Autism Diagnosis
Debate between Norman Lamb and Bambos Charalambous(7 years, 2 months ago)
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Bambos Charalambous
The hon. Gentleman makes an excellent point. The NICE guidelines are drawn up by experts who are qualified in their field, and it is only with the collaboration of the experts that the guidelines are set. They are set by experts and should be strictly adhered to.
The delay between referral and diagnosis not only causes more potential harm to children, but leads to untold stress and anxiety for parents and carers who cannot understand their child. If the delay was a matter of weeks, that would be bad enough, but thanks to research done by Dr Laura Crane at Goldsmiths, University of London we now know that in a sample of 1,047 parents who were surveyed, the average delay from referral by a health professional to diagnosis was three and a half years. The delay was more than four years for children diagnosed with Asperger’s syndrome.
The delay is alarming, and I have had difficulty corroborating it with any Government data. That is because data on the length of time from referral to diagnosis of autism are not collected by NHS trusts or clinical commissioning groups, so there is no way of holding the NHS to account for that failing. Since this debate was made public, I have had numerous tweets and emails, as have colleagues, that support the findings of Dr Laura Crane’s study and suggest that the delay in diagnosis is taking years, not months.
Norman Lamb (North Norfolk) (LD)
Does the hon. Gentleman agree that NICE needs to look at reviewing its guidance? It is not just about the first appointment. There is a risk that there is gaming of the system. People get their first appointment, but then it is stretched out to three and a half years, as we know. Getting the diagnosis is the critical thing.