More than 190,000 people could be waiting for an autism assessment by the end of next year, according to a new report from CHS Healthcare, Autism and ADHD: The damaging waits for assessment.
There are currently around 130,000 people waiting for an autism assessment, with eight in 10 (84%) waiting longer than the NHS’ 13-week target, and around half (52%) waiting for more than a year.
The number of people waiting longer than the NHS target has increased by 485% since April 2019, with experts predicting this figure to rise even further over the next year.
The report, written in collaboration with The Brain Charity and The Donaldson Trust, highlights this significant unmet need and the devastating impact of delays and uncertainty on people’s lives.
Why is it so important that autistic people receive a timely autism assessment?
Timely assessments and diagnoses enable autistic individuals to get the support they need, whether it be medical, financial, or educational. A delayed diagnosis may therefore increase the chances of developing poor mental health, something which is particularly worrying considering up to 66% of autistic adults have thought about taking their own life and 35% have had attempted suicide.
Laura Watkins, Chief Executive Officer at The Donaldson Trust, explains that autistic people who are left waiting for a diagnosis may experience “poor sleeping patterns, interrupted learning, disordered eating, social isolation, depression, and suicidal ideation”.
“The impact of delayed diagnosis on the family can also be significant,” Ms Watkins says. “In some situations, extended waiting times can lead to marital breakdown, relationship issues between siblings, and the potential of loss of employment due to competing priorities between parents, their child, and employers. To avoid these devastating life impacts, we must do more to improve both waiting times for diagnosis, as well as post-diagnostic support.”
NHS, third sector and private companies must come together to improve diagnosis waiting times
The authors of the report are now calling on the government and service providers to change trajectory and improve NHS waiting times for both autism and ADHD assessments.
It sets out 10 actionable recommendations that will improve the situation for service users and services. These are as follows:
Simplifying information and increasing transparency
Curbing the sharing of misinformation
Improving access to support for those left waiting
Increasing oversight of ADHD services
Collaboration outside of traditional models to improve accessibility and efficiency
Prioritising innovative solutions that speed up services
Expanding workforce capacity
Improving children and young people’s access to services
Funding further research into ADHD
Removing the gender bias.
Eleanor Norman, Client Partner at CHS Healthcare and former NHS Mental Health Nurse says there now needs to be a “collaborative approach” that sees the NHS, third sector and private companies working together to create assessment pathways that speeds up access to these vital services.
“Without this, the damaging impact on the lives of those who are left in limbo will be enormous,” she said.