What would a champion of our community be like?

We’ve had a number of people ask recently whether we have volunteers from the community helping us to run things. Some have called these ‘forum ambassadors’, others ‘advisory panel members’. The short answer is that at present, no such role exists.

Still, we thought this presented a great opportunity to let you know about some of our plans.

Members who have been with community for over a year might recall that we had a call for members of an Advisory Panel made up of forum members some time ago. We were really pleased to have received some applications for this but interest was a bit lower than we expected so we put this on hold to consider it a bit further.

Since then, we’ve given a lot of thought to how we can involve community members more in the running of the forum . At the same time we are planning for a new version of the forum we want to take the opportunity to consider how community members are involved - and we see a clear role for introducing a role of 'community champion'

We’re still working out the details but the champions would be forum members who would support the community and the community team, help to resolve issues, encourage people to join the community, welcome them once they arrive and help them during their time here. The champions would be active members and the role would be essential in building a supportive, lively and friendly community.

The community champions would lead by example. In our initial discussions about the role, we also thought the following would be good characteristics in a champion:

Open to honest discussion
Involved in the Parkinson’s community more widely
Excellent listeners

We’ll be posting more about this over the next few months but in the meantime…

Would you be interested in hearing more about this opportunity?

What sort of characteristics do you think would be good in future community champions?

:laughing: :rolling_eyes:

Thick skinned
Able to deflect flak
Able to keep head below parapets
Able to handle smart alecs
Willing to work long hours for no pay, without appreciation
Retention of sanity not guaranteed

i would like to here more about it please ezinda:smile:i think it is a really good idea that your now lettin the community members get involved with the forum more,i like the idea also that your selfs the moderaters have involved ur selfs with in the forum more a s well,postin more frequently,and joinin in with other members.i think members should be able to listern to other folks problems,and able to relate back to them,with out any debates kickin off at all.i think that they should be a pd sufferer or a carer or family member,cus we are all part of this forum.i think that its a good idea if there involved with pd more wideley,like fund raisin ,kinda thing,but also i belive that others on the forum should have the chance as well,so may be one person forum ,one person that does more on the out side as well.they need to be very freindly people,and not make some one feel awkard to open up to them,cus thats the hole point,people wont to open up and speak freely.i think that pd sufferes have a lot of knolage anyway cus we are livin with the disease,but also i no there is so much more info out there that we dont no,so i think it would be a good idea if the members picked would be kept in the picture more of wot is happinin,ino we have the website and it gives us plenty of info,but we would need some trainin i think also.also to be able to keep contact with the moderaters much more easier,and staff involved with puk.:smile:

red cape and a blue all-in-one ?

Like! @krugen68!
The uniform is going to be the carrot!

They would have had lush curly mousy/brown hair that's gone grey and receding rapidly.
Blue eyes like limpid pools
A permanent vacant expression
A large nose which belies its narrow nasal passages
A robust sense of humour

sort of like Gerard Depardieu with a scottish accent?

I would like to do it ezinda - Paul

[This post has been edited by moderators because it does not comply with our forum guidelines. You can find the guidelines here: http://www.parkinsons.org.uk/forum-terms-and-conditions/forum-help/forum-user-guidelines.aspx ]

Gerard Depardieu in the film Cyrano de Bergerac, with a Scottish accent, and a set of curling tongs and it would be a bit closer.

And a bit more weather beaten, the champion of our community should have had a hard paper round in his formative years to re-enforce that life is tough as if they didn't know already being brought up in a septic tank with only the water of a boiled egg for sustenance ...

... That kind of a thing, in my opinion, allegedly.

The sort of person I have in mind would have had at least a milk round. Though his mother might have helped out on cold mornings.

What sort of person?

Maybe someone like a Nelson Mandela with a bit of Adolf Hitler thrown in for good measure, in my opinion, also allegedly.

1) He/she must want to do the job.
2) be able to see both sides of the story.
3) be decision makers.
4) be true to themselves (then no one can call them liars).
5) be diplomatic.
6) have the energy to do the job.
7) have a sense of humour.

These are the qualities I would be looking for if I was selecting someone to champion the ideals of not just the Forum but the PUK website as a whole.
I have spoken to many members of branches and have found that the great majority are not even aware of the site despite having access to a PC.

support Bogmans excellent list of qualities should also be someone who can represent views of whole community not just their own. An ambassador by definition represents agency or country of origin not self.

nice to see someone taking this seriously. This is important to get right.

This site seems to have been dying lately, few new people stay . Existing people are busy fighting each other and In amongst all this, who is offering support?.

Find someone who does not have any other agenda than to support other PWP, raise the profile of PUK and be prepared to listen to and respect the views of others (even if they do not agree)


Hi all,
It’s really good to see that this conversation continued over the weekend. Thanks to all for giving this some real thought. And yes it is important and does make a difference. It’s been amazing how much we’ve learned in the past year from conversations with people on the forum. Having more of that participation can only make things better here. It would also be really great for me personally to work with a team from the community.

rubbish, we’ve just removed your contact details above (remember that the site is public!) But we have kept your number and will be in contact. Thanks so much for volunteering!

Bogman, that’s a great list—thanks. I think you’re right that someone with the desire to support community members and an ability to see both (or several) sides of a situation would really be an asset.

Carolineb211 you’re right. Imagine a newcomer walking into a room looking for support and walking right into a brawl. It can be offputting to say the least. While there are things we can begin to do on our end to improve the environment, developing a safe and supportive space is ultimately up to community members.

We’ll leave this thread open in case anyone wants to add more comments on this but we’ll also let you know as we get further in planning our community champions programme.

I wanted to add that I personally find it really helpful when forum members signpost others to existing content that helps with their question. It might be a link to a previous thread or to relevant information resources on our website that can answer a question that has been posted. Because our forum and the main content on our website are currently quite separate it means people aren't always aware when there are existing resources or services that can answer their question. This is something we are planning to improve in the next redesign of our website but in the meantime, I really appreciate when members have an awareness of Parkinson's resources and services that they share with others. I think this would be very useful in a community champion role too. Thanks!

Liz (Head of Digital, Parkinson's UK)

Hi Liz.

I've been around here causing trouble for about 3 years now (I got a life sentence), and often encounter newbies asking the same old questions (not their fault) over and over again. I then go searching for previous answers, usually by using keywords, and often find them (eventually) a couple of years back. Is all that old data still accessible, and will we be getting improved search facilities in the brave new world?


p.s. "Head of Digital" is a good title. Do I come to you when my head stops controlling my digits?


Hi Ray
Firstly, thanks for the job title compliment :)
The search results bring back posts back as far as May 2008 when this forum was launched. (The only exception is the social club which as discussed recently is archived after 6 months). As you will know - there's a lot of data for the search to look through and I find the best way of searching is to use some of the more advanced options to filter results; eg limiting your search to look for words in the tile, or to a particular part of the forum or using date restrictions where possible. I think there are definitely some improvements that could be made to the search and we will be listing these in our requirements for the site. Thanks for the feedback, Liz.