ADHD patients 'forced' to pay for medication as NHS GPs refuse shared care with private doctors

• By health reporter Katie Fenton and journalist Emily-Haf James

Wales has the worst rate in the UK of GPs agreeing to share the care of ADHD patients with private doctors, exclusive figures for ITV Cymru Wales have revealed.

ADHD patients who apply for shared care have often sought a private diagnosis due to long NHS waiting times.

Currently, it can take up to 10-and-a-half years to get an ADHD assessment through the NHS, according to ADHD UK.

But once an individual gets that diagnosis and wants to transfer their care to their GP - meaning they would no longer have to pay for treatment - this is often being refused. 

In Wales, just 19% of people who applied for shared care with their GP had it accepted, according to an exclusive ADHD UK survey for ITV Cymru Wales.

That's compared to 29% in Scotland, 38% in Northern Ireland and 58% in England.

Charities and individuals are calling for the Welsh Government to issue new guidance on shared care for ADHD.

Henry Shelford, director and chief executive of ADHD UK, explained that "the application is basically asking for your ADHD to be recognised".

But he described the process of getting one approved as "an absolute disaster" in Wales.

Hannah Heath had her application refused by her GP. She said she was told that her private diagnosis was "insufficient" and an NHS psychiatrist would need to diagnose her.

The third-year Swansea University student first sought out a diagnosis through the NHS. She was seen by a mental health nurse who she claimed told her she couldn't have ADHD as she "wasn't naughty in school".

She said this knocked her confidence because it had taken a lot to make the call and seek help: "In one sentence, he disregarded my whole experience."

Hannah then used some of her student finance to get a private diagnosis, and while she said she couldn't really afford it at the time, she felt strongly that she did have ADHD and needed help.

"Because I didn't have much money, I had to look for the cheapest one. I felt forced to go private."

Without an NHS diagnosis, Hannah continued to pay privately for medication, which cost her around £100 per month.

She also paid for titration appointments with a nurse, costing £25 each, and check-in appointments with a psychiatrist, which costed around £150 each time.

"The costs were accumulating and once I'd started the medication, I saw how much it was helping me, and I felt this panic of losing that then, or not being able to afford it."

Hannah and her private psychiatrist hoped shared care could be an option, however, Hannah said her GP refused this, saying that they do not accept shared care applications. 

"It felt easier to struggle, than to fight them. The whole experience was just awful."

Eventually Hannah was able to get a referral from her GP to the NHS mental health team.

"Because it was a whole new diagnosis, I was so stressed and anxious that they were going to say that I didn't have ADHD."

She claimed the diagnosis took place during a five-minute phone call, describing the whole experience as "such a waste of my time and resources".

"It feels like nobody is listening to you. You're shouting into a void. People and staff need to be trained more about mental health and neurodiversity.

"It affected every area of my life, really. If it would have been a bit more streamlined, it would have helped them and also me."

• Glenn says he's had his shared care application refused by two separate NHS GPs

Glenn Page, from Carmarthen, suffered with mental ill health throughout his twenties.

He visited his GP several times and was prescribed anti-depressants, but said "nothing really seemed to fit or work".

Last year, he had a private ADHD diagnosis, and said he feels very lucky to have been able to attain this through his work. But he still incurred costs, including for medication.

Glenn saw his GP and said he was told "outright" that they would not accept shared care for ADHD. He moved areas and tried another GP, and had "the exact same experience".

"It is incredibly stigmatising to visit your family doctor to ask for help for something that you're receiving support for, but having to pay for it, to then be told 'that's not going to happen for you'," he said.

He said the second GP he visited put him forward for an NHS assessment, but he faces a long wait.

"I already have a diagnosis, and I'm now taking up a spot on that waiting list.

"It begs the question of how many people who are on the waiting list for assessment in Wales actually already have a diagnosis in place, and how much capacity could be freed up if those diagnoses were accepted as they are."

Getting an ADHD diagnosis followed by treatment and support can be "life-changing" for many.

An ADHD UK report in October 2023 found one adult in Wales had been waiting eight-and- a-half years for an NHS assessment.

ADHD UK's Henry Shelford told ITV Cymru Wales that getting a shared care application accepted in Wales is a "compounding problem".

"So many GPs are saying no, it is leaving people who are hugely struggling, without that support," he said.

"An ADHD assessment, whether done privately or by the NHS, are the same and they're often done by the same people.

"The problem with shared care would go away if the NHS didn't have these extraordinarily long waitlists. So many people are being let down."

"Wales obviously gets to set its own standards, which it does so successfully in other areas. This is an area where it is failing. It could change that, and it should change that."

• 'If I broke my leg and had the x-ray done privately, the GP wouldn't say I don't believe your leg's broken'

As part of ITV Cymru Wales' exclusive survey, several individuals shared their experiences of applying for shared care with their GP.

One person, who wished to remain anonymous and whose GP refused shared care, said "it was a practice decision due to lack of knowledge and confidence".

They added: "This has caused great hardship in getting regular prescriptions.

"Shared care is a lottery. I was on the ADHD waitlist for 2+ years. Without shared care, if the local ADHD service dissolves, I will be without meds permanently despite being on a low dose which is readily available."

Leela Homewood relocated to south Wales from north England and said she had to rejoin an NHS waiting list for a diagnosis. Having now been on this list for a year, she has been informed that it is currently up to a five-year wait.

She sought a private diagnosis with a doctor who had recently retired as an ADHD specialist within the NHS. However, when speaking to her GP about shared care, she felt she was treated "incredibly poorly".

"When I finally was able to speak to a GP she was incredibly biassed and unprofessional about my private diagnosis," she said.

She claimed that her GP didn't offer any advice on next steps, saying "I felt very let down by this".

Leela is currently going through titration - the process of finding the right medication - privately. She said "the cost of this is taking its toll" and worries how long she can afford these payments.

In total, Leela has spent £1,050 on her diagnosis, three appointments, and medication. 

Tudor, from Aberystwyth, was diagnosed with ADHD in 2022 and said "if [he] knew this sooner and got a diagnosis, [his] education would've been better - a better experience, university experience, everything could've changed."

Even after being diagnosed, he said that he had looked into a diagnosis through the NHS, but felt it was "an absolute non-starter".

GPs are advised to decline shared care if they feel they cannot do it safely.

The Royal College of General Practitioners, which represents GPs across the UK, said: "Regrettably, there is often a long wait for NHS ADHD diagnosis and as a result we understand why some people elect to have privately funded diagnosis.

"In a shared care agreement, there are responsibilities for the specialist as well as the GP. Specialists are required to review patients and their medication and also to check for other mental health conditions.

"These fulfilments are not always followed up in either the private or NHS sector. It is important to recognise that the relevant drugs are controlled substances and that GPs are required to follow local pathways."

The British Medical Association said: "Shared care agreements are negotiated care parameters that allow GPs to prescribe and monitor specialist medications, including adverse health effects of drugs, whilst the specialist team monitors the patient's condition and deals with any issues raised by the monitoring GP.

"GPs should decline such agreements if they are not reasonably able to safely undertake shared care. In these circumstances, specialists will be expected to prescribe and provide these specialist medicines for their patients directly.

"In the case of patients seeking private care, there needs to be a robust condition-long commitment to the specialist providing input to the patient concerned.

"This is a condition for safe shared care which cannot always be reliably guaranteed by the very nature of private medicine."

The Welsh Government has said it is aware that adult ADHD services are "in their infancy and at different stages of development across Wales".

It added that it is "working to improve service provision, access to assessment, pre and post diagnosis support".

It also said a national adult ADHD Pathway Task and Finish Group is working to address issues around the prescribing of medication, including shared care arrangements with GPs.

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