A warning has been issued over a severe shortage of ADHD medication, which has left patients calling dozens of pharmacies to get hold of the life-changing tablets.
The head of an ADHD charity said the impact of ‘suddenly taking away medication is like taking away a wheelchair from a disabled person who needs it’ and urged the government to resolve the issue for the more than 200,000 people who rely on the pills.
The government has issued a safety alert saying that three drugs for the neurodevelopmental disorder have been affected by supply problems, which it says are ’caused by a combination of manufacturing problems and increased global demand’.
The shortage of methylphenidate (also known by the brand name Concerta XL), lisdexamfetamine (Elvanse) and guanfacine (Intuniv) is expected to be resolved by December.
The alert also said supply problems for atomoxetine, a fourth ADHD drug, which started in July, should be over this month – but several dose sizes are still facing active supply problems.
The Department of Health and Social Care said prescribers should not supply new patients until the shortages are over, and that GPs should contact a “patient’s specialist team for advice on management options” if the drugs are unavailable.
Jess Price, 26, from central London, who takes the non-stimulant atomoxetine, said none of the 43 pharmacies she called up to an hour away were able to supply a full month’s supply of pills. None of these pharmacies had my full prescription in stock,’ she said.
ADHD medication is life-changing for many people with ADHD,’ said Henry Shelford, CEO of ADHD UK. ADHD is a disability and suddenly taking away medication is like taking away a wheelchair from a disabled person who needs it.
He slammed the NHS for not having a plan in place, saying that ‘people only find out when their pharmacy can’t supply’ and have been left ‘stranded with no support’.
‘It’s an abject failure, but sadly this lack of care is something we’ve come to expect with our stigmatised condition,’ he added.
‘The Department of Health and Social Care’s sticking plaster memo suggesting that GPs ‘liaise with a patient’s specialist team’ is ridiculous. Patients often wait years to meet that medicines team. The latest quarterly NHS data show that 202,304 people are receiving ADHD medication.
Medication is given carefully, with dosage and type worked out over months. The idea that it can be chopped up and changed is wrong. The idea that specialist teams have the capacity to review medication in this volume is wrong.
This is devastating for individuals up and down the country and will be life-changing for some. People with ADHD are being let down by the NHS – this is just the latest way we are being let down.
After ordering a prescription from online service Pharmacy2U on Tuesday, it became clear that ADHD sufferer Jess would have to try another route, and after a two-day wait, the GP’s clinical pharmacist said he would call as many pharmacies as possible.
Jess even took to social media, asking family members across the country to check if their local pharmacy had the pills in stock – and was forced to ration medication.
I didn’t know when I was going to get my prescription, so on days when I didn’t have anything important to focus on, I didn’t take my medication for fear of running out when I needed it most.
The government has issued a safety alert saying that three medications for the neurodevelopmental disorder have been affected by supply problems ’caused by a combination of manufacturing issues and increased global demand’.
But this is far from a perfect solution, Jess said: ‘Not taking my medication has made my ADHD symptoms significantly worse as it affects things I need to do on a daily basis, including struggling with sleep and my executive function.
It affects my whole life. I was supposed to go to a gig today, but I missed it because I struggle with insomnia, so I couldn’t sleep until at least half past five in the morning.
It can take me three hours to get to sleep and it’s hard to wake up, but it’s much easier with my medication. This morning I even had an alarm, the radio went off and a sunlight alarm and I just slept through it.
Jess said that the last time there was a shortage, her untreated symptoms meant that she faced significant problems at work and in her personal life due to increased difficulties with time management and organisation.
And because people with ADHD often struggle with planning and organisation, the fact that patients have to make a sustained effort just to get their medication that can help is a paradoxical conundrum.
It’s inaccessible anyway, but the fact that you have to jump through more bureaucratic hoops for people who struggle with executive function makes it even more inaccessible,’ says Jess.
It feels like a full-time job just to get access to my medication, which is life-changing. It helps me to become a more functional human being. I feel like a useless mess right now.
Of all the pharmacies Jess contacted, only five had even a small quantity of a monthly prescription in stock – a shortage that has affected the ADHD sufferer three times this year.
Jess eventually managed to pick up about 12 days’ worth of her prescription, and was given an IOU from the pharmacy for the rest, which she remains sceptical about getting before supplies run out.
Another patient, Jenny, not her real name, said she had not taken her medication, a 70mg dose of Elvanse, for more than a week because it was out of stock.
The 49-year-old social worker told MailOnline: “I rang a lot of pharmacies and none had a spare in stock. Only one had Elvanse in 40mg and 30mg.
She said her ‘quality of life has improved significantly because I understand myself better since knowing I have ADHD and taking medication’, but that now she is unable to get the medication she fears will ruin her career.
I’m on Universal Credit now, waiting to hear back from ESA, and having been refused PIP, I may 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, is going to be very difficult, if not impossible.
A spokesperson for the Department of Health and Social Care said: ‘We are aware of the supply issues affecting medicines used to treat ADHD due to increased global demand, and we have issued communications to the NHS to advise healthcare professionals on how to manage patients during this time.
We continue to work closely with the manufacturers concerned to resolve the issues as quickly as possible and ensure that patients in the UK continue to have access to ADHD medicines.
