MS-UK deliver MS sessions for the DWP
Diana Crowe, Head of Services and Ryan Jones from MS-UK’s helpline team worked with volunteer John Mills to deliver two multiple sclerosis (MS) awareness sessions to Department for Work and Pensions (DWP) staff. The hour-long online sessions were for DWP staff involved in supporting people with a disability to find employment. The sessions were well attended with over 350 participants joining. Here, Helpline and Information Officer, Ryan, shares more information about the sessions.
We gave a whistle stop summary of MS including demographics and prevalence, a headline overview of the pathology of MS and the common (and less common) symptoms. John then spoke openly and honestly about the myths and preconceptions people may have about MS. He shared his own thoughts at the time of his diagnosis, how he navigates judgement and shedding light on some of the common and perhaps misguided things that people say such as ‘you look ok, you must be better’, can’t a good night’s sleep help fatigue?’ and the almost ubiquitous ‘will you end up in a wheelchair?’. His insights are valued by MS-UK and were very much appreciated by the DWP staff.
Prior to the workshops and whilst in discussions with the DWP, it had been suggested to Diana that as well as covering the basics of ‘what is MS?’, the workshop should also try to cover ‘how to make interviews more comfortable – ‘what does the person with MS need?’. This is such a thought-provoking and broad topic that our team could probably have talked for hours about the individuality of MS.
We decided to highlight some of the barriers that people living with hidden symptoms will face. We particularly wanted to show some of the issues someone with fatigue may have whilst sourcing sustainable employment. We used the analogy of trying to preserve mobile phone battery life, to help people understand how carefully someone may have to manage fatigue and available energy. We also talked about reasonable adjustments in the workplace and shared examples of roles and how they can be met by people with MS once an adjustment has been made.
We then handed over to John who shared his experiences of MS and work. John spoke about his diagnosis, his emotional journey to making and accepting adjustments in his personal and work life. John talked about support from his employer and their occupational health team who suggested that he reduce his working hours to ensure sustainability.
As part of his presentation to the DWP staff, John said, “Going part-time was one of the hardest decisions I had to make as I felt it would compromise my career progression. I was a senior member of the team in a growing industry, exactly where I wanted to be. I was only able to reach this decision after with the support of friends, family, colleagues and MS-UK. I had support from MS-UK, which helped me come to the conclusion that I can have both a career and manage my condition.”
We finished up with enough time for a bit of input from the DWP staff, who asked some insightful questions and gave lovely feedback to John and the team. DWP colleagues said that the session had been ‘educational and inspiring’ with another saying, ‘thanks so much for explaining MS so clearly – have learned so much!’. Many thanked John directly with a member of staff saying ‘So glad I joined this session. Thank you for being so frank and open. Really enlightening. Many thanks’.
MS-UK is happy to consider further collaborative opportunities to improve the understanding of MS, particularly with professionals who may be supporting members of the MS community.