COMMUNITY ADVISORY GROUP
What is the Community Advisory Group?
We held our first meeting Tuesday 8th March 2011 at the Niche. Apart from Ann Jones and Dee who were there to get us going and myself (Sarah Morris) as coordinator, we had Jennifer Morris, Vera Ingram, David Jeppesen and Tracey Jones present. Apologies were received from several other invitees who couldn't make this first meeting but are very interested in becoming a part of this mixed community group.
We'll be meeting usually about every 3 months and we are there to gather ideas, feedback and concerns from the wider Huntington's community by providing a more informal contact point than the Board or office. We can then talk to the Staff and Board on behalf of the community and pass back issues and ideas for further action or investigation. We will also provide feedback to suggestions made by management and Board.
It is hoped that you, out there, will contact one of us if you have a problem with something that you don't feel you can take to the Association yourself. There are loads of things that we can be doing to help ourselves and the Association and the HD Families, we just need to know what they are. Hopefully group members will bring back ideas from their own support groups (GP, Youth, Carer etc.) and be available for anyone in the wider community, family and friends, who may wish to have an issue or idea passed back.
. . . and they're not even necessarily ‘issues', they might just be things that occur to you. They might be relatively small things in the overall scheme but if we can sort if for you and for the next person who will experience it, it's worth having a go at. There are things you'll have grappled with and beaten, tell us and we can pass the information out.
We had a lively discussion in our first small group and several issues were raised which were immediately passed back to Dee for further action and investigation. They included such diverse things as....
Finding a local Pharmacy or a chain of Pharmacies who will help out and provide the service of putting medications into blister packs where they may not be supplying all (or any) of the medications themselves.
Centrelink and getting the run around when trying to deal with them: Also the issue of how tricky the disability phone number is to use - for anyone with a disability. This is a much larger problem, ideally we would like to have one person/area to talk to who know the HD issues and can give correct information without having to pass you around to several different areas. Also, if the Association can contact someone there officially, it may be that the effective advice can then be passed on to all.
We would like to encourage members to make connections within our community. Not everyone wants to belong to a support group but it can be nice to find one person in a similar situation to you to talk to sometimes. Get more personal profiles in the newsletter, probably starting with us.
Friends of Huntingtons: Find and use anyone who is willing to help out. Take some of the pressure off the community and spread the load.
Mentoring and Youth Mentoring: Who is out there that can be of use? Our email address for you to contact us is, community@huntingtonswa.org.au.
Can't wait to hear from you.