Hi Nicole and Jane,
Do not know if you are aware there is a chapter of VBF in Europe. www.vbfeurope.org
I believe. There are other people from the UK and London on that group that I have talked to.
You are correct Nicole on getting profesional opinion, but myself and other adults on the group give more of the "been there done that" opinion. I have come acrossed many doctors in my life that do not even understand my conditions (not just PWS) until I educated them on it.