There is something that smells about the omnipresent "third sector" in Wales, they seem to be consulted on every issue, receive huge amounts of public money, but who they actually represent is clouded in mystery!
I have lived with Epilepsy since 1982, epilepsy is a familial condition so lots of my cousins also live with epilepsy, but as far as I know none of us are members of Epilepsy Wales, we have never been approached to join Epilepsy Wales, it is not a body that represents us. I am not criticising Epilepsy Wales, I'm sure that it does great work, I'm just saying that it isn't an organisation that I am associated with so it doesn't represent my epilepsy!
One of the things that has peeved me about S4C, since its creation, is that it's subtitling service hasn't been aimed at Welsh speaking people who are hard of hearing but at non Welsh speakers. I have complained many times to S4C about this and the response has always been that this was the recommendation of the "Welsh Council of the Deaf" – again an organisation that claims to speak for me but has never bothered to ask my opinion!
The Welsh Assembly Government LOVES these "third sector" organisations, as representatives of public opinion, but never ever questions their actual mandate! As a Deaf Epileptic Welsh Speaker I am not represented by the so-called third sector in Wales, or a Labour Government which claims that these unrepresentative organisation's opinions are sacrosanct!