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NICE calls for national autism register to improve primary care

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GP practices will potentially be paid to keep a register of their patients who have an autistic spectrum disorder, under new advice from the National Institute for Health and Care Excellence aimed at improving quality of care.

If taken forward, it is hoped that the move will ensure healthcare professionals, including practice nurses, will be able to easily identify patients in their surgery who are on the autistic spectrum.

“One of the most compelling strands of evidence found in our recent healthcare inquiry, was the critical need for an indicator for autism”

Emily Christou

NICE has proposed that the establishment and maintenance of a register of all patients with a diagnosis of autism be added as a new “indicator” to the quality and outcomes framework (QOF) – the national performance management and payment systeme for general practices.

The potential new indicator, developed by NICE and published today, follows publication of guidance aimed at ensuring autistic people receive tailored care.

It is one of a “menu” of indicators that NICE has recommended be added to the QOF. NHS England will now decide whether to take it forward for negotiation with the British Medical Association about being added to the framework.

NICE said it hoped that, by keeping a register, practice staff would be able to adapt their approach. This could include nurses arranging vaccinations for children on the autistic spectrum at the beginning of surgeries, when the waiting rooms are quieter, and turning down lights for those with sensory problems.

In addition, it is expected that information will be shared to create a national – but anonymised – register about care for autistic patients.

A report published last year said that the introduction of the NICE indicator would end the statistical “invisibility” of autism within healthcare services. The report – titled A Spectrum of Obstacles – was published by the Westminster Autism Commission.

Emily Christou, national strategy co-ordinator for the commission, said: “One of the most compelling strands of evidence found in our recent healthcare inquiry, was the critical need for an indicator for autism.

“Without this, GP surgeries cannot be expected to make reasonable adjustments for patients with autism and patients will continue to feel that their healthcare needs are going unmet,” she said. ”We warmly welcome this most important NICE indicator.”

“It is important that we reassure [autistic patients] that their medical notes are confidential and any national data will be anonymised”

Dr Andrew Black

Dr Andrew Black, deputy chair of the institute’s indicator advisory committee, said the new NICE indicator would help practices to “play a vital role in helping vulnerable people to get the correct diagnosis and the support they need”.

“The Westminster Autism Commission report found the majority of people diagnosed with autism felt a register would be beneficial to them,” he said. “However, we know some people may feel being on a register means a label will be placed upon them, and this makes them uncomfortable.

“It is important that we reassure that their medical notes are confidential and any national data will be anonymised,” he added.

Mark Lever, chief executive of the National Autistic Society, also welcomed the move, describing the creation of a national register as a “significant moment” in helping to improve care.

“But it’s not the only answer. It must be accompanied by continued efforts to improve GPs’ understanding of autism so they can recognise the needs of different autistic people and provide the right care and guidance,” he said.

“Being autistic can be challenging at times, but we’ve seen again and again how awareness, understanding and early support can make all the difference,” said Mr Lever.

This year’s set of NICE indicators also includes proposals to improve the management of atrial fibrillation and postnatal depression.

Professor Daniel Keenan, associate medical director at Central Manchester University Hospitals NHS Foundation Trust and chair of the indicator advisory committee, added: “Indicators are a key part of NICE’s drive to improve people’s lives, enhance the quality of care in the NHS and use its resources wisely.”

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