Barts MS Advisory Group meeting review

On Friday 23rd June, the Barts MS Advisory Group met off site for the first time, to review a location which may be used for a forthcoming Barts MS research project which aims to develop a new upper limb measure for people with MS. The location was a very disabled friendly coffee shop in the Olympic Park, now known of course as the Queen Elizabeth Park, and got a thumbs up from all of us.

Apart from reviewing information highlighting the dangers of Listeria for those RRMS’ers using Alemtuzumab, our main focus was on the proposed research project and what will happen in the workshops.

As some of you may recall, we reviewed the standard dexterity tests for hands at the last Advisory Group meeting and our thoughts were that many of the tests were somewhat out of date – e.g, how easy is it for you thread a needle or shell walnuts. This time the various tests were literally in front of us and we had to undertake them. This proved to be challenging, and also called into question some of the descriptions which will need to be redefined. For example we all agreed that in fact it was not only impossible to shell walnuts (a nut cracker is in fact required) they were very difficult to obtain and shelling pistachio nuts was more relevant! Building on this, we started to put ideas forward for the proposed workshop and hopefully these will be incorporated. One main proposal was to assist those with declining hand functions, tips on how to perform the tasks where they were becoming too difficult. 


This would enable the workshop not only to measure hand functions but also to provide practical assistance.

Once again our thanks go to Alison in organising the day and also her patience in dealing with this group of very lively MSers!