Children at risk of suicide and self-harm amid neurodiversity diagnosis delay

Dale Spridgeon, local democracy reporter

Children are at risk of suicide and self-harming a north Wales an MS warns amid NHS neurodiversity diagnoses delays.

Dwyfor Meirionnydd MS Mabon ap Gwynfor says families are reaching “crisis point” with parents being “left in tears”.

His stark warning to the Welsh Government and Betsi Cadwaladr University Health Board is over “unacceptable and damaging” hold ups in diagnosing youngsters with neurodiversity conditions such as autism and ADHD.

He says some children in North Wales wait up to four years for an assessment which is having “a profound impact” on children.

He raised the matter with the First Minister Eluned Morgan.

The MS cites figures from Sept, 2024 showing that 20,770 children were waiting for a neuro-developmental assessment in Wales.

He says projections suggest the number could rise to between 41,000 and 61,000 by March, 2027.

In the BCUHB area, waiting times for autism diagnosis in rural areas have reportedly reached up to 46 months (four years).

Waiting list

A Freedom of Information request seen by Mr ap Gwynfor showed that 7,154 children are on the neurodiversity waiting list across the BCUHB area with only five clinicians carrying our assessments in the northwest.

Some 78 assessments were carried out in the northwest between April 25 – March 25, compared to 241 in the east for the same period.

In questions to the First Minister, the Plaid Cymru MS, Mr ap Gwynfor, said:

“I have parents coming to my surgeries in tears because their children are self-harming or have died by suicide – children as young as eleven years old,” he said.

“Data from North Wales shows a list of over seven thousand children waiting for a diagnosis, with the data showing that only 40 assessments are carried out each month in the north.

This means it will take 15, yes fifteen years to go through the waiting list. Does the First Minister think this is acceptable?’

“It is not just statistics, they are real children, real families, and real lives being held back.

“Parents in Dwyfor Meirionnydd are at breaking point. Some are having to go private just to get the diagnosis their children desperately need”.

‘Unjust’

He felt this was creating a two-tier system that was “fundamentally unjust”.

“Local parent feel utterly abandoned, forced to watch their children fall behind in school, suffer with anxiety, and lose confidence, all because the formal diagnosis they need is years away.

“In extreme cases, children are self-harming while waiting for a diagnosis. These are not isolated cases – they are a warning that the system is in crisis.

“No family should have to watch their child spiral into despair because the help they need is locked behind years of waiting.

“Families in rural communities like Dwyfor Meirionnydd face even greater barriers.

“Limited access to services, long travel distances, and patchy support mean that children here are often waiting the longest for assessments”.

“The Welsh Government must get to grips with this crisis. Betsi Cadwaladr Health Board has a duty to act swiftly and transparently.”

Surged

The First Minister Eluned Morgan stated: “Demand for neurodiversity assessments has surged in all parts of the UK, but here in Wales we’re taking action to ensure that families get the help that they need faster.

“We’ve already ended all four-year waits for neurodevelopmental assessments for children, and every health board now has a clear plan in place to eliminate three-year waits by March 2026.

“In north Wales, we’ve given Betsi Cadwaladr an extra £2.7 million to deliver around 1,700 additional assessments this year, and they’re on track to do just that”.

The MS cites a parent from Llanuwchllyn, who has an 11-year-old son awaiting a neurodiversity assessment and has waited three years for a neurodiversity assessment, says the delay is “making his condition worse”.

“He suffers from extreme anxiety and has heartbreakingly told us he doesn’t want to live any more because he can’t cope.

“We couldn’t wait any longer – we had to pay privately just to get an assessment. That’s not a choice any parent should have to make.

“Families like mine deserve honesty, urgency, and compassion – and above all, equal access to diagnosis and support”.

Nearly doubled

Nathan Crimes, head of children’s nursing for the west integrated health community, said: “Requests for neurodevelopmental assessments have nearly doubled compared to pre Covid-19 pandemic referrals.

“While the increased awareness around children’s neurodiversity issues is to be welcomed, it is a challenge to meet demand for requested assessments.

“We are also seeing children’s needs becoming more complex, which adds to the time it takes clinicians to understand and respond to a child’s needs.

“This is an issue which affects all health boards. Therefore, it’s one of national concern and a key priority.

“Pilot programmes around managing this case-load resulted in a 19% increase in assessments completed, as well as a reduction in the number of inappropriate referrals made to the service.

“We welcome the extra funding of £5.6m the Welsh Government has made available in this financial year to help resource ND assessments, of which we received £2.7m.

“With the learning from the pilot programmes now in place and the additional funding, we are confident the wait times will reduce.

“We understand those waits are still longer than parents or children would wish for and share those concerns.

“While waiting for an assessment, there are a number of services and resources families can access free of charge, with no need to have been assessed. Links to these can be accessed via the health board’s website.

He urged parents of children waiting for an assessment to take advantage of the help and advice available by visiting: Neurodevelopmental Service – Betsi Cadwaladr University Health Board.”

If you are affected by the issues raised in this story please contact the Samaritans helpline on 116 123. This number is free to call. You can also call Mind support line in Wales on 0300 102 1234.