Well, in my previous post (a few hours ago), I did say to take a closer look at the MEGA site in case there was something I’d missed – and too right I was. I had failed to read the new MEGA blog post, thinking that it was just about the change of deadline for applications to join the patient advisory group. I hadn’t realised that it also provides a schedule for subsequent weeks. Here it is:
- 9am 13 December 2016 – Deadline for applications to join the MEGA Patient Advisory Group
- 13-14 December – Applicants contacted and group members confirmed
- w/c 19 December – Papers and key information sent out to Patient Advisory Group members
- 29 or 30 December – Patient Advisory Group teleconference and/or e-group meeting held
- 4 January 2017 – Back-up call for Patient Advisory Group if needed, to address outstanding issues from December meeting.
So patients are to be given a maximum of eleven days to read the ‘papers and key information’ before discussing it and -presumably – suggesting possible alterations in a teleconference or e-group meeting over the Christmas period! So not only are they expected to do this over Christmas, but the twelve days of Christmas has been shortened to a maximum of eleven. Notice the w/c in there – not meaning ‘toilet’ in this instance (although some might think this an appropriate place to sling the schedule) but ‘week-commencing’, so the papers could theoretically arrive any time that week, which might be as little as six days before the conference.
At least they accept the possible need for a backup call ‘to address outstanding issues’ and also feel that some explanation is due. They say:
The reason that the timescale is so short is because the mainstream funder to whom we want to apply for MEGA funding has an application deadline in early January 2017. This deadline was only recently announced and was different to the timings we expected.
and:
If we miss the deadline for this funder, we will not be able to apply again until 2018.
Even so, to use an old joke from Have I Got News For You, the words piss-up and brewery spring to mind. And of course many will say that they’ve carefully planned it like this to deliberately discourage and marginalise patient involvement. I can fully understand that point of view. If MEGA really want to win back the trust of the patient community, they are not going the right way about it.
Does this make an difference to my decision to apply for the patient advisory group? I’m still processing that one. But I’m getting more and more annoyed. Three more words have sprung to mind: ‘taking the’ and ‘piss’. And it’s not us that’s doing it…
(My normal pristine standard of vocabulary will be resumed in the next post.)
See also this OMEGA post which I should have read yesterday, including pertinent comments by Peter T.
spoonseekerdotcom 