National Institute for Health and Clinical Excellence (NICE)
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Autistic people will receive better care if GPs develop a national register, says NICE

NICE is calling on GPs to develop a national autism register to ensure autistic people receive the tailored care they need.

Autistic people will receive better care if GPs develop a national register, says NICE

The register will mean patients on the autistic spectrum will be easily identifiable to healthcare professionals working within the GP surgery.

This will help the staff to adapt their approach to suit their patient’s needs – for example, nurses can ensure children on the autistic spectrum are called for vaccinations at the beginning of surgeries when the waiting rooms are quieter and could turn down lights for those with sensory problems.

A Westminster Autism Commission report said this work by NICE would end the statistical ‘invisibility’ of autism within the healthcare system.

Emily Christou, national strategy coordinator, Westminster commission on autism 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 as such patients will continue to feel that their healthcare needs are going unmet. We warmly welcome this most important NICE indicator.”

The term ‘autistic spectrum disorder’ includes both mild and severe forms of the condition. Differing levels in cognitive ability, sensory problems and the presence of learning disabilities can make diagnosis difficult and may lead to people being overlooked by healthcare, education and social care professionals.

There are around 700,000 autistic people in the UK. Seventy per cent of autistic adults say they do not get enough social service support and one in three will experience a mental health problem.

Dr Andrew Black, GP Mortimer Medical Practice and deputy chair of the NICE indicator advisory committee said: “GPs play a vital role in helping vulnerable people to get the correct diagnosis and the support they need. This new NICE indicator will help them to achieve that.

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

The new NICE indicator says patient registry details will be kept anonymous outside of the GP surgery. This is so the data can be used to generate a national picture of the care people with autism receive.

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

 

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