I should make clear that I find no fault with any of the groups themselves. There are indeed some very generous, caring people who run them, and I am glad that they are there for the people that need them.
However, the NAS as an umbrella organisation doesn't actually provide very much of that - the vast majority of the hard work is done by volunteers who are generally just regular members and affiliates.
Their forum is even worse - there are no trained counsellors and no NAS representatives on the forums except for one or two moderators (and their actions have been somewhat controversial lately - though I think without malice). There are a very small handful of people who are just regular forum members like me, not all NAS members, who are providing that entire service solely out of their desire to help out, and with no appropriate training.
Because parents do find local groups more easily and so disappear from the forum, it is in the bizarre situation where a handful of mostly late diagnosed male adults are doing their best to field queries from vulnerable female teens and distraught parents of very small children, some of whom only hours ago first discovered their child's diagnosis. Sometimes we can help, but very often we are at a loss what to say or do. I have to admit, I go there less often now, as I find this really upsetting, and feel helpless to improve the situation - and many other users seem to burn out from the same frustrations.
As the NAS is the most common first point of access that evaluators point people to, this simply isn't good enough. No matter how well NHS diagnostic teams around the country are funded, the people they diagnose cannot all hope to be dealt with by a tiny number of untrained fellow service users. GRRrrrr!
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When you are fighting an invisible monster, first throw a bucket of paint over it.
14 Mar 2016, 7:56 am
