Best Practice Standards and Guidelines for Care of those with PWS

Caregivers Conferences:

Akadamie Mont-Cenis Conference Center

In 2008 and again in 2009, IPWSO, with the Regens-Wagner Absberg Centre and Wittekindshof Centre, jointly hosted the first and second specialised Caregivers' Conferences in Herne, Germany.  These conferences were the brainchild of Pam Eisen, Hubert Soyer, and Norbert Hödebeck-Stuntebeck and at their invitation a group of residential specialists, teachers, and medical specialists met to hammer out a set of Best Practice Guidelines and Standards of Care for those with PWS.

 

Pam in 2007 opening the conference

 We did this in the manner of lectures followed by workshops where the topic of the lecture was discussed in depth.  We shifted around from group to group, working incredibly hard and, at times, well into the night, getting our conclusions ready for presentation.  This was the most hard-working conference we had ever attended, and there was no let-up!  Everyone was there for the best interests of those with the syndrome.  The environment of the Akadamie Mont-Ceris was perfect - it was like a small, self-contained village set inside a glasshouse.  It was extremely eco-friendly and its enclosed feeling made us unite as a family.
From these two conferences came the first draft of what we nicknamed "The Book", a compilation of the outcomes of all our work over the two years.  With the help of our consultants, Jan Forster, Hubert and Norbert, this compilation was put into CD format and is now ready for distribution.  This is still a work in progress and as such, is to be used as a guideline for best practices, according to each country's specfic needs and cultures.  We all realise that not every country in the world can achieve the dream goal of having the very best residential care for those with PWS, but these guidelines are the best starting-point to make dreams become reality.

 The full set can be purchased for E30 (includes postage).  Please contact IPWSO secretary in the first instance: linda.thornton@xtra.co.nz to order.  Or go to our website: www.ipwso.org