Ivy'v Story What care and support is available for those with deletion 22q11 syndrome?


Adam

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NICE neurological care standard
11th November 2015

Max Appeal to attend NICE meeting to look at neurological care standards. Thinking about getting awareness at the highest level ie NICE about the huge incidence of psychosis for people with 22q11DS.
Update to follow.

Update from Claire:

I attended (11.11.15) a NICE scoping workshop for a new guideline being developed for neurological problems. NHS England have asked NICE to develop a clinical guideline on the assessment, diagnosis and referral of neurological problems to assist healthcare professionals in primary and secondary care. Max Appeal is registered as a Stakeholder for the guideline so we have the opportunity to comment on the draft scope and be involved in the consultation process. It's a good way to raise awareness of 22q DS and help ensure undiagnosed cases maybe more easily identified.