'The worst data ever uncovered': ITV News reveals up to decade long wait for ADHD referrals

ITV News can reveal the alarmingly long waits for ADHD referrals on the NHS, with some as long as a decade for adults as Stacey Foster reports

By ITV News' Stacey Foster and Sarika Gandhi

"We knew it was bad, we didn’t know it was this bad."

ITV News and ADHD UK have conducted the most comprehensive review of NHS wait times for an ADHD referral. The charity says it’s "the worst data ever uncovered."

Paola, Imogen, and Cherelle may be from different parts of the UK and different ages, but they have more in common than a suspected ADHD diagnosis - they're stuck waiting for years to find out whether they have the condition.

ADHD, attention deficit hyperactivity disorder, is a condition that affects behavior and concentration. It’s thought to affect 6% of the current population.

What do our findings show?

Our findings are stark and reflect a clear postcode lottery. The average wait time for a referral is three years in the UK.

The longest waits for children are in Belfast - where it can be up to five years. 

Adults in Herefordshire and Worcestershire wait more than ten years to get any answers.

In response to our joint findings, ADHD UK have launched a postcode checker where you can find your wait times for an ADHD referral in your area.

In York, they introduced a crisis pilot in March to try to tackle the backlog, which now means you cannot be referred unless you meet urgent criteria.

We spoke to single mum-of-three, Cherelle from York, who visited her GP last year to be referred for an ADHD diagnosis. She told us this pilot "set her up to fail".

"It makes me feel sad," Cherelle told ITV News.

"It makes me feel sad because there’s people in worse situations, and people who are experiencing these things are told it’s not enough... They have to feel like that every day and question themselves with no support."

Cherelle isn’t even on a waiting list for an assessment after waiting 50 weeks (about 11 and a half months) for an appointment with a clinician to decide whether she can go on the waiting list.

Cherelle said not being able to get an ADHD diagnosis is making her 'feel like a failure'. Credit: ITV News

It’s important to note how these wait times aren’t reflective of how many patients are left waiting.

Many Healthcare Boards didn’t reply to our Freedom of Information Request. Only 21% of healthcare boards knew their data with the vast majority unable to indicate how long their wait list is or how many people are waiting on it.

Our Freedom of Information Request showed around 26,000 people in the UK waiting for an ADHD assessment, but the charity ADHD UK says the number should be around 110,000 patients currently waiting for an ADHD assessment.

Henry Shelford, CEO and co-founder of ADHD UK told us these findings send "a chill down my bones."

'This isn't going away, this is a fundamental need,' CEO and co-founder of ADHD UK Henry Shelford said

What are the signs and symptoms of ADHD?

What comes to mind first for many when they think of ADHD is hyper and excited children. However, focus, concentration, and frustration are common indicators.

ADHD can also have more masked signs such as chattiness, forgetfulness, or feeling overwhelmed.

It’s important to stress that the symptoms of ADHD present differently in every patient and differ between males and females. Girls are less likely to show disruptive behaviour, which means girls who have ADHD may not always be diagnosed. 

Why are the wait times so long?

In an ADHD Clinic in South London, we spent the day there and saw their phone lines ring off the hook with patients calling to know when they will finally get an appointment. The clinic is seeing anywhere from 250 to 300 referrals a month, but why is this?

ADHD is a relatively new condition.

In 2000, childhood ADHD was first recognised by NICE (National Institute for Health and Care Excellence), and later in 2008, it recognises the condition in adults.

It’s these new services that have been put under increased pressure as they haven’t grown to the demand of patients being referred.

There’s also a wider understanding of ADHD which is causing more people to reach out to their GP for a referral, inundating a system that is already at capacity for many NHS Trusts around the country.

Dr Khurram Sadiq is the ADHD Clinical Lead at the NHS Oxleas Foundation Trust. They are actively trying to bring down their wait times but told us the services for ADHD are still designed to cater for a small number of patients like when they were introduced a decade ago.

Both ADHD UK and Dr Sadiq say the current system doesn’t work and needs to change drastically and urgently.

'All the adult ADHD services, they were not there a decade ago,' Dr Sadiq told ITV News

The cost of an ADHD diagnosis shouldn’t be overlooked.

Imogen is seven and since she was three, she has been asking for help for a suspected ADHD diagnosis. She could be in secondary school by the time she finally gets an answer.

Until then, she will go through the education system unable to get any extra support and help until she gets an official diagnosis.

Imogen’s mother, Harriet told us the crisis point for the family was when "Imogen was saying she didn’t want to be here anymore and that she hated herself."

Harriet explained to us that she went back to the GP after her daughter was experiencing what she would call suicidal thoughts. She was put on medication by her GP rather than referring or helping her daughter.

"I mean, it took us three years to get on the waiting list, then another three years to get seen," Harriet said.

"So who knows, maybe another three years, maybe we look at it in nine years. By the time she's got a diagnosis, I really don't know.

"And we've got nothing to benchmark it, because I think everybody's in the same situation. Everybody's waiting and nobody knows how long it's going to be."

Paola from North Wales is 53 and runs a Bubble Company and has just started her long wait.

She’s been told it could be at least two and a half years before she finds out whether she has ADHD or not.

Paola spent her childhood struggling with her symptoms and now is finding it’s impacting her business. It was her children who first told her she could have ADHD and pushed her to seek help from a GP.

Sitting in her home chatting with her son Ziggy about what a diagnosis would mean for the family, it was clear how Paola was living her life waiting for an answer - not knowing when she will get it.

"I think I just get on with it, but then it's kind of niggling in the back," Paola said.

"I go into these big meeting or as change things at work, I say this is something I need to talk about, but I can't because there is nothing to talk about yet."

It’s clear how many patients around the UK are prepared and willing to wait for years to get an ADHD referral, to get answers so they can finally get the help they are desperately in need of.

We put our findings to the Health Departments of Nations around the UK and were assured of their commitment in helping patients.

A Scottish government spokesperson told us: "There is increasing awareness of ADHD and a resulting rise in the number of people seeking help and support. The Scottish government has provided £650,000 for adult neurodevelopmental pathway trials, following a feasibility study to investigate how a pathway for ADHD would work."

A Department of Health and Social Care spokesperson said: "We know how vital it is to have timely diagnoses for ADHD, and we are committed to reducing diagnosis delays and improving access to support."

A Welsh government spokesperson said: "We’re investing in improving access to assessment, and pre and post-diagnosis support for neurodivergent people, including ADHD. We are currently piloting an expansion of the 24-hour C.A.L.L helpline to offer support to neurodivergent individuals and their families."

A spokesperson for Northern Ireland said: "The department of health is aware that ADHD provision has grown organically across health and social care trusts in response to population demand and expertise within HSC teams.

"While this has meant a level of provision is available, it is recognised that this has also led to a gap between what can be provided by trusts in terms of demand and the level of prevalence of ADHD, leading to individuals waiting for assessment and support."

For help and support on ADHD or if you have been affected by this report, you can contact the charity ADHD UK on their website.

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