Tens of thousands of children in the UK have been waiting more than a year for NHS community care, including hearing services, speech therapy and disability support, the BBC has revealed.

The analysis found that of the 300,000 children on waiting lists, a quarter have been waiting for more than 12 months.

NHS leaders and doctors say the delays are “catastrophic” and are having a negative impact on health as well as development, and are calling for these long waiting times to be treated with the same priority as hospitals.

The government says long waiting times are unacceptable, but the 10-year plan says increased investment in community services will improve access to care.

“Waiting list after waiting list”

Tiya Curry’s 6-year-old son, Arun, struggled to get the support he needed.

He has had difficulty speaking since he was a toddler. But when Tiya, 46, from London, tried to seek help, she said she was faced with “one waiting list after another”.

“I was tearing my hair out in total darkness. It was really stressful.”

After two years of waiting, Tiya and her husband felt they had no choice but to use £4,000 of their savings to privately pay for speech therapy and a formal diagnosis, which revealed that Arun had Developmental Language Disorder (DLD).

DLD is a diagnosis given to children who have significant and ongoing difficulties understanding or using spoken language.

“It really hurts that there are so many people who need access to a speech therapist but can’t because of long waiting lists and lack of affordability,” Tiya said.

While Arun’s progress has improved significantly with speech therapy and appropriate school support, Tiya said the need for better early intervention and resources for children is critical.

“We know how stretched NHS services are, but children should be prioritized because they are still developing and need that support now, not years from now,” she said.

harmful wait

Community waiting conditions for under-18s have worsened over the past three years.

Since the start of 2023, the number of children waiting for more than a year has increased sixfold, with more than 77,500 people now in England.

It is not common for adults to wait up to a year in the community, with only 1% of adults waiting compared to 26% of children.

The figures only cover the UK, but the Royal College of Paediatrics and Children’s Health (RCPCH) said other parts of the country were also reporting longer-than-usual wait times.

Many of the children facing long waits have complex needs, such as learning disabilities or physical disabilities. Among the young children waiting are some who need to be evaluated for autism or ADHD. For older children, mental health services tend to take the lead.

Elliott Howard-Jones, chairman of the Robinson Group, which represents NHS services in the specialist community, said he was deeply concerned about how the delays were impacting on children.

“Having this support is fundamental to their development process, which is why latency is so detrimental.”

To illustrate this point, he gave the example of a child who has hearing loss, which leaves him confused and apathetic.

“For adults, waiting is annoying, painful, and difficult. But for children, waiting means that their peers are moving on while they are not. They can only fall behind, never catch up.”

Mr Howard-Jones said there needed to be more emphasis and investment in community services, similar to what was already happening with hospital care. Tackling the backlog is at the heart of Labour’s manifesto, with NHS trusts needing extra funding to make progress.

Chronic lack of investment

His warning is echoed by other NHS leaders.

Richard Kirby, chairman of the NHS Confederation and Community Network of NHS Providers, said demand was outstripping supply capacity.

“Without further support, children will continue to wait even longer and fall further behind. This is a situation none of us should accept.”

RCPCH’s Dr Ronnie Chan added: “Chronic under-investment and lack of focus on children’s health and services has left staff unable to meet growing demands.”

“Long waiting times are unacceptable for any patient, but for children and young people, waiting times can be deadly.

“Many treatments need to be done by a certain age or developmental stage to prevent long-term complications, and for many children, such long waiting times mean a critical opportunity to intervene in time is missed.”

Kate Lawson, head of policy at disability charity Sense, said there were many “heartbreaking stories” of families struggling to access the care and treatment they need, with a significant number having to pay for it privately.

“It is vital that the government tackles this issue to give all children the best start in life,” she added.

The Department of Health and Human Services agreed that the wait times were unacceptable.

The department said it was taking “decisive action” by introducing new targets to help community health services see patients within 18 weeks. This is exactly what hospitals expect.

The spokesperson added that there would be further investment in community services under the government’s NHS 10-year plan.

“Our vision for community health is one that brings care closer to infants, children and young people by bringing more staff, better digital tools and services together to ensure children get the right support in the right place,” she said.