Referral and assessment 'lottery’ for autistic patients

A freedom of information request from the Liberal Democrats has revealed that children and adults in England can face a wait of more than two years for an autism assessment.

The research, conducted by Liberal Democrat former Health Minister Norman Lamb, highlights a postcode lottery in waiting times for a first appointment, with many parts of England falling woefully short of the three-month target in 2016-17. The The National Autistic Society has labelled the findings as ‘shocking’ and claim that it should ‘act as a wake-up call for the government and local services’.

People suspected of being autistic should start their diagnostic assessment within three months of being referred to the autism team, according to national guidelines. The data shows that Berkshire Healthcare NHS Foundation Trust reported that children faced a median wait of 574 days for a first appointment, with long median waiting times for a first child appointment also reported in areas such as Northern, Eastern and Western Devon CCG (271 days in the Virgin Care CAMHS service) and Cumbria Partnership NHS Foundation Trust (253 days).

In other areas, no adults in South Gloucestershire CCG, the Isle of Wight CCG or Cornwall Partnership NHS Foundation Trust were assessed within three months of referral in 2016/17.

There is currently no benchmark for how long it should take to finally get an autism diagnosis. Delays in diagnosing autism often mean that many autistic people do not receive the educational, health and social support they need, which can cause significant harm to their life chances.

Norman Lamb said: “These scandalous waiting times are happening despite clear evidence that early diagnosis and intervention can make a massive difference to people’s life chances. In many cases, a diagnosis is necessary for children to access vital support, including Education, Health and Care Plans.

“We know there can be complex cases which require several follow-up appointments with different specialists, but there is no excuse for the widespread delays we are seeing all around the country. Getting the diagnosis is critical thing so that autistic people get the support and assistance they need. The government has an obligation to set a maximum waiting time standard from referral to a final diagnosis of autism, as well as ensuring that data is published for each mental health trust and CCG so that local areas can be held to account for their performance against this target.”

The National Autistic Society say that the full scale of the problem will not be known until April 2019, when the NHS publishes waiting times for every area for the first time.

Mark Lever, chief executive of the National Autistic Society, said: "It's completely unacceptable for autistic people and families to be waiting many months, even years, for a diagnosis - just because of where they live. This research highlights the scale of the crisis and the alarming variation across the country. Long waits are traumatic and pushing people into anxiety and depression. Autistic people and families are desperate for help and are breaking down under the strain.

"These shocking findings should act as a wake-up call for the government and for local areas, which must act and develop better or new services. The government has taken an important first step by starting to collect waiting times. But unless each area is held to account for bringing down their own waiting times, we won’t see the vital improvements that autistic people and their families desperately need.”