Autism patients: GPs in England urged to keep register
GPs in England are being encouraged to keep a register of patients with autism in order to improve the care they receive.
Health chiefs say a register would alert GPs to the specific needs of adults and children with autism and help tailor services for them.
The National Autistic Society said it would “help improve the health and wellbeing of autistic people”.
But getting a quick diagnosis was still an issue, a child autism charity said.
Autism is a lifelong, developmental disability that affects how a person communicates with and relates to other people, and how they experience the world around them.
GPs in England already keep a register of patients with learning disabilities, and the National Institute for Health and Care Excellence thinks patients with autism should be easily identified by healthcare professionals too.
NICE says a register – which would be anonymous outside a patient’s surgery – would help staff to adapt their approach to suit patients’ needs.
For example, doctors might need to take time to explain information clearly, nurses could vaccinate children at quieter times of the day, and surgeries could turn down lights for those with sensory problems.
Robyn Steward, 30, has autism and lives in south London. She says going to the GP can be a difficult experience.
“I used to dread ringing up. I have lots of appointments and the receptionists are very understanding.
“But a lot of autistic people aren’t verbal and don’t find it easy.
“GPs assume a level of understanding but they need to give us more processing time and more time to go through issues.”
She says a flag on medical records telling GPs about an autism diagnosis could make things easier.
And finding out how many autistic people there are in each local area is “really important”, Robyn says.
“Adults are often under-supported.
“If you know there are lots of women in one area then you can set up a woman’s group.
“It’s about looking at the needs of the community.”
Mark Lever, chief executive of the National Autistic Society, welcomed the autism register proposal but said it was 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.”
Mandy Williams, from the charity Child Autism UK, said a register could also help track how many people have autism and “enable better planning of services in the future”.
But she added: “It doesn’t address the more fundamental problem of actually getting a diagnosis in the first place.”
The guidance from NICE over an autism register will now need to be accepted by NHS England before it is put into practice in GP surgeries in England.
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