Simon Hawkins says not knowing when he will get his tablets is stressful as shortages hit Wales.
Image source, Simon HawkinsA dad left without medication for two weeks due to supply issues says the rug has been pulled from under him.
Simon Hawkins from Caerphilly said it was unnerving not to have his attention deficit hyperactivity disorder (ADHD) tablets.
It comes as prescribers are told not to offer certain ADHD medications to new patients while high demand and manufacturing issues are resolved.
The Welsh government said other treatments were available.
Mr Hawkins, 35, was diagnosed with ADHD in January 2023 after struggling with concentration and memory.
“The best way to describe it is, if something is not right in front of my face, it’s as if it doesn’t exist,” he said.
“It’s staying on top of all the regular day-to-day things that the vast majority of people don’t think about.”
He added that swapping between tasks, such as in his IT job, could be exhausting.
“All it takes is for an email to pop up and I lose track. Someone will ask you a question, even ask if you want a cup of coffee, and that’s all it takes to ruin your train of thought,” he said.
“Those distractions are just constant all day, every day.”
The father-of-three was prescribed 70mg daily of a medication called Elvanse – the maximum recommended dosage of the drug.
“With the medication, I have the energy to be able to pick something up, do it for a bit, and then do something else afterwards,” he said.
Mr Hawkins was diagnosed privately, after spending many years trying through the NHS.
It means he has to reapply for his medication from a psychiatrist each month, rather than having an automatic repeat prescription system.
“That’s not always easy, even if you don’t have ADHD,” he said.
“I was a touch late reordering but, if it had been filled fairly quickly, I wouldn’t have run out.”
He said his pharmacy was really good at communicating so it was unnerving when he still didn’t have his tablets more than two weeks later.
“That feeling of finally getting somewhere, and then it’s almost like the rug has been pulled out from under me,” he said.
Mr Hawkins said a wild goose chase followed, because the 70mg pills were out of stock.
Image source, Simon Hawkins
A combination of 20mg and 30mg tablets had to be approved by the psychiatrist because Elvanse is a controlled drug.
Sitting in his psychiatrist’s office, calling the pharmacy, they discovered the 30mg tablets were no longer available and agreed on 60mg, made up of 20mg tablets.
But when Mr Hawkins got the prescription to the pharmacy, those were out of stock too.
“If I have got the time or energy I can ring around a bunch of other pharmacies that may have them,” he said.
“But I work full time and it seems like it’s such a widespread issue.
“It’s stressful. I am definitely noticing things I was learning to cope with are becoming more difficult.”
Which ADHD medications are in short supply?
In an online document, NHS Wales, said various strengths of the following drugs were affected by supply disruptions:
Methylphenidate:
- Equasym XL 10, 20 and 30 mg capsules
- Xaggitin XL 18 and 36 mg prolonged-release tablets
- Concerta XL 54 mg prolonged-release tablets
- Xenidate XL 27 mg prolonged-release tablets
Lisdexamfetamine:
- Elvanse 20, 30, 40, 50, 60 and 70 mg capsules
- Elvanse Adult 30, 50, and 70 mg capsules
Guanfacine:
- Intuniv 1, 2, 3 and 4 mg prolonged-release tablets
Mr Hawkins said he was a mess while arranging a family tea party for his son’s recent third birthday.
“I was frantically wrapping presents when I was supposed to be picking him up from nursery,” he said.
He said a system where pharmacies could share stock or supply records would help redirect patients.
‘People left stranded’
Henry Shelford, charity ADHD UK’s chief executive, said the sudden removal of medication was “akin to removing a wheelchair from a disabled person that needs it”.
“The NHS should have realised this was happening and had a plan. Instead, people are only finding out when their pharmacy can’t supply,” he said.
“They’ve been left stranded.”
Community Pharmacy Wales said it was aware of the shortages and pharmacies had been told they were expected to resolve by December.
“We are aware that prescribers have been advised not to initiate new patients on products affected by this shortage until the supply issues resolve,” it said.
“Community pharmacy teams continue to work hard across Wales to source medications for patients wherever possible.”
The Welsh government said the shortages affected all parts of the UK, adding: “On 27 September, we informed NHS Wales of the supply disruption and of mitigating actions.
“This included information on alternative treatment options that are available such as sourcing unlicensed imported medicines.”