Post written by a member of the Barts MS Advisory Group:
The Barts MS Advisory Group met for our quarterly meeting last week and amongst other things gave us regulars the opportunity to welcome a new member to the team. We’re delighted to say that she immediately played a full and active part in the proceedings.
The main focus of the meeting was assisting the MS clinicians and medical staff in designing a workshop aimed at reducing the number of falls which we all take care to avoid, but sadly suffer from. Image below of our initial clinic design.
This is exactly the sort of thing that the Advisory Group is designed for - working with the Barts MS team ensuring that our voices as PwMS are heard and the workshop is designed around us. It was a lively session with all of us adding our voices as to how the workshop should be structured and ensuring its content was not only relevant but could be used at home where many trips and falls occur. We have agreed the main points and are now looking forward to a run through in the next month or so before the workshop is made available to PwMS, via the MS nurses.
We also looked at information regarding the prescription of Cladribine, again to make sure the wording is in plain English and easily understandable to the end users - i.e ourselves.
Finally one of our group members reported back after attending a Epilepsy Focus day to see if we could pick up any tips to add to our own Barts MS Research Days. The feedback we received was that whilst the Epilepsy day was interesting, our formats are far more relaxed and encouraged more interaction from the floor, a plus point for all those involved in our MS Research Days over recent years!
More from us after our next meeting!