NICE has recommended the register be implemented with a new QOF indicator.
The proposal follows the findings of the Westminster Commission on Autism, set up by the National Children’s Group and chaired by Labour MP Barry Sheerman. Its report found that 76% of autistic people and parents said their GP did not make any reasonable adjustments for them or their autistic child. The report said this was an indication that health professionals may not consistently identify and make accommodations for the needs of autistic people.
NICE said a register would make autistic patients more easily identifiable to healthcare professionals in GP practices and help staff adapt their approach to suit patients’ needs.
For example, NICE said, it would allow staff to arrange for autistic children to come for vaccinations at quieter times and turn lights down for those with sensory problems.
The commission report recommended that the register could be set up using a single diagnostic code in GP records. It said 95% of autistic people wanted doctors to have a note on their computer screen to tell them the patient is autistic.
The report found that 40% of GPs said they had received no training on autism at degree level, in training or in practice, while 65% said that healthcare professionals ‘rarely’ or ‘never’ understand the physical and mental health needs of autistic people.
The differing levels of cognitive abilities, sensory problems and learning disabilities found in people with autistic spectrum disorder can make diagnosis difficult and lead to people being overlooked in the healthcare system, NICE said.
Around a third of the UK’s 700,000 autistic people will experience a mental health problem.
Deputy chair of the NICE indicator advisory committee, GP Dr Andrew Black 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.’
He added: ‘It is important that we reassure that their medical notes are confidential and any national data will be anonymised.’
The Westminster Commission national strategy co-ordinator Emily Christou 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.’