Patient waited more than four years for diagnosis of neurodevelopmental disorder

Ministers have been warned about “harmful” long waits for diagnoses with neurodevelopmental disorders as new figures showed one patient waited more than four years to have their condition confirmed.

Data obtained using Freedom of Information showed a patient in NHS Ayrshire and Arran waited 1,518 days – about four years and one month – to have a diagnosis confirmed.

The figures, obtained by the Scottish Liberal Democrats, also showed a patient in the same health board area waited 1,293 days – more than three-and-a-half years – for a diagnosis of autism, one of the main types of neurodevelopmental disorder.

The data also showed an NHS Tayside patient had to wait 1,323 days to be diagnosed with a neurodevelopmental disorder.

As well as autism, such disorders can include communication disorders, attention-deficit/hyperactivity disorder (ADHD) and neurodevelopmental motor disorders, including tic disorders.

Raising the issue on world autism awareness day, Scottish Liberal Democrat leader Alex Cole-Hamilton said: “For parents and children waiting on a diagnosis to open the door to support services, these revelations will be depressingly familiar.”

He said that “inordinate waits” for diagnosis could be “particularly harmful for children with autism and neurodevelopmental concerns”.

Cole-Hamilton added that waiting “delays a diagnosis that will be key to making sure they get the help they need in other aspects of their lives”.

Scottish Liberal Democrats have “repeatedly called for better support”, Cole-Hamilton said, as he urged Health Secretary Neil Gray to “act to ensure that all those waiting get the help they need”.

His comments came as the Scottish Children’s Services Coalition (SCSC) called for greater resources to be provided to support children and young people with additional support needs (ASN), such as autism, dyslexia and mental health problems.

The SCSC said that spending per pupil on additional support for learning had fallen from £5,698 in 2012-13 to £3,764 in 2022-23 – a drop of just over a third (33.9%)

It comes as the number of ASN pupils has more than doubled between 2021 and 2022, going from 118,011 youngsters to 241,639 – with students with additional needs now making up more than a third (34.2%) of school pupils.

The SCSC said that over the same period the number of full-time equivalent ASN teachers had fallen from 3,390 to 2,844, a decrease of 16.1%.

An SCSC spokesperson said: “It is devastating to note cuts in spending supporting those with ASN and we would urge the Scottish Government to adequately resource the provision of the likes of specialist teachers, educational psychologists and classroom assistants.

“We are facing a lost generation of children with ASN and it is vital that they get the care and support they need, when they need it, especially given the impacts of the Covid-19 and cost-of-living crisis.

“This is also key if we are to genuinely close the educational attainment gap, as we know that those with ASN are disproportionately drawn from poorer neighbourhoods.”

The spokesperson warned Scotland was experiencing a “mental health emergency”, with schools suffering from “dramatic increases in classroom disruption” caused in part by “increased levels of social, emotional and behavioural difficulties post-lockdown”.

The SCSC said: “The Scottish Government and local authorities must work together to provide adequately resourced support across Scotland for those children and young people with ASN, representing some of the most vulnerable individuals in our society.”

A Scottish Government spokesperson said: “Spending on additional support for learning reached a record high of £926m in 2022-23.

“The latest statistics also show that our continued investment of £15m per year has supported the increase of FTE pupil support staff by 725 (4.4%), bringing the total number of support staff in Scotland in 2023 to 17,330 – the highest recorded level.

“We have also continued to invest £11m to directly support pupils with complex additional support needs.

“We are working with partners to enhance neurodevelopmental support before and after autism diagnosis, including prioritising investment, and recognise that long waits are unacceptable.

“The National Neurodevelopmental Specification for Children and Young People makes clear that support should be put in place to meet the child or young person’s requirements when they need it, rather than be dependent on a formal diagnosis.”