from our website) told us that people still face many challenges in accessing the care, support and treatments that they need to effectively manage their condition. There is still a prescription post-code lottery – however unpopular this term is with policy-makers – and we know this needs to change.

The devolution of social security to the Scottish Parliament has also been a key feature of our work since the last election. We’re heartened by the progress made in influencing the Scottish Government’s approach but there is still much to be done.

To reach a long term vision of social security which truly supports independent living for people with fluctuating neurological conditions like MS we need a system that treats claimants as real people. An end to dehumanising assessments is the beginning but an end to the Personal Independence Payments (PIP) 20 metre rule must follow. This arbitrary benchmark for the highest level of support has stopped people from working, caused them to become isolated and has no basis in evidence.

More than ever, the importance of wellbeing and building resilient communities should be clear to see. Through the work of our local MS groups, volunteers and fundraisers, together we have adapted our services during the pandemic to meet the needs of our community. The next Scottish Government should commit to continue tackling digital exclusion, particularly with the increasing shift to digital by default in NHS services utilising the Attend Anywhere platform.

It seems like only yesterday that we gathered outside the Holyrood to launch our 2016 manifesto. Back then we were pleased to receive cross-party support from MSPs elected who pledged to ‘get loud for MS’.

Much has changed since then but many of the issues our community faced then remain.

So this election we are turning up the volume once more and asking for everyone to get even ‘Louder for MS’ to ensure the voices of everyone affected by MS in Scotland are heard in Parliament.

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