Families 'living in limbo' on Send waiting lists

A mother has said her son's two-and-a-half year wait for an autism assessment has been like "living in limbo" with "no light at the end of the tunnel".

Shannon, 37, from Northampton, said her son, Cassian, eight, was put on the waiting list in August 2022.

Since then, the county's average waiting time for assessments of autism and attention deficit hyperactivity disorder (ADHD) has almost doubled.

The Northamptonshire Healthcare NHS Foundation Trust (NHFT) said it had seen a large number of referrals following the Covid-19 pandemic, which had led to an increase in wait times.

It added that it was working with system partners to try to increase its capacity for assessments and reduce waits.

Cassian received a diagnosis for ADHD in November, but is still awaiting an assessment for autism.

Shannon said that made it harder for schools and organisations to understand his needs.

"Teachers don't show the same level of understanding and empathy without that diagnosis. Unfortunately, in a lot of cases he wasn't taken seriously," she told the Local Democracy Reporting Service.

"You just feel like you're living in limbo all the time.

"You get letters with no timeline, no date, no real indication of anything that's going to happen."

According to a Freedom of Information request, in 2024 people were waiting an average of 530 days for an assessment - almost a year and a half.

This compares with 287 days in 2022.

NHFT reported that 4,099 children were waiting for assessments in March 2025, up from 2,497 children just 18 months earlier.

Shannon said it felt like a "massive victory" when Cassian received his ADHD results.

She said: "The sooner you have that diagnosis, the sooner you can put these therapies in place that help them get to where they should be.

"It feels never-ending as a Send parent (special educational needs and disabilities) – that there is no light at the end of the tunnel."

Northamptonshire mum Sam, 46, said she had to fight for all three of her children to get Send assessments and specialist provision, but that the wait for her youngest daughter, Eva-Rose, 10, had been the most difficult.

"Just some transparency is needed. To this day, I have no idea where my child is on that list," Sam said.

She said Eva-Rose had been waiting for more than two years on the ADHD and autism pathway, making it harder to access potential support such as further speech and language therapy.

Ms Flitton "actively sought out" a "Right to Choose pathway", which allows patients facing long waiting times to go to private clinics.

Eva-Rose should get an assessment in the next 12 months.

She said: "If I didn't act, we would still be sat on a non-existent, no-outlook NHS waitlist.

"My children get one childhood and that should not include watching their mother on her knees begging for scraps of support," she added.

An NHFT spokesperson said the increase in referrals and waiting times was "in line with national trends".

"We recognise the challenge this can have for families and are working with system partners to consider how capacity for assessments can be increased and waiting times reduced," they said.

The trust said support was provided to young people and families on the waiting list.

"The feedback from families on this support has been predominantly positive. Unfortunately, we are not able to provide regular updates on individual children's place on the waitlist, as the team's capacity is focused on carrying out assessments."

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