This site is intended for health professionals only

GPs set to maintain register of autism patients under QOF proposals

NICE is recommending a new QOF indicator for GPs to create and maintain a register of all autism patients, under proposals published today.

The recommendation, which NICE has set out in a series of proposals for the QOF ‘or other incentive schemes’, has been brought in to help surgeries improve care and will build on previously published guidance encouraging tailored care for patients on the autism spectrum, the proposals say. 

The proposed indicator states ‘the practice established and maintains a register of all patients with a diagnosis of autism’, but no extra information is provided.

NICE suggests that patients will be easily identifiable within practices and staff will be able to make adjustments to suit their patients, such as light dimming for those with sensory problems or appointments at quieter times during the day.

It adds that patients’ data will be anonymous outside the surgery and will be used to review long-term care and health outcomes, including ease of access to wider care services and any evidence of unequal access.

The proposals stem from a 2016 report by the Westminster Commission on Autism and National Children’s Group – titled ‘A Spectrum of Obstacles: An Inquiry into Access to Healthcare for Autistic People’ – which recommended ‘an anonymous national primary care register for autism should be created based on a single code in GP records.’

The commission claimed that over 94% of people with autism supported the proposal.

Emily Christou, national strategy coordinator, Westminster Commission on Autism and National Children’s Group 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. We warmly welcome this most important NICE indicator.’

Dr Andrew Black, a GP at Mortimer Medical Practice and deputy chair of the 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.

‘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.’