My recent post on PTSD (post-traumatic stress disorder) and the resulting comments were an eye-opener to me and many of our readers. If you haven’t read the post and the comments I would urge you to do so as it provides context for the following survey we are doing in partnership with a social platform for people with MS.

We understand that this survey may be upsetting or distressing to some members of the community so you are welcome to skip any questions that you do not want to answer.

The purpose of the survey is to see how common PTSD is in pwMS and then in collaboration with to develop an awareness and training programme for MS Healthcare Professionals to (1) prevent pwMS developing PTSD when they are diagnosed as having MS, (2) to screen for the condition in routine MS practice and (3) to develop the skills to treat PTSD so as to mitigate its impact of PTSD on the lives of pwMS.

As you can see this blog has become more than a soapbox and occasionally we try to address important issues to improve the lives of people, and their families, living with MS.

CoI: multiple

15 thoughts on “PTSD-2”

  1. A Great blog for Multiple Sclerosis information 👍🏼
    Keep thinking there must be a better way to utilize patient-doctor interaction, communication.
    My remote visit with my Primary Care Doctor went well. I prepared 2 days before, jotting notes about current weight, vital signs, subjective self assessment. I have plenty of time to do this. I felt like we had a productive virtual office visit. Much better than “How are you feeling?” Me: “Fine”.
    The PTSD survey and depression screen could be part of assessment. It’s easier for me to type in answers than it is to verbalize mental health concerns.

  2. I completed the survey, but it was very badly formulated. In the beginning you are asked whether you have experienced PTSD in relation to MS, with a yes/no response. All subsequent questions assumed that you did experience PTSD. I completed the questionnaire because I wanted to be counted, made it clear that I had not experienced PTSD, but had experienced trauma during the diagnosis phase. Shift.MS could have written the survey to ensure that people like me with no PTSD are counted, but are not asked to answer any more questions after responding to the initial query about PTSD. I think that the results are going to be skewed.

    1. Agree with Liz, I did the same thing. Still I think the trauma of being diagnosed is an important issue to be addressed because it gets in the way of people treating properly in the beginning, which is the most important time to treat head on. This is part of the reason I feel so frustrated with the current approach of “here you have MS choose a treatment”. No one is in the right head space after hearing that news to make a good decision. It should be more like the cancer model “here you have MS, we strongly recommend aggressive treatment, please trust us and here are resources to help as we know this is a lot to process, we are here for you”

      1. Spot on with the head space reference!
        I’m astounded the neuro and MS nurses aren’t aware that that visit is like a lamb going to the slaughter for us….and then being told look at these booklets ( oh sorry there aren’t any left just look at the MS decisions page) and choose which one you want.
        How the heck would we know which one to pick at the best of times, never mind after being told minutes before that yes we do have MS?

  3. Prof G, I remember sometime ago, you mentioned about creating a leaflet or similar about ‘what GP’s need to know about MS’.

    This would be a very good idea still. For GP’s recognising MS symptoms, referrals to neurology etc. Thanks.

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