Calls for Autism Health Checks across Hertfordshire

Our Report, Autistic People’s Experiences of GP Services in Hertfordshire, is one of the first to capture Autistic people’s* voices in detail and reveals underlying concerns, fears and barriers that can prevent them from accessing healthcare. The Report also details positive changes being trialled – such as Autism Health Checks, which could be promoted as best practice across the County.

In 2020, there were an estimated 8,900 adults with Autism Spectrum Condition living in Hertfordshire. (This doesn’t include those waiting for a formal diagnosis, so the number is likely to be much higher.) Many are not recorded on GP registers as being autistic, which limits the support that can be made available to them.

Local NHS leaders want to use this research to improve health care for autistic people.

* The term ‘autistic people’ has been used throughout this report as the preferred term for most autistic people, in accordance with research and guidance from the National Autistic Society.

What did people tell us?

Respondents shared a wide range of positive and negative experiences about accessing GP services and the impact on their health.

Some respondents shared examples of good experiences of GP Services where particular members of staff had been especially kind and accommodating, which made a significant difference to their experience. Others said they had received reasonable adjustments which had helped them when making and attending appointments.

However, many said the entire process of accessing and visiting their GP practice was so difficult, and caused such distress, that they avoided it completely. This put their health at risk. Common reasons were difficulties communicating, unmanageable waiting times and feeling dismissed or rushed by staff.

Other barriers that respondents commonly faced included:

• Not being able to contact the practice via a communication method suitable for them.
• Finding waiting areas incredibly difficult environments – increasing anxiety prior to an appointment. Also anxiety from waiting, either on the phone or in-person, often contributed to communication difficulties at the appointment.
• Not being supported with, or even being refused, reasonable adjustments such as longer appointments, seeing a familiar clinician or a choice of appointment type.
• Experiencing a lack of kindness, patience and understanding from both clinical and non-clinical staff, meaning that respondents felt rushed or not safe to express their needs.
• A lack of awareness and knowledge of autism from clinical staff, meaning respondents felt misunderstood and the care they received was not suitable or appropriate.

What happens next?

Autistic people are less likely to identify and seek help for health problems, meaning they often present late with healthcare needs. Further to this, poor or inconsistent understanding of autism amongst healthcare staff can mean that signs and symptoms of illness are missed and autistic people are more likely to have to use emergency services when a crisis point has been reached.

Autistic people can also have different responses to pain and difficulty identifying emotions. As such, diagnosing physical and mental health problems in autistic people can be complicated, particularly when there is a broad range of co-occurring conditions.

To address the issues raised, we have recommended:

• Autism Health Checks - continue to pilot these across Hertfordshire and ask autistic people what works well, what could be better and what checks should be included.
• Identification – Implement a ‘digital flag’ for autistic people on their patient records to indicate their eligibility for reasonable adjustments and so GPs are aware of the diagnosis.
• Reasonable adjustments - Ensure all GP Practices are proactive in offering reasonable adjustments and making autistic patients aware of their right to ask for them. Any support requested must be implemented and not denied.
• Communication – In line with the Accessible Information Standards (2016), clinicians should ensure they are communicating with autistic people in a way that is accessible to them and providing information in a range of formats.
• Flexibility of appointments - take into account individual needs and preferences and ensure there is more than one way to book an appointment.
• Training and awareness – provide autism and neurodivergence awareness training for all clinical and non-clinical staff in GP practices. Clinical staff should take a holistic approach toward patients, examining both their physical health as well as their emotional wellbeing.