ADHD services shutting door to new NHS patients as demand soars, BBC finds

Specialist ADHD services for adults in England are stopping taking on new patients as they struggle to cope with demand, a BBC investigation has found.

The BBC has identified 15 local areas where waiting lists have been closed and a further 31 where stricter criteria have been introduced, making it harder to access support.

Reacting to our investigation, Professor Anita Thapar, chair of the NHS England ADHD working group, said the findings were “worrying”, adding that there were “huge risks” for patients.

It comes after it published its report on the state of ADHD services on Thursday, which recommended a review of how people are supported.

ADHD—attention deficit hyperactivity disorder—affects brain function and can cause people to act impulsively and be easily distracted.

The task force's report says the disease is underdiagnosed and undertreated and calls for health, education and the criminal justice system to work more together to identify people with ADHD.

It says this will require staff to undergo training and local NHS staff such as GPs and pharmacists to become more involved in supporting people with ADHD. Currently, specialized services take responsibility for this.

It is believed to affect 5% of children and 3-4% of adults.

A diagnosis and treatment, which may include medication and psychological therapy, can be life-changing, experts say.

But NHS data already shows average wait time eight years for adults if someone is on the waiting list.

And now a BBC investigation has revealed that a significant number of places are restricting access to these waiting lists.

The BBC received information from 59 services, the majority of those providing support in England, following Freedom of Information requests.

The answers showed:

• 15 trusts have stopped accepting applications completely or partially – some cover large areas and have closed their waiting lists in only some locations.
• In Cheshire, the adult service has been closed to new patients since 2019.
• Of the remaining trusts, 31 rationed care, introducing exceptions for example based on age or severity of illness.
• In one region, the Coventry and Warwickshire Integrated Care Council is being threatened with legal action for limiting adult assessments to people under 25.

In some areas, people referred for help by GPs can use what's known as the “right of choice” to switch to a different NHS list or ask for private support, which will provide an alternative option if their local NHS has stopped accepting new referrals.

The BBC investigation also identified examples of areas of innovation. One of them is Surrey, where a local service with a waiting list of 11,000 adults is testing a scheme to train a group of private GPs to carry out tests and treatments.

Louise Nichols, who suspects she has ADHD, is just one of many people affected by rationing.

Even when she was in elementary school, she found it difficult. She was diagnosed with school phobia and was homeschooled for a time, and has since found it difficult to stay employed.

The mother-of-one says it's frustrating to see everyone else coping while she finds everyday life difficult.

“I need a way to help me function to the best of my abilities. Whether it be medication or support,” she says.

“I hope to get a part-time job. I want to be part of my community.”

The 45-year-old lives in Derbyshire, but because the area does not have its own service, she was on the waiting list for two years at the neighboring Sheffield Trust.

But it was removed from the list in October last year because Sheffield stopped assessing people living outside its borders as it struggled to meet demand. More than 3,700 people work in the same position in the district.

She said it was very disappointing. “I can't understand why the National Health Service doesn't cover the whole country.”

Professor Thapar said the problems faced by people like Louise were unacceptable and highlighted the “historic neglect” of ADHD by the NHS.

She called the BBC's findings “worrying”, adding: “There are huge risks. This is not a trivial condition.”

With the right support, people with ADHD can thrive, she said, but there is a “high, very high risk” that without such support people's circumstances could become much more difficult.

This can include mental health issues, substance abuse, unemployment and problems with the criminal justice system, she said.

And Dr Jessica Eccles, from the Royal College of Psychiatrists, said services were facing difficult decisions because “growing demand is outpacing capacity” in many parts of the country.

“There are unacceptably long waiting lists,” she added.

Patients who have received support say it has changed their lives.

Sam Stone is an example of this, but he had to fight to get help.

The 33-year-old, who lives near Gloucester, paid for a private diagnosis through his health insurance but his GP did not accept it and he had to go back on the NHS waiting list to get confirmation.

He is unhappy with how complex the system is. “Honestly, it's almost hard for me to think of it as a system because it feels like there's such a cacophony of routes that it feels like you're constantly trying to hack the system.”

Sam said the diagnosis was life-changing. He has been on and off antidepressants since he was 16, but now takes medication for ADHD.

He said it was as if a cloud hanging over him had disappeared.

“It’s huge, it’s huge,” Sam says.

Additional reporting by Elena Bailey and data analysis by Rob England.