Resilience and commitment: insights into the multiple sclerosis (MS) community

At Roche, our commitment is simple: nothing for patients without patients. This core belief is the basis for the development of therapies that meet the real needs of patients and make healthcare systems more accessible

Back to life: Thomas’s journey with MS

Thomas is the perfect embodiment of this spirit of partnership. His world changed dramatically when flu-like symptoms led to severe vision loss, resulting in an MS diagnosis in April 2018. A severe flare-up later saw him become dependent on a wheelchair.

But Thomas did not give up. “I’m not a stay-athome kind of person,” he says. He returned to work and set up an MS contact group in Wolfenbüttel, Lower Saxony, Germany. The support of two key people gave him the courage to take this step – his neurologist, who showed him the way to selfhelp, and his physiotherapist at the rehabilitation clinic. The turning point came when he decided he was determined to go back to work and get out of the wheelchair.

Thomas’s involvement in self-help work is also based on his experience: “What really surprised me in the first few weeks, both in the hospital and at the rehabilitation clinic, was that no printed material was available.” Recognising an urgent need to provide people with easy access to information, Thomas now supplies hospitals and doctors’ offices with important materials from organisations such as ‘trotz ms’ (‘despite ms’).1

Making voices heard: the ‘trotz ms’ campaign

Thomas’s perspective is crucial for initiatives like the German ‘trotz ms’ campaign. He underlines two key aspects: the free patient service ‘trotz ms MEIN SERVICE’2 , which he describes as ‘first class’, and the digital resources: “You won’t find anything like the information provided by Roche, in terms of both scope and depth,” says Thomas, referring to the MS app Brisa, social media and the website. Under the motto ‘ich bleibe ich’ (‘I will remain myself’), the campaign offers a lively community of 56,000 followers on social media and resources such as regular events and practical tips on MS. Thanks to the host of services available, Thomas now has the knowledge and confidence to make informed decisions together with his doctor.

The success is reflected in the numbers – Roche’s patient partnership services in Germany have helped to ensure that over 70% of MS patients are actively involved in decisions concerning their treatment.

Looking forward to a simpler, networked approach

Thomas would like everyone involved – patient organisations, treatment teams and the pharmaceutical industry – to keep on breaking down barriers. He calls for simpler networking and feedback processes, and criticises the complex forms for reporting side effects: “It would be fantastic if there were an app we could use for that.” He calls on healthcare professionals to proactively inform patients about new treatment options and their eligibility. Continuous and transparent partnership is the only way to really ease the burden for patients.