A warning has been issued about a serious shortage of ADHD medication that has forced patients to call dozens of pharmacies to get their hands on the life-changing pills.
A head of an ADHD charity said the impact of “the sudden withdrawal of medication is akin to taking a wheelchair away from a disabled person who needs it”, and urged the government to solve the problem for more than 200,000 people taking the pills.
The government issued a safety alert saying that three drugs for the neurodevelopmental disorder have been affected by supply problems that it says are “caused by a combination of manufacturing issues and increased global demand.”
The shortages of methylphenidate (also known by the brand name Concerta XL), lisdexamfetamine (Elvanse), and guanfacine (Intuniv) are expected to be resolved in December.
The alert also said supply problems with atomoxetine, a fourth ADHD drug, that began in July, should end this month, but several dosage sizes still face active supply problems.
Jess Price, a 26-year-old ADHD patient from central London who takes atomoxetine, said none of the 43 pharmacies they called an hour away could supply him with a full month’s worth of pills.
Henry Shelford (pictured), chief executive of the charity ADHD UK, said the impact of “the sudden withdrawal of a medication is similar to taking a wheelchair away from a disabled person who needs it”, and urged the government to solve the problem for the more than 200,000 people. in the pills
The shortages of methylphenidate (also known by the brand name Concerta XL), lisdexamfetamine (Elvanse), and guanfacine (Intuniv) are expected to be resolved in December.
The Department of Health and Social Care said prescribers should not supply new patients until the shortage ends, and that GPs should contact a “patient specialist team for advice on management options” if medicines are not available.
Jess Price, 26, from central London, who takes non-stimulant atomoxetine, said none of the 43 pharmacies they called an hour away could supply a full month’s worth of pills. “None of those pharmacies had my entire prescription in stock,” they said.
“ADHD medication is life-changing for many people with ADHD,” said Henry Shelford, chief executive of ADHD UK. “ADHD is a disability and suddenly withdrawing medication is similar to taking a wheelchair away from a disabled person who needs it.”
He criticized the NHS for not having a plan in place, saying “people only find out when their pharmacy can’t supply” and “they have been left stranded without support”.
“It is an abject failure, but sadly this lack of attention is something we expect due to our stigmatized condition,” he added.
‘The Department of Health and Social Care’s band-aid memo with the suggestion that GPs ‘contact the patient’s specialist team’ is ridiculous. Patients often wait years to meet that medication team. The latest quarterly data from the NHS shows there are 202,304 people receiving ADHD medication.
‘Medication is carefully administered and the dose and type are calculated over months. The idea that it can be cut and changed is wrong. The idea that teams of specialists have the capacity to carry out medication reviews in this quantity is erroneous.
‘This is devastating for people across the country and will be life-changing for some. The NHS is letting people with ADHD down; this is just the latest way they are failing us.’
After requesting a prescription on online service Pharmacy2U on Tuesday, it became clear that ADHD patient Jess would have to try another route, and the GP’s clinical pharmacist was told, after a two-day wait, to call as many chemicals as possible.
Jess even resorted to putting out a call on social media and asking relatives across the country to see if her local pharmacy had the pills in stock, and was forced to ration the medications.
‘I didn’t know when I was going to be prescribed it, so on days when I didn’t have anything important to focus on, I wouldn’t take the medication because I was worried I would run out when I needed it most. ‘
The government issued a safety alert saying that three drugs for the neurodevelopmental disorder have been affected by supply problems that it says are “caused by a combination of manufacturing issues and increased global demand.”
But that’s far from a perfect solution, Jess said: “Not taking my medication significantly worsened my ADHD symptoms, as it affects the things I need to do daily, including difficulties sleeping and my executive function.”
‘It affects my whole life. I was supposed to go to a concert today, but I missed it because I have insomnia problems and couldn’t sleep until at least five thirty in the morning.
‘It can take me three hours to fall asleep and it’s hard to wake up, but it’s much easier with my medication. This morning, an alarm even went off, the radio came on and a sunlight alarm came on and I just fell asleep.’
Jess said that the last time there was a shortage, their untreated symptoms meant they faced major problems in work and personal life due to increased difficulty with time management and organisation.
And because people with ADHD often struggle with planning and organization, the fact that patients need sustained effort just to get the medications that can help is a paradoxical conundrum.
“It’s inaccessible anyway, but the fact that there are more bureaucratic hoops to jump through for people who struggle with executive function makes it even more inaccessible,” Jess said.
‘It feels like a full-time job just to have access to my life-changing medication. It helps me function better as a human being. Right now I feel like a useless mess.’
Of all the pharmacies Jess contacted, only five had even a small amount of a monthly prescription in stock, and shortages like this have already affected ADHD patients three times this year.
Jess finally managed to pick up about 12 days of her prescription and received an IOU from the pharmacy for the rest, which they remain skeptical about receiving before supplies run out.
Another patient, Jenny (not her real name), said she had not been taking her medication, a 70 mg dose of Elvanse, for more than a week because she was exhausted.
The 49-year-old social worker told MailOnline: ‘I called a lot of pharmacies and none of them had a spare in stock. Only one had Elvanse in 40 mg and 30 mg.
She said her “quality of life has improved significantly by understanding myself better since finding out I have ADHD and take medication,” but now she can’t get the medication she worries about losing her career.
‘I’m now on Universal Credit, waiting to hear back from ESA and having been refused PIP, I could lose my car because I definitely can’t afford to pay my car loan now. And working as a social worker without a car or even getting a job will be very difficult, if not impossible.’
A Department of Health and Social Care spokesperson said: “We are aware of supply issues affecting medicines used to treat ADHD due to increased global demand, and have sent communications to the NHS to advise healthcare professionals. on the treatment of patients during this time. .
“We continue to work closely with the respective manufacturers to resolve the issues as quickly as possible and ensure patients have continued access to ADHD medications in the UK.”