Updated NHS Guidelines

The NHS has published new guidlines on the management of ANSD. They’re not perfect, but they’re a lot better than anything we’ve seen so far….Interestingly the further tests they refer to are being investigated in the clinical study that Oliver has enrolled in at the University of Manchester.

Well worth a read whichever side of the pond you are on.

Of course, as we all know here in the UK, getting anyone to actually follow these will be the next challenge….I’ll bet you anything you like, the majority of Audiology departments won’t even have seen these, let alone read or implemented them by the end of 2013. 

2012 NHS Guidelines for the Management of ANSD

Facebook

We have been inundated since the programme about ANSD ran last week. Thousands of people have visited our little blog and we have had emails, messages of support and calls from all four corners of the globe.

We are humbled and astounded.

As I said to someone yesterday – we don’t have all the answers, but we are happy to point Parents in what is hopefully the right direction. In a world where the decisions you make based on ‘expert’ opinion have such far-reaching consequences, it is so important sometimes just to be able to talk things through with Parents who have been on the same journey, free of professional input or dogma.

That’s why we started our forum last year and why we have put together the Parents network. The latter is already proving invaluable to some new families on the journey. The forum was, sadly, less successful, but I suspect that is down to us.

We also have a Facebook group that we set up last year. We are not trying to detract from any of the other groups and forums that exist, but I can’t help thinking that there is still room for more, else we wouldn’t get so many emails and calls (which, of course, we are always happy to receive). So please do come along and join the group – say hi and ask some questions to get it going – I really hope it works. Do also pass it onto your friends and acquaintances.

By Parents for Parents, that’s my moto….The blog will also update on there from now on.

Parents of Children with ANSD Facebook Group