ADHD and autism assessment delays 'frustrating'

A mum who has spent five years trying to get her six-year-old daughter assessed for Autistic Spectrum Disorder (ASD) said continuing delays were frustrating and affecting family life.

Nicolle Loughlin, from Cheetham Hill in Manchester, said Amira was added to an assessment waiting list in May through the NHS Right to Choose service, which gives patients in England permission to select their own healthcare provider.

But rising demand for diagnosis and support services has now led to autism and ADHD assessments being paused across Greater Manchester until at least April.

Mrs Loughlin complained she had been left with "no options and no advice", and now feels she may have to pay to have her daughter assessed privately.

NHS Greater Manchester (NHS GM) said the decision to pause assessments affected all new non-urgent cases with NHS Right to Choose providers, and not those already with an appointment.

It stressed this was a temporary measure, to prioritise those with the most urgent clinical needs and those already in the system.

Speaking about Amira, Mrs Loughlin said: "She is behind, and gets excluded... it's very sad.

"It's been frustrating going through rejection and dismissal for five years trying to find some kind of avenue for support for her."

Right to Choose began in 2018 to allow patients to explore alternative providers for some services if waiting times in their own area were too long.

Mrs Loughlin, 33, said she was told last month that "any referral currently going to a provider is unlikely to be seen before April 2026 at the earliest".

Clinical Partners, the provider assigned to Amira, said its agreement with NHS GM included a set number of assessments per year, which had been reached in October.

A spokesperson said: "We cannot comment on the volume of the assessments we will do this year as it is up to the Integrated Care Board (NHS Greater Manchester) to determine when we recommence assessments and how many we might do."

Amira's school has provisions for children with a range of special educational needs - including separate classrooms, sensory activities and one-to-one support.

But for Amira to be able to access this, she must first have a learning support plan in place - which Mrs Loughlin said will only be possible after a formal assessment.

"I have been left with no options and no advice about alternative routes," she said.

"I'm now in a situation whereby I can't justify the private fees but I can't keep going in the situation I'm in with my daughter."

NHS GM said: "Across the country, and here in Greater Manchester, demand for autism and ADHD assessments has risen sharply over recent years.

"The number of children and adults waiting has increased year on year and the rate of referrals continues to exceed available capacity.

"This creates very long waits, which we know are difficult for individuals and families."

It said it was working with providers and partners to develop "a fair and sustainable long-term approach to meet this rising demand".

A spokesperson added: "We are also increasing investment in community-based services, self-help resources, digital solutions, coaching and peer support groups, so that people can access practical help and advice while waiting for assessment or support.

"Patients on existing waiting lists will retain their place and their original referral date. We expect non-urgent appointments to resume when the new financial year begins, subject to budget confirmation.

"We recognise how challenging this situation is for families and are committed to improving the timeliness, quality and accessibility of neurodevelopmental services across Greater Manchester."

Mrs Loughlin said she had been told that, in the "most urgent of cases", there may still be a route.

But she asked: "How do they determine urgency?

"As a family, we've been struggling - it's affected my own mental health."

She said the situation was also affecting Amira's younger brother, who sees her "upset, biting herself, and having tantrums".

"It's quite distressing for him when she kicks the walls and screams cyclically for like half an hour or more a time," said Mrs Loughlin. "He doesn't understand why, he's only three."

Henry Shelford, from the charity ADHD UK, said: "Neurodivergent people in Greater Manchester are being failed.

"The decision to further ration services is just fundamentally wrong."

He added: "It's completely unfair and I don't understand why we - people with ADHD, people with autism - are just treated so differently from others.

"As a group, we are not benefiting from the concerted effort to bring down wait times."

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