Children’s early development at risk with year-long NHS waits

Tens of thousands of children in England have spent more than a year waiting for community care from the NHS, such as hearing, speech and disability services, the BBC has found.

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

NHS leaders and doctors say the delays are “catastrophic”, harming not only their health but also their development – ​​and are calling for the same priority to be given to tackling these long waits as that given to hospital backlogs.

The government says long waits are unacceptable, but as part of its 10-year plan, greater investment in community services will improve access to care.

Tiya Currie’s six-year-old son Arun struggled to get the support he needed.

He has had speech difficulties since he was little. But when Tiya, 46, from London, tried to get help, she found herself faced with “waiting lists after waiting lists”, she said.

“I was completely in the dark and pulling my hair out. 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 Arun had developmental language disorder (DLD).

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

Tiya said: “It absolutely saddens me that there are so many people who need access to speech therapists, but are unable to do so due to long waiting lists and the fact that it is not affordable. »

Arun’s progress has improved significantly thanks to speech therapy and appropriate academic support, but Tiya said the need for better early intervention and resources for children is essential.

“I know how extensive NHS services are, but children should have priority because they are still developing and they need this support now, not years from now,” she said.

Community expectations 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 six-fold, with more than 77,500 in England in this situation.

Year-long waits for adults in the community are not common, with only 1% of them waiting that long, compared to 26% of children.

Although the figures only cover England, the Royal College of Paediatrics and Child Health (RCPCH) says longer than usual waits are also being reported elsewhere in the UK.

Many children facing long waits have complex needs, such as learning and physical disabilities. Some of the young children waiting will include those who will need evaluations for autism or ADHD. For older children, mental health services tend to take the lead.

Elliot Howard-Jones, chairman of the Robinson Group, which represents specialist NHS community services, said he was very concerned about how the delays were affecting children.

“Getting this support is fundamental to their development journey – which is why expectations are so damaging.”

To illustrate this point, he gave the example of a child who has difficulty with hearing, which makes him disruptive and disengaged.

“For an adult, waiting is boring, painful and difficult. But for a child, waiting means that your peer group is moving forward while you are not. You fall behind and never catch up.”

Howard-Jones said there needed to be greater focus and investment in community services, similar to what has already happened with hospital treatment – tackling the backlog was at the heart of Labor’s manifesto and NHS trusts are receiving extra funding to make progress.

His warnings were echoed by other senior NHS leaders.

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

“Without additional help, children will continue to wait longer and fall further behind – this is something none of us should accept. »

And Dr Ronny Cheung, from RCPCH, added: “Chronic underinvestment and lack of focus on children’s health and services means staff are unable to meet growing demand.

“Long waits are unacceptable for any patient, but for children and young people, waits can be catastrophic.

“Many treatments need to be administered according to a specific age or developmental stage to avoid long-term complications, and for many children, these long waits mean we miss crucial opportunities to intervene in time.”

Kate Lawson, head of policy at disability charity Sense, said there were many “heartbreaking stories” of families struggling to access essential care and therapy, and a significant number had to resort to private payment.

“It is vital that the Government tackles this issue to give every child the best start in life,” she added.

The Department of Health and Social Care acknowledged that the expectations were unacceptable.

He said he was taking “firm action” by introducing a new target for community health services to aim to see patients within 18 weeks – the same thing hospitals are supposed to do.

And a spokeswoman added that as part of the government’s 10-year NHS plan there would be more investment in community services.

“Our vision for neighborhood health will bring care for babies, children and young people closer together, with more staff, better digital tools and services working together to ensure children receive the right support in the right place,” she said.