Barts-MS rose-tinted-odometer: ★
When I described in a post that I was having flashbacks, related to possible post-traumatic stress disorder (PTSD) from my accident, it struck a chord with pwMS who bravely described their own flashbacks about the way their diagnosis of MS was handled. In response to this, we teamed up with shift.ms to do an online survey of its members. We advertised the survey via the blog and many of you participated. The results of this survey were so worrying that we submitted an abstract to the Association of British Neurologists (ABN) meeting. This abstract was accepted and here is the poster for you to read.
This work made me realise that this is a serious problem and we really need to do something about it, i.e. to ensure that the next generation of neurologists learn how to tell their patients that they have MS in a way that is supportive and gives hope. We really don’t want another generation of pwMS suffering from PTSD. With my renewed focus on MS prevention, I really don’t have time to run with this programme of work myself and I am hoping some young and highly motivated person picks up the baton and makes it happen. We need a national training programme for aspiring MSologists and other HCPs on how to give the diagnosis of MS in a way that doesn’t result in PTSD. In parallel, we need national support programmes for pwMS to deal with the emotional rollercoaster ride that inevitably comes after being told you have MS.
Don’t you think it is shocking that in 21st-century pwMS are left traumatised with flashbacks because of the way their MS was diagnosed? Are you not disappointed that most MS services don’t have support structures in place, similar to those in cancer services, to counsel and support their patients when they are diagnosed with MS?
Let’s make a difference so that the next generation of pwMS don’t suffer from PTSD.
General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of the Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust.