Welcome to the first Bart MS Advisory Group blog post!
To introduce ourselves, we are a small team of MSers given the challenge of working with Barts MS Team to look at new and existing issues from the patients point of view, making sure that your voice is always understood and heard. To date we have been given challenges by the Team although looking ahead our aim is also to get feedback from yourselves on issues that we can take up on your behalf.
At our most recent meeting, our fourth, there were 4 of us out of a possible 5 which is about average attendance. We are a mix of MSers, between us we have both RRMS and PPMS with all the problems and challenges that go with these conditions, and while we are good colleagues now, we only met each other at the first meeting just over 12 months ago.
Like yourselves, we have ongoing commitments, either family or employment or both but we try to make time to attend the quarterly meetings. As you may expect we have quite strong opinions on a number of subjects and we are more than happy to add our two pennies worth, however we do of course allow each other time to make their points!
We have worked with Alison (our gallant chairperson...!) on a number of subjects, including for example redesigning the format of the annual Barts MS Research Day which hopefully many of you attend. Last year our suggestion to have a more relaxed format whereby the doctors and clinicians sat with attendees answering their questions on a more personal basis, was implemented and feedback received was that this approach was popular. Looking ahead, one of our current projects is reviewing how those with MS can better prepare for either their annual check up or importantly provide support for those newly diagnosed with this condition. This is an ongoing project and we are looking for our suggestions and recommendations to be finalised soon and put into practice in 2016.
You can find out more about some of the projects that we’ve been involved with in and what the scope of our work is in our information tab.
All of what we do is ensuring your voice is heard - please have a look at what we are doing and let us know if there are any other issues or challenges we can help with
The Barts MS Advisory Group.