ADHD drug shortage: ‘We’re prescribing drugs to get by’

A year ago, the lives of many people in the UK with attention deficit hyperactivity disorder (ADHD) became unpredictable and confusing as their medication suddenly became scarce. They were told the shortage would end within months – but people with the condition tell the BBC it’s still a problem.

Spending two hours waiting at her pharmacy or GP every day has become routine for Lorelei Mathias, 44, who has struggled to get a steady supply of her prescription ADHD medication since the shortage began last September.

The London-based writer and comedian, who runs a writing practice in Brighton, says he went “against advice” and started dosing, collecting and sharing pills with friends on similar prescriptions to ensure they all had enough.

“I have a lot of friends who also have a really hard time getting off pills or quitting a job where they can’t function without it,” says the author of the web series, Life in ADHD.

“Either we have to tip each other off about which chemists have stock, or we have to call into each other’s houses, or leave them in plastic bags hidden in the garden if nobody’s home.”

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

Each day she has to take two medications, but she says the reliability of supplies for both is “unknown.”

When the British government issued a patient safety alert Last September, she warned of a shortage of many ADHD drugs and said she expected the shortage 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 remaining issues.

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

He says, “There’s only a limited number of factories where these drugs are actually made. They’re stimulants, so there’s also a pretty high standard of safety in those factories, and they’re not easy to operate.”

The drugs are often classified as controlled drugs, which means that a maximum of one month’s dose can be prescribed at a time.

But Dr Müller-Sedgwick says the main thing has been that demand has “really increased” over the past four years, including the second phase of the COVID lockdown.

“Across Europe and around the world, we saw increased demands for patients to come forward for assessment,” he says.

Stocks remain vulnerable, with some brands of two of the five authorized drugs – atomoxetine and methylphenidate – still affected.

There has been a 22% increase in adults being prescribed ADHD medication in England, according to NHS Business Services Authority figures.

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 number for children also increased, by 7%, from 90,491 to 96,727.

People with ADHD exhibit persistent inattention and/or hyperactivity-impulsivity that interferes with daily functioning and/or development.

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

Around 20-30% of people with ADHD have difficulties with focus and concentration, but not with hyperactivity or impulsivity, according to the NHS.

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

Deborah’s son Oliver has ADD and autism. We are not using their real names as she wants to protect him from the stigma she says still exists around the situation.

After the shortages began, Deborah could always reach for one of her medications, methylphenidate, but the exact brand was different each month.

Now she says his lack of medication has “never been this bad”.

“I’ve made 45 calls to pharmacies to get the 12 pills left on his latest prescription,” she says.

Deborah, who lives in Stockport, managed to get 16 of the required 28 tablets from a pharmacy in Knutsford, where it was all they had in stock. She then called pharmacies across the North West of England to find the rest.

Oliver, 14, says he feels unstable and anxious when he is off his medication.

“I worry and get anxious because my emotions get stronger and it’s overwhelming and can ruin my day,” he says.

“You have to be on your best behavior at school all the time and I feel like a mess without meds, it’s like walking on eggshells and takes all my energy.

Deborah says: “Without medication he wouldn’t be getting the grades he is in school and his studies would be severely affected.

“Now it’s time we need to dose his meds, so don’t give them over the weekend so he has enough for school.”

NHS England says the DHSC is responsible for the procurement and continuity of supply of medicines.

DHSC has a published list of ADHD products available and not available in England that it is updated regularly.

It says: “We have provided comprehensive guidance to healthcare professionals on how to manage and counsel patients during a supply disruption.

“We are keeping these guidelines under review and we advise any patient who is concerned to speak to their doctor.”

It adds that if pharmacies are unable to obtain certain drugs, prescribers should consider “unlicensed importation or consult with specialists to understand if alternative treatments can be used”.

The British Generic Medicines Association represents most manufacturers of ADHD medicines.

It says it is experiencing a sustained period of relatively high shortages after production difficulties and rapidly growing demand meant some suppliers ran out of stock.

However, it understands that a number of producers are aiming to return to the market with more stock this autumn and “supply will gradually increase at the beginning of next year”.

“We also understand that some manufacturers are actively talking to the Department of Health and Social Care about practical ways to manage ADHD-specific deficits,” it adds.

Additional reporting by Jonathan Fagg