A charity supporting people with attention deficit hyperactivity disorder (ADHD) is preparing a legal challenge against a regional NHS board that has temporarily stopped accepting referrals for adults over 25.
Coventry and Warwickshire integrated care board said any new referrals for people over 25 would be paused from 21 May to reduce waiting lists for children.
Several other ICBs, including Herefordshire and Worcestershire and some in London, have previously paused ADHD referrals but have accredited other providers for GPs to send referrals to under “right to choose” legislation.
ADHD UK understands that this is the first time that local people aged over 25 will be able to obtain an assessment only by paying privately, which one former patient did at a cost of £1,500.
The charity is beginning the process to mount a legal challenge under the right to choose legislation, which allows patients to choose their provider for certain healthcare services when referred by their GP.
Henry Shelford, the chief executive of ADHD UK, said: “It’s ridiculous. We know one in 10 men and boys and one in four women and girls with ADHD will at some point try to take their own life, so we know there’s a danger.
“We also know that ADHD medication can have a significant positive effect and you can’t get it unless you have a diagnosis. It’s part of the discrimination and a lack of taking ADHD seriously that we face every day.”
Shelford added that it could set a worrying precedent for cash-strapped trusts cutting services elsewhere in the NHS, including other ADHD services.
Dr Imogen Staveley, the chief medical officer at NHS Coventry and Warwickshire ICB, said the “emergency policy” had been introduced to address “the unacceptable ADHD assessment waiting times, currently affecting over 7,500 children”, some of whom were waiting up to 10 years for assessment in the local area.
She hoped the pause would “support the development of a sustainable, all-age ADHD pathway for the future”.
ADHD is defined by the World Health Organization as a persistent pattern of inattention or hyperactivity-impulsivity that negatively impacts academic, occupational or social functioning.
Anita Thapar, a psychiatrist who chairs the ADHD taskforce set up by NHS England, said services were struggling because they were “playing catch-up” with the changing understanding of ADHD.
“The research on ADHD has really matured in the last 20 years but the services have not been able to catch up with what we now know about ADHD,” she added.
“There were concerns initially: is ADHD being overdiagnosed? The research, evidence and data used in our taskforce shows that in England – though this is not true of all countries – ADHD is under-recognised, under-diagnosed and under-treated.”
She said that ideally ADHD would be diagnosed in childhood, but in reality many people were missed or misdiagnosed, especially females. There are negative mental and physical health outcomes – including obesity and cardiovascular disease – as well as societal ones, including an increased risk of ending up in the criminal justice system, in poverty and not doing well in school.
Part of the problem is that services were designed when ADHD was considered rare. It is now known to affect 3-5% of the population, and therefore psychiatrists needed additional training to diagnose it, Thapar said.
Sarah Walter, the integrated care system network director at the NHS Confederation, said integrated care boards were making tough choices about “the services they commission given the very tight financial envelope that they need to work within”.
She added: “It is clear that current waiting lists for ADHD are too long, and commissioners and providers are having to take a pragmatic approach to respond to the needs identified. In some instances, this may mean prioritising certain groups, be it by age or length of wait.”
David Hare, the chief executive of the Independent Healthcare Providers Network (IHPN), said there was ample “local capacity available in the independent sector which can be used to cut the backlog of care and improve access to diagnosis and treatment for all those in need, regardless of age”.
Before the Coventry and Warwickshire board’s pause, Andy Morrison, from Coventry, paid £1,500 to get a private assessment when he was told he would have to wait up to three years on the NHS. He was developing an alcohol abuse problem and had been unable to hold a job for longer than six months. He is now on medication, which he has found life-changing.
“I’ve never looked back and getting the diagnosis gives clarity and context – you almost grieve for the life you could have had if you had been diagnosed in the first place,” he said.
A spokesperson for NHS England said: “ADHD services are under significant pressure from a huge rise in people coming forward, and we know that is resulting in unacceptably long waits for assessment and treatment – particularly for children and young people.
“While local NHS teams are responsible for taking action to tackle excessive waits, the NHS has set up an ADHD taskforce to examine ways services for patients can be improved.”