There are 2.8 million people with suspected ADHD in the UK – yet adults across the country are finding it increasingly impossible to get a diagnosis amid a breakdown of services.
Over the last two years, NHS providers across the country have been forced to close their doors to patients. Just last week, Leeds and York Partnership NHS Foundation Trust announced it would no longer accept new referrals as people on the current waiting list face a 10-year wait for a diagnosis.
To put this in perspective, this trust is only funded for 16 assessments a month despite getting a whopping 170 referrals every month, which the trust said is at “unsustainable levels of demand”.
Historically NHS ADHD services have always been small and underfunded, however, the mismatch has only become apparent in the last couple of years as demand has exploded.
The National Institute for Health and Care Excellence estimates the global prevalence of ADHD in children to be around 5 per cent, and in adults in the UK at 3 to 4 per cent.
However, NHS England as data is varied and collected across different organisations these figures are likely to “significantly underrepresent” the number of people seeking, waiting for and with a diagnosis of ADHD.
Regardless of the reason for the boom, NHS services have not kept pace with demand, but there has been rapid growth in private sector provision.
Adults who suspect they have ADHD have been forced to pay thousands privately to seek a diagnosis, and now even these clinics are creaking under pressure.
One of the most well-known private providers in the country, Psychiatry UK, has had to stop taking private patients for ADHD assessments to focus efforts on assisting with NHS waiting lists.
Even this private provider has waiting times of up to a year for assessment for adults, and up to 10 months for medication services after diagnosis.
The clinic told The Independent: “Our patient numbers have grown 10 times over the last four years, which illustrates the scale of demand that now exists.”
Concern has also surfaced over some private clinics too easily handing out ADHD diagnoses – fuelling a potential overdiagnosis and access to medication which is not needed.
For those with ADHD, the condition can deeply impact their daily lives and medication is the only thing which will help some people. This cannot be given without a diagnosis, and so there are potentially thousands without access to medication which could transform their day-to-day lives. Health, work and education support also often rely on a formal diagnosis.
For children, where waiting lists are also abysmal, a diagnosis can also mean access to Special Education Needs (SEN) support in school and adjustments which can help them. Without a diagnosis, however, most will not access SEN support.
This week the Children’s Commissioner’s office published a report on the waiting times for autism and ADHD diagnoses in children.
The report warned: “It was clear from the interviews that how nurseries and schools responded to children before receiving a diagnosis of autism or ADHD had an important influence on how well a child and family were able to engage with childcare and education. For many parents, non-inclusive settings meant their ‘undiagnosed’ child was routinely neglected, excluded, isolated or sent home.”
Following the report’s release, an NHS spokesperson said: “The NHS is fully committed to supporting and improving the lives of those with autism and ADHD, and has published new national guidance to help local areas manage the 50 per cent increase in referrals seen over the last year.
“We know patients are still waiting too long for an ADHD diagnosis and that’s why the NHS has launched an independent expert task force to investigate the challenges facing services, help them manage the rising numbers of referrals, and continue to transform care to ensure everyone gets the support they need.”
A government spokesperson added it aims to reduce “unacceptable” waiting times for ADHD and other neurological conditions, and hopes to improve support for children following a diagnosis through its 10-year health plan.
The increase in ADHD diagnosis can be seen in the rapid increase in prescribing. According to the Nuffield Trust, between 2019/20 and 2022/23 there was a 51 per cent increase in the number of patients prescribed medication for ADHD.
This boom in medication demand also comes amid global medication shortages which are also heavily impacting the UK.
Last month The Independent, revealed doctors in the South West were told to stop starting patients on a long-acting type of medication, called Concerta in the UK. The instability of medication supplies has continued and is likely to continue for the foreseeable future.
These shortages are driven by a combination of increased demand and also post-pandemic disruption to manufacturing supply chains, so there is little the UK government can do.
As reports of waits and drug shortages worsen, this is a crisis which needs to be resolved – but for which there appear to be no easy fixes.
