How my Advanced MS Champion has made a difference


6 October 2020

The 'MS Trust...in us' campaign will help fund our second wave of Advanced MS Champions, ensuring people living with advanced MS don't miss out on vital support. We hear from Maria about the difference her Champion Tania (funded by the MS Trust and appointed in June this year) has made to her life. And from Tania about why our Advanced MS Champion programme is so important. 

Maria's story

Maria is 46 years old and was diagnosed with MS in 2002. After studying business at university, she became a marketing manager and, in her spare time, enjoyed travel and water sports. She has a positive zest for life and before the Covid-19 lockdown tried helicopter rides, skydiving and gliding, as well as enjoying regular theatre trips. 

Maria's MS has progressed rapidly, leaving her with no movement in her body, and poor speech and swallowing. She lives alone in a fully adapted house with 22 hours of care a day. 

Maria's problems are complex and require a great deal of regular input from health and social care professionals. In the past, however, that care has often been fragmented and delivered by non-specialist staff who have no experience with MS. 

But Tania has changed that. "Having an MS champion in my life has helped and assisted me tremendously. I can discuss any issue with Tania. She forwards it to the relevant person and my issue is dealt with efficiently and effectively. Having an Advanced MS Champion supporting me floods me with confidence to live my life - not just survive. Not all super heroes wear capes!" 

Tania's story

The aim of the Advanced MS Champion is to improve people's quality of life, enabling them to live well with their MS and to reduce any unnecessary hospital admissions. 

I'm really excited about this role as I feel that people with advanced MS will benefit from better coordinated services to manage their complex needs. This is a wonderful opportunity to be in a proactive role to improve service delivery and resolve some of the barriers to people with advanced MS accessing the services we know they need. This role will collaborate and enhance the amazing work already carried out by other health professionals but we'll be able to provide specialist MS support, input and intervention. 

In these uncertain times, Advanced MS Champions are more important than ever. We can support people with advanced MS who have struggled with the restrictions of lockdown and may have experienced reduced access to health professionals to manage their symptoms and the early interventions we know are vital. Thank you to the MS Trust for funding and supporting Advanced MS Champions like me across the UK.