Recommended action plan (PSSD Hilfe Deutschland e. V.)

Topics related to activism.
Numby
Posts: 152
Joined: Tue Sep 19, 2017 11:55 am
Location: Germany
Contact:

Recommended action plan (PSSD Hilfe Deutschland e. V.)

Unread post by Numby »

As some of you know, the German PSSD organization has recently had a number of successes. On Friday we reached a new milestone and met several experts on psychiatry, sexual medicine and pharmacology at the most important German congress in the field of psychiatry, psychology and neurology.

We know that several people would like to know in detail what we did and how we achieved our goals. Therefore, in this post, I will first give a brief overview of the different steps the PSSD Hilfe Deutschland e. V. took. In a second step, I will describe in detail what action we think is required if you want to "copy" our strategy (which we think is very useful 8-) ).

PART A: Different steps/stages PSSD Hilfe Deutschland e. V.

2017:
PSSD Hilfe Deutschland e. V. was founded by a group of people whose primary interest was to initiate research projects and to fund these projects.

2017:
a WhatsApp group was set up to facilitate communication, to offer moral support and to discuss experiences concerning physicians, medication, etc.

2017:
meeting with research staff from a university clinic (UK Ulm)

2017:
attempt to find volunteers for a research project (failed due to strict criteria)

July 2019:
major remodeling of the website http://www.pssd-hilfe.jimdo.com

August 2019:
TV reports on PSSD

September 2019:
emails to relevant clinics/centers of all German university hospitals (Universitätskliniken)
----focus was on specialty centers for psychology, psychiatry, pharmacology, andrology, gynecology and other specialty care centers
----structure of the document:
  1. Who we are
  2. What PSSD is (symptoms, consequences)
  3. What our key objectives are
  4. How we want to proceed
  5. What they [researchers] can do
----style: very professional, non-emotional, formal and precise (technical terms, etc.)
----design: corporate design, business letter-like layout with letterhead and footer including contact details, etc.

October 2019:
conference calls with several researchers

November 2019:
meeting with highly respected researchers at one of the most important congresses in the field of psychiatry, psychology and neurology
aims:
----informing professionals about PSSD (sexual AND non-sexual symptoms, consequences for patients, ignorant reactions by GPs/specialists, research hypotheses)
----building a network of interested professionals

[PLANNED/ENVISAGED] March 2020:
follow-up meeting at another important congress

PART B: Recommended action plan:
  1. Finding a group of people who are willing and capable of working strategically. You will need an immense amount of time, at least 8 to 12 hours per week and much more at peak times. This can be difficult to reconcile with a full-time job.

    Jobs/roles to assign: website designer, strategic planning group, communications “manager” for external communications, WhatsApp group admin(s), administrative jobs like processing incoming emails, etc., PR man/woman, etc.

    Skills required (depending on role): strategic thinking, very good verbal skills, good communication skills, good knowledge of html, good people skills, very good knowledge of PSSD symptoms and preferably understanding of underlying mechanisms, patience and frustration tolerance, ability to cope with stress/to work under pressure
  2. Founding a charitable organization (like eingetragener Verein/e. V.)

    Why? to increase credibility towards those affected/professionals/the media, etc.; because it’s easier to collect donations, you gain official status and establish a professional presence (corporate design, business cards, website design, official letterhead, etc.)
  3. Recruiting members, the more the better
  4. Creating a website that looks professional (professional design/corporate design; rather formal language; 100% correct spelling; no emotional pharma bashing, rather objective/informative style) and conveys the most important information about PSSD (symptoms, research, EMA decision, etc.).

    Why? professional presence, facilitates communication with those affected,
    It’s your “business card” to the public. PSSD patients as well as professionals will visit your website and their decision on whether to contact you/to react to your emails/letters or not depends on how professional your internet presence is.
  5. Drafting documents for different purposes (i.e. informing professionals/physicians, calling to action, etc.) and addressed to different target groups (physicians, research staff, sufferers, the media, etc.).
  6. Identifying the right hospitals, centers and contact people: We identified more than 200 people.
  7. Creating an excel spreadsheet, otherwise you will lose track of who is who and, later on, who you have contacted and what their response was.

    The excel spreadsheet should include information such as: name of hospital, name of clinic/center, contact details (word mail merge, step 8!!), appropriate salutation (country-specific, very important in Germany; important in step 8 for word mail merge), etc. Make sure you use separate columns for things you need for the mail merge process in step 8.
  8. Contacting specialists using the respective document created in step 5. Use the mail merge function in Word to insert the required content from the excel spreadsheet.
  9. Scheduling and making telephone calls with the people who reacted to your letters and who show genuine interest in cooperating with you. Discuss further steps.
  10. Lots of options: Contacting the media, meeting people, posting comments on relevant websites, ???
Last edited by Numby on Sun Dec 01, 2019 3:30 pm, edited 1 time in total.
sulawesi
Posts: 177
Joined: Tue May 24, 2016 1:14 pm
Contact:

Re: Recommended action plan (PSSD Hilfe Deutschland e. V.)

Unread post by sulawesi »

Thank you so much numby! This is a very important post and a good plan for others to follow us.
Post Reply

Who is online

Users browsing this forum: No registered users and 8 guests