ADHD: ‘We’re sharing and rationing meds to get by’

A year ago, life for many people in the UK with attention deficit hyperactivity disorder (ADHD) became unpredictable and disorientating as their medications suddenly became scarce. They were told the shortages would be over within months – but people with the condition tell the BBC it is still a problem.

Spending two hours on hold to her pharmacy or GP each day has become the norm for Lorelei Mathias, 44, who has struggled to get a consistent supply of her prescription ADHD drugs since the shortages began last September.

The London-based author and comedian, who runs a writing retreat in Brighton, says she has gone “against advice” and started rationing, hoarding and sharing pills with friends on similar prescriptions to make sure they all have enough.

“I have many friends who are also really struggling and splitting pills or shutting down from work as they can’t function without it,” the creator of the web series, Life in ADHD, says.

“We either have to tip each other off as to which chemists have stock, or we have to call in on each other’s houses, or leave them out in plastic bags hidden in the garden if no one’s home.”

Patient safety alert

For some like Lorelei and her friends, rationing pills has been the only option and holding down a job has become too much as their original symptoms have returned.

Each day she needs to take two medications but she says the reliability of supplies for both remains “an unknown”.
When the UK government issued a patient safety alert warning last September about a shortage of many ADHD medications, it said it expected the disruption to end by December 2023.

The Department of Health and Social Care (DHSC) says most supply issues have been resolved and it is working with manufacturers on the remaining problems.

Why is there an ADHD medication shortage?

Dr Ulrich Müller-Sedgwick, a consultant psychiatrist for adult neurodevelopmental pathways at the Royal College of Psychiatrists, says production and manufacturing issues are a factor.

He says: “There’s only a limited number of factories where these medicines are actually produced. They’re stimulants, so there’s also quite a high security standard in these factories and they’re not easy operations to run.”
The medications are often classed as controlled drugs, which means a maximum of one month’s supply can be prescribed at a time.

But Dr Müller-Sedgwick says the main factor was demand “really went up” in the last four years, including the second phase of COVID lockdowns.

“All around Europe and all around the world saw increased demands for a patient coming forward for assessments,” he says.

Supplies remain fragile, with some forms of two of the five licensed medicines – atomoxetine and methylphenidate – still affected.

There has been a 22% rise in adults receiving ADHD medication in England, according to NHS Business Services Authority data.

The number of identified adults with a prescription rose from 111,025 in April-June 2023, to 135,025 in the same period this year.

The figure for children also rose, by 7%, from 90,491 to 96,727.

What is ADHD?

People with ADHD show a persistent pattern of inattention and or hyperactivity–impulsivity that interferes with day-to-day functioning and or development.

In the UK, the prevalence of ADHD in adults is estimated at 3% to 4%, according the National Institute for Health and Care Excellence.

Around 20-30% of people with ADHD have problems with concentrating and focusing, but not with hyperactivity or impulsiveness, according to the NHS.

This is also known as attention deficit disorder (ADD), which can sometimes go unnoticed because the symptoms may be less obvious.