The condition where patients are being told to wait seven YEARS for a diagnosis in Greater Manchester

The wait for ADHD tests and diagnoses has risen by years in Greater Manchester, the Manchester Evening News can reveal.

Demand has risen so much in recent months for Trafford Extended Service that the waiting list has shot up, with one man being told his wait for further ADHD investigation has grown from one year to seven years over just a 12 month period. Trafford Extended Service (TES) is a specialist team providing autism diagnosis, and diagnosis, pharmacological intervention and focused support for adults with ADHD, as well as people changing over from child and adolescent mental health services (CAMHS).

TES is run by Greater Manchester Mental Health Trust (GMMH). The trust has been frank that its ADHD services 'are receiving a very high number of referrals which far exceed the number of people we are able to support'. The M.E.N. understands the wait for these services are now years-long after a major uptick in the number of people needing help.

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Waiting lists for ADHD tests and diagnoses are rising across the country. Leaders of ADHD UK, a major charity campaigning about the condition, say there are 2.6 million people with ADHD in the UK, waiting lists for adults range from 12 weeks to 10.5 years and those for children from five weeks to five years.

The World Health Organisation defines ADHD as being a persistent pattern of inattention and/or hyperactivity-impulsivity that has a direct negative impact on academic, occupational, or social functioning. The National Institute for Health and Care Excellence (NICE) estimates one in twenty children (five per cent) and one in 29 adults (three to four per cent) have the condition - but the real figure could be much higher given the number of people awaiting assessment.

ADHD was the second most viewed health condition on the NHS website in 2023, after Covid-19, according to new figures compiled by NHS England, with 4.3 million page views over the course of the year. The rise in adults and children being referred and diagnosed with ADHD has become so pronounced that, at the end of March, the NHS launched a special taskforce to investigate the causes of increases in demand, capacity, medication supply issues, variation in services and a lack of reliable data.

Across Greater Manchester, waits for help with ADHD are now regularly years-long, the M.E.N. has learned. And one south Manchester dad, in his early 30s, says he was left shocked after being told the wait for ADHD investigations had risen from one year to seven years - after already waiting 12 months before he chased the tests for a diagnosis from Trafford Extended Service.

The dad, who wishes to remain anonymous, was diagnosed with autism spectrum disorder around four years ago, having ‘never even considered having this condition before’.“That started my not very good journey with this part of the NHS," he told the M.E.N.

“It was on my mind to get looked at for ADHD given some of my symptoms. It’s been a struggle, not having any follow-up care from the NHS or GP.

"I requested further testing for ADHD because I believe I might have either been misdiagnosed or not been fully diagnosed. I was told to send a letter off and that there would be a 12 month waiting list.

"I had been bringing it up whenever I'd go see my GP over the last 12 months for any update, but I’d had nothing. I feel like I’ve been brushed aside, they don’t seem to want to know."

A few months into his wait, the family moved into the Trafford Extended Service catchment area and he called TES to ask where he was in the queue.

“I phoned Trafford Extended Service because I was getting a bit worried because my condition wasn’t getting any better and I’ve got no access to any medications for my condition – the GP can’t prescribe them, a psychologist has to," he said. “I was told that I was definitely on the waiting list, but it was still around a 12-14 month wait and that I should give them a ring back in six months. So that’s what I did."

Six months passed and in March, the dad called TES again. “When I called back a few days ago, the lady on the phone sounded upset and disappointed to tell me that due to funding cuts, the waiting list had gone up from 12 months to seven years within the space of 12 months, with an exponentially increasing number of people wanting resources," he said.

“She said… ‘we’ve not got nearly enough resources to help everybody’. I was then told ‘you could try going private’ – I’ve looked into it but I can’t afford to shell out £2,500, £3,000 on a private diagnosis.

“GPs in the NHS don’t have to accept the diagnosis from a private doctor, so even if I did manage to get a diagnosis I might not be able to access the treatment through the NHS.

“I was told I had the right to choose where I would contact other boroughs and other treatment providers and ask them what their waiting times are, then you submit a form through your GP and ask to be referred to a new place. But I can’t help but feel I shouldn’t have to do that.

“Especially with my condition, it’s not that I’m too anxious, I need support as a vulnerable adult to make the right choice and an informed decision. I can ask to be referred to as many services as I want but there’s no guarantee that I will get anything or there will be a waiting list less than 12 months again."

Greater Manchester Mental Health Trust says funding has not been cut and that it is still receiving the same levels of money, but instead demand has just grown so high that it has far outstripped the capacity of the region's ADHD services. That imbalance is leading to years-long waiting lists, the M.E.N. has learned.

In 2000, childhood ADHD was first recognised by NICE, and later in 2008, it was recognised as a 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, said the ITV and ADHD UK national investigation.

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 rusts around the country, the broadcaster and major charity reported.

Freedom of Information Requests showed around 26,000 people in the UK waiting for an ADHD assessment according to an investigation by ITV and ADHD UK, but there was a significant absence of the data shared by healthcare boards and the charity said the number should be around 110,000 patients currently waiting for an ADHD assessment.

John Foley, Chief Operating Officer at Greater Manchester Mental Health NHS Foundation Trust, said: “Our ADHD services, like many others across the country, are receiving a very high number of referrals which far exceed the number of people we are able to support. Unfortunately, this has resulted in people having to wait to access the service.

“We understand how vital timely diagnosis and treatment is, and we continue to communicate with NHS Greater Manchester, who commission the ADHD services across the region, to highlight this urgent issue and seek a way forward to reduce waiting times and improve the experience of those awaiting assessment.

“There is a range of information and support available to people whilst they wait for an assessment. If you or someone you know is struggling, please don’t hesitate to reach out to your GP, or if you are already awaiting an assessment, contact your ADHD service directly for more information. Our 24/7 mental health crisis helpline is also available free of charge to anyone who needs it on 0800 953 0285.”

The south Manchester dad says that while he waits for answers he faces life-changing symptoms every day, including 'crippling anxiety, struggle making simple decisions like what to eat or drink, what clothes to wear, when to leave the house’. He says 'all this impacts my life massively, a change of plan about what supermarket I’m going to might cause a meltdown and the rest of the day has to be written off’.

"It’s not always visible when you come across someone like me, especially if they’ve been diagnosed later in life and are used to ‘masking’ their symptoms to appear normal to others," the dad added.

Now, he faces being nearly 40 by the time he might get to the top of the waiting list. His primary school-aged daughter is also now undergoing tests for autism spectrum disorder and he fears she faces the same fate of waiting years before getting an answer.

The south Manchester man explained: “It’s scary, the way this is being handled.

“I might be nearly 40 by the time I get this diagnosis, I don’t know if I’m going to be able to make it to 40 with how my condition affects me. It feels like nobody cares or understands.

“I fully appreciate that not everyone can know everything about every condition, but it’s upsetting as an adult, father, partner knowing that I’ve got a condition I have been diagnosed with and potentially got another that I can’t get a diagnosis for.

“It feels like I am stuck on a roundabout and no one is telling me when I’m going to get off.”

NHS chief executive Amanda Pritchard said: “NHS staff across the country are working hard to ensure all patients requiring assessments and further support from ADHD services are seen as promptly as possible.

“We have recognised that that more needs to be done to ensure people can get a timely diagnosis and importantly, that all of their needs are addressed.

“This is a hugely complex piece of work and this taskforce will need to consult a wide range of partner and experts, to understand more about the issues impacting those with ADHD and how service provision can be better joined up to meet people’s needs today and in the future. This is a vital first step in helping us achieve real improvements in the ADHD services that the NHS and the independent sector provides.”