The Group met on 9 December with another jam packed agenda. Four of us were present together with Alison from Barts MS.
Alison advised that she has recently assumed responsibility to liaise with and provide assistance to other advisory groups (e.g. for Parkinson’s, stroke etc.) established in other departments of the University. I assume this means that our group is performing well which is a real vote of confidence in all of us. To kick this off, Alison provided us with the results of a questionnaire that she had produced aimed at identifying areas where assistance eg training, organising etc. is required. Following discussions a plan of action is now being drawn up.
We then moved on to discuss PROM for upper limb function, PROM being Patient Reported Outcome Measures. In the past there was probably limited or no focus on upper limb functionality for PWMS, the whole aim was purely preserving lower limb functionality. Now upper limb function is fast gaining traction by neurologists and indeed drug companies as an area to be focussed on to preserve as much as possible. As part of this we reviewed existing measures of hand movements (the ABILHAND) and we agreed that a more holistic approach to measuring such functionality is required rather than present list of questions such as “how easily can you thread a needle” or “how easy do you find shelling walnuts”, such activities are probably somewhat archaic to many of us! Rather than guessing results we want to make sure the questions are relevant. In addition we also want to build in some form of personalised scoring so what is important to some individuals (eg those that thread needles!) may be scored appropriately. This is the start of the project and hopefully the group will provide assistance and input for an important area of research and development for all of us.
Standardised 9 hole peg tests and a timed 25 foot walk may be very familiar to those of you who have attended drug trials but for others they will be new. We looked at these tests from a practical point of view and discussed with clinicians how easily these could be undertaken at home and the results recorded on line in a personalised profile (Clinic Speak). This is part of a drive by Barts MS for PWMS to undertake more self-recording (including the Expanded Disability Status Scale (EDSS)) and being able to discuss the results with your neurologist at your regular meeting.
Image above testing the 9HPT and later the new 25 Foot Timed walk.
We finished up with the excellent news that 3 Group Clinics for PWMS have received funding, these are the Bladder Clinic, Lifestyle Clinic and the Falls Clinic, the latter of which the group played a key part in designing. We discussed the possibility of a new clinic to add to these, which we all had very strong views on, so rather than go into that now, I think we will leave it and let you know progress or otherwise at a later date.
That concluded a very fulfilling day and it just leaves me to say have a very happy Christmas and best wishes, and of course best health for 2017!