National Institute for Health and Clinical Excellence (NICE)
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NICE autism quality standard will help tackle 'real variation in care'

NICE's new quality standard on autism will help services address the current variation in diagnosis and treatment of the disorder, according to experts.

Autism is a lifelong condition affecting than half a million people in the UK. Of these 80,000 are thought to be children of school age.

In recent years, initiatives such as the Autism Act and the National Autism Strategy have aimed to address the complex needs that people with this condition have.

However, the type and quality of care for autism continues to vary across England and Wales meaning that people do not always receive a quick diagnosis or the services they require.

To help reduce this variation in care, NICE has produced a quality standard on children, young people and adults with autism. The quality standard contains eight measurable statements, which together can improve the quality and consistency of care for people with the condition.

The first statement recommends that people with possible autism who are referred to an autism team for a diagnostic assessment have the diagnostic assessment started within 3 months of their referral.

To ensure people have a swift diagnosis, NICE says it is important that this assessment is conducted as soon as possible so that appropriate health and social care interventions, and advice and support can be offered.

People with autism often have symptoms or aspects of other conditions that, if unrecognised or untreated, can have a significant impact on their lives and their families and carers. Such conditions include attention deficit hyperactivity disorder (ADHD), depression, anxiety and motor coordination problems.

Consequently, the second statement calls for people having a diagnostic assessment for autism to be also assessed for coexisting physical health conditions and mental health problems.

The needs of people with autism are varied, with some people needing complex levels of support from a range of professionals, while others may not want or need such support.

As a result, a further statement calls for people with autism to have a personalised plan that is developed and implemented in a partnership between them, their family and carers if appropriate, and the autism team.

In addition, the quality standard calls for people with autism to be offered a named key worker to coordinate the care and support detailed in their personalised plan, as this can help ensure that those with autism receive an integrated package of care.

NICE recommends that the person who accepts the offer of a named key worker should help coordinate their care, and that they should be involved in the decision about which professional is the most appropriate to provide that support.

Elsewhere, the quality standard recommends that people with autism should not be prescribed medication to address the core features of autism. This is because drug treatments have been shown to be ineffective in addressing the core features of autism, and carry significant potential risks.

Jonathan Green, Professor of Child and Adolescent Psychiatry at the University of Manchester, and member of the quality standard committee, said: "Across England, there is real variation in the type and quality of care people with autism receive, which can have lasting effects on both the person and their families and carers.

"It is important, therefore, that there are clear standards in place - based on the best available evidence and expert consensus - which specifically focus on key areas needing improvement.

"These will aid health and social care professionals and commissioning bodies to deliver the very best for people with autism."

Professor Gillian Leng, Deputy Chief Executive and Director of Health and Social Care at NICE, said: "People with autism can find everyday life challenging and confusing, and often have symptoms or aspects of other conditions that go undiagnosed.

"This quality standard outlines how to deliver the very best care and support for both adults and children with the condition."


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