Many new faces at the Alpha1 Germany group leader meeting in Hanover
Author
Marion Wilkens, as published in Alpha1 Journal 2/2016
Group leader meeting organized by Alpha1 Germany in Hanover (Hotel Radisson Blu) from October 7th to 9th, 2016.
This time we were delighted to welcome new faces to our group, as we've grown by the number of self-help groups we've joined, and existing groups have also been taken over by new leaders. Our meeting began with a relaxed welcome session in the hotel's ARTs Bar, providing an opportunity to get to know each other. Afterwards, we boarded a coach from the exhibition grounds for an informative tour of Hanover and the surrounding area. The day concluded with a shared dinner and many engaging conversations. On Saturday morning, we started with reports from the individual groups, which hopefully alleviated any concerns the newcomers might have about the complexity of starting and leading a new group. In the afternoon, Ms. Franziska Benthien (a lawyer) gave an introduction to social law, covering topics such as care levels and disability cards. The evening ended with a pleasant toast at midnight. On Sunday morning, after breakfast, everyone headed back home.
Kerstin Wehlmann, as appeared in Alpha1 Journal 2/2016.
What topics were important to us?
We believe it's important to foster exchange among group leaders; good ideas can be shared and transferred to other groups. Experiences and even problems can be discussed and processed here. New group leaders receive support and suggestions; they aren't thrown in at the deep end.
Specifically, we worked on the following:
Together, we developed ideas for presenting the groups on our website: what other content from the groups can we add? Where should all the excellent reports and presentations from the groups be collected? Many great presentations are given at the group meetings that are worth publishing.
- Carina König (group leader in Austria and board member of Alpha1 Austria) and Ella Geiblinger (1st Chairwoman of Alpha1 Austria) showed us the online presence of their group leaders, which convinced us that it is good to work with photos and short profiles of the respective groups.
- How can group meetings be financed? Where can sponsors or donors be found? Some groups receive support from local branches of health insurance companies. How can speakers be found who are willing to give presentations on a voluntary basis? What legal aspects need to be considered regarding donations and sponsorships?
- How does one obtain financial support from Alpha1 Germany?
- How can I manage with the available budget? How do I find suitable accommodation (it doesn't always have to be an expensive hotel)?
- How and where can I pursue further education (e.g., through welfare organizations in the regions, KISS NARKOS, etc.)?
- Where can I obtain informational material for group members (e.g., patient library, airmail, oxygen suppliers, pulmonary exercise group)?
- How can we find new members (maintain contact with nearby clinics, Alpha1 Centers, lung days, rare disease days, staffing information booths at events…)?
- What information materials will I receive from Alpha1 Germany (roll-up banners, flyers, journals, etc.)?
- How does communication work? Communication between the association and the self-help groups (SHGs) primarily takes place via email. Responses and firm acceptances or declines to invitations or mailings are expected. Emails and voicemail messages must also be checked regularly for published information; the SHGs must be reachable – not around the clock, as it is a voluntary position, but regularly.
- And last but not least: what exactly is a self-help group?
What we understand by a self-help group:
Even though the self-help groups are one of the three pillars of the association (alongside members and doctors), they are independent.
In addition to the internal component, we also have a training component at our group leader meetings. This time it was Ms. Franziska Benthien, a specialist lawyer for social law, with the topic "What you should know about social law. Tips and tricks from the everyday life of a lawyer.".
There was a lot of information before and after the presentation – and of course also during the presentation itself, but we would like to highlight just one area here, namely the deemed approval provision § 13 para. 3a SGB V.
Marion Wilkens, as published in Alpha1-Journal 2/2016.
