Getting your head around MS can be hard enough when you’re an adult. But for young people it can be devastating, so good quality information is vital.
Therefore we’ve been working with young people to understand the gaps in the information available to them and the kind of information they want. We began back in 2017 running a series of focus groups with young people that have MS and talking to health professionals specialising in paediatric MS. We followed this up with surveys for young people affected by MS to get a broader picture of the kind of information they wanted.
We’ve also commissioned some research to find out how young people find, navigate and use online information. This research will help to inform how our work with young people develops in the future. What we heard from the young people we spoke to was clear. There is an unmet need for information specifically produced for them in a way that they can engage with. This was particularly highlighted in the results of our young people and MS survey with 75% of survey respondents telling us that the information they found was either confusing or distressing. Furthermore over 30% of them weren’t finding the information they needed at all.
Our research also found that for the majority of young people YouTube videos are the first sources of information they look to. To that end we put out a call to young people affected by MS asking for their help – and so created a series of videos to launch our new YouTube channel. The stars of MSTV are the MS Trust reporters, a group of young people affected by MS. The videos enable them to discuss the issues and topics that matter to them, and to seek expert opinions on those topics.
MSTV will be an ongoing project for the MS Trust, and we’ll therefore keep talking to young people affected by MS to develop more content. And with the help of our young reporters we aim to release at least one new video every month. MSTV will allow young people to pick and choose the topics and playlists that interest them and tailor their own information, finding what's right for them, when it's right for them.
Like all our resources, MSTV is only possible thanks to the support of people living with MS and the health professionals that work with them. You’ve filled in surveys, taken part in focus groups and interviews, responded to blogs, and reviewed the work in progress. You even helped us come up with a name for the whole thing, MSTV!
It’s also thanks to you, your families and friends who have raised the funds that have made the whole thing possible.
Most importantly of all are the group of young people affected by MS that have volunteered their time and hard work to inform, shape, produce and star in our videos. Without them MSTV could not have become a reality. We’re incredibly grateful for the help and support of all our MS Trust reporters and we’ll continue to need their input, as well as yours.
To keep MSTV running and to raise awareness of MSTV with the young people who need it most please visit the channel and click SUBSCRIBE.
MS resources for young people
Links and downloadable resources, including booklets, graphics and films to help children and teenagers understand MS.
Gilenya licence extended for children and teenagers
The European Commission has approved the extension of the licence for Gilenya (fingolimod) to include treatment of children and adolescents 10 years or older with relapsing remitting MS.
Focus on childhood MS
MS Trust went to Great Ormond Street Hospital to meet a paediatric MS specialist nurse, Katie, and two of the young people she works with
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