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 Brighton-based author and comedian, who created the web series Life in ADHD, 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,” she 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.”

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.

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.

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.

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 conditions.

After the shortage began, Deborah was always able to get hold of one of his medications, methylphenidate, but the exact brand would vary each month.

Now, she says, the shortage in his medication has “never been as bad”.

“I have made 45 phone calls to pharmacies to obtain the remaining 12 tablets 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, as that was all they had in stock. She then rang pharmacies across north-west England to find the rest.

Oliver, 14, says he feels more unstable and anxious when not on his medication.

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

“You have to be on your best behaviour at school at all times and I feel chaotic without the meds, it’s like walking on eggshells and takes up all my energy.”

Deborah says: “Without medication he wouldn’t be achieving the grades he is at school and his learning would be severely impacted.

“It’s now at the point where we are having to ration his meds, so not giving them at the weekend so he has enough for school.”

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

The DHSC has a published list of currently available and unavailable ADHD products in England that it regularly updates.

It says: “We have provided comprehensive guidance to healthcare professionals about how to manage and advise patients while there is disruption to supply.

“We are keeping this guidance under review, and we advise any patient with concerns to speak to their clinician.”

It adds if pharmacies are unable to source certain drugs, prescribers should consider “unlicensed imports or contact specialists to understand if an alternative treatment could be utilised”.

The British Generics Manufacturers Association represents most manufacturers of ADHD medication.

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

However, it understands a number of manufacturers aim to return to the market with more supplies this autumn and “supply will progressively increase into early 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 shortages,” it adds.

Additional reporting by Jonathan Fagg