Posted by Simon (213.122.37.36) on March 13, 2001 at 19:59:22:
In Reply to: Yes posted by Bob P on March 13, 2001 at 14:08:48:
Bob is right - we are working on an OUCH organisation in the UK, and the discussions were rather heated. However, I think cooler heads are prevailing, and with the gratifying increase in OUCH numbers generally over the last few months, I think the move to "affiliated" organisations around the world shows the strength of the OUCH idea, rather than being a threat to a monolithic structure.
Fundamentally it comes down to two issues, the legal and the practical. On the legal side, if we wish to have charitable status we cannot send dues to an organisation in another country. Practically, however noble in its ideals, the present OUCH structure makes it difficult to deal with issues which are specific to one country rather than another. (As an example of this, the oft-repeated cries against US insurance companies - whose behaviour I find both inexplicable and deplorable - simply have no resonance here because we have a State funded system. We have our own problems - and how!!)
On the system of "regulating" "controlling" or "authorising" OUCH groupings abroad, we come up against the familiar problem with any organisation of arguing about structures rather than getting on with doing things. I've been pleased to see recently that more are becoming involved in the latter, and the former being relegated to the its proper place of supporting that. I do think we are mature enough to realise that we have a common aim, but, of necessity have to have different ways of achieving that.
For the record, the aims of the proposed OUCH(UK) are to:
provide support for sufferers of Cluster headaches and their families;
increase public awareness of the condition:
work to improve understanding of the condition, its prevalence and its effects;
liaise with the medical profession to improve diagnosis and treatment;
provide information and access to Cluster Headache sufferers to those engaged in research into the causes, treatments and cure for the condition;
produce its own database based on the experience of sufferers;
maintain a website as a source of information and a contact area for those affected, and produce similar literature for those without internet access.
I think these are fundamentally in tune with the OUCH ideals - indeed we were very careful to ensure that they were so. It is very important that whatever our personal, regional or national perspectives we should work in concert for the benfit of all sufferers and supporters.
(On a personal note - if there's anything there that is ambiguous please put it down to the lateness of the hour here, and the fact that I am about to become (as actors say) "resting" jobwise! That has been something of a distraction and pre-occupation over the last few weeks.)
Simon