I’m trying to understand the current direction of PUK but I’m struggling to find any information that can help me to work it out.
I’ve been looking for information about the Members Day 2018 but I can’t find the annual report or the annual treasurer’s accounts for 2018 anywhere, though I may well just not be looking in the right place. The web page relating to the event advises that answers given to questions asked on the day will be posted ‘here’ but I don’t know where ‘here’ is and can’t find those either.
I also read that the new strategy for 2019 on-wards has been approved but I can’t find any information about it and I also don’t understand what ‘Team Parkinson’s’ is or what it intends to offer in terms of support for people living with Parkinson’s today because only research seems to be mentioned as it’s focus.
I don’t understand why self management groups, which are quoted as part of the success story of the ‘Take Control’ agenda on the achievements web-page, have been suspended without any apparent notification and I have absolutely no idea what ‘Parkinson’s Is’ is about. Is the promise of a raising awareness campaign actually going to be people living with (sorry - affected by) Parkinson’s self loading videos which then get posted on social media? And how does this dovetail in with the membership campaign, whatever that is going to be, that is apparently going to coincide with world Parkinson’s day? The 11th of April is fast approaching and it would be good to know in advance what this marketing (is it marketing or raising awareness?) campaign is going to look like? I’ve spent the past couple of weeks explaining to people that the recent documentary on the television does not mean I’m about to be cured or even that there will be a cure in my lifetime - because there won’t. This is in addition to having to explain that people do not need to speak to me very slowly or attribute everything I forget to my Parkinson’s. It would be good to know in advance what the new campaign is going to look like so that I can decide whether to keep going out or hide away for a month or two :-s
I read that this is a transparent organisation so I know that all of this information will be available somewhere, it’s just that I can’t find it so any pointers in the right direction would be gratefully appreciated. J