A warning has been issued over a dire shortage of ADHD medication that has left patients calling dozens of pharmacies to get hold of the life-changing tablets.
An ADHD charity boss said the impact of ‘the sudden removal of medication is akin to removing a wheelchair from a disabled person that needs it’, and urged the government to resolve the issue for the more than 200,000 people on the pills.
The government issued a safety alert saying that three medications for the neurodevelopmental disorder have been affected by supply issues which it says is ’caused by a combination of manufacturing issues and an increased global demand’.
The shortage of methylphenidate (also known by brand name Concerta XL), lisdexamfetamine (Elvanse) and guanfacine (Intuniv), is expected to resolve by December
The alert also said supply issues for atomoxetine, a fourth ADHD medication, which started in July, should be over this month – but several dose sizes are still facing active supply issues.
ADHD patient Jess Price, 26, from central London, who takes atomoxetine, said that none of the 43 pharmacies they called as far as an hour away, were able to supply a full month’s of pills
Henry Shelford (pictured), CEO of charity ADHD UK said the impact of ‘the sudden removal of medication is akin to removing a wheelchair from a disabled person that needs it’, and urged the government to resolve the issue for the more than 200,000 people on the pills
The shortage of methylphenidate (also known by brand name Concerta XL), lisdexamfetamine (Elvanse) and guanfacine (Intuniv), is expected to resolve by December
The Department for Health and Social Care said that prescribers should not supply new patients until 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 non-stimulant atomoxetine, said that none of the 43 pharmacies they called as far as an hour away, were able to supply a full month’s of pills. ‘None of those pharmacies had my entire prescription in stock,’ they said.
‘ADHD medication is life changing for many with ADHD,’ said ADHD UK CEO Henry Shelford. ‘ADHD is a disability and the sudden removal of medication is akin to removing a wheelchair from a disabled person that needs it.’
He slammed the NHS for not having a plan in place, saying that ‘people are only finding out when their pharmacy can’t supply’ and have ‘been left stranded with no support’.
‘It is an abject failure but sadly this lack of care is something we’ve come to expect with our stigmatized condition,’ he added.
‘The Department of Health and Social Care sticking-plaster memo with the suggestion that GPs ‘reach out to a patient’s specialist team’ is laughable. Patients are often waiting years to meet that medication team. The latest quarterly data from the NHS shows there are 202,304 people in receipt of ADHD medication.
‘Medication is carefully given with dosage and type worked out over months. The idea it can be chopped and changed is wrong. The idea that specialist teams have the capacity to do medication reviews in this quantity is wrong.
‘This is devastating for individuals across 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 in which we are being failed.’
After ordering a prescription with online service Pharmacy2U on Tuesday, it became clear that ADHD patient Jess would have to try another route, and the GP’s clinical pharmacist said, after a two day wait, to call as many chemists as possible.
Jess even resorted to putting a call out on social media and asking family across the country to see if their local pharmacy had the pills in stock – and was forced into rationing medication.
‘I didn’t know when I was going to get prescription in, so on days when I did not have anything important to focus on, I didn’t take meds as I was worried I’d run out when I needed it most.’
The government issued a safety alert saying that three medications for the neurodevelopmental disorder have been affected by supply issues which it says is ’caused by a combination of manufacturing issues and an increased global demand’
But that is far from a perfect solution, Jess said: ‘Not taking my medication significantly made my ADHD symptoms worse as it impacts things I need to do on a daily basis, including struggles with sleep and my executive function.
‘It impacts my entire life. I was supposed to go to a gig today but I missed that because I struggle with insomnia so I couldn’t sleep until at least half five in the morning.
‘It can take three hours for me to get to sleep and it’s hard to wake up, but it’s significantly easier with my meds. This morning, I even had an alarm go off, the radio went off and a sunlight alarm and i just slept through it.’
Jess said that last time there was a shortage their untreated symptoms meant they faced significant issues at work and personal life due to the increased difficulty with timekeeping and organisation.
And because people with ADHD often struggle with planning and organisation, the fact that patients will need to sustained effort just to get their medications that can help is a paradoxical conundrum.
‘It’s inaccessible anyway, but the fact that you have to go jump more bureaucratic hoops for people that struggle with executive function makes it even more inaccessible,’ Jess said.
‘It feels like full-time job just to have access to my medication which is life-changing. It helps me become more functioning as a human being. I feel like a useless mess at the moment.’
Out of all the pharmacies Jess contacted, just five even had a small amount of a monthly prescription in stock – and a shortage like this has already impacted the ADHD patient three times this year.
Jess eventually managed to pick up around 12 days worth of their prescription, and was given an IOU from the pharmacy for the rest, which they remain sceptical about receiving before supplies run out.
Another patient, Jenny, not her real name, said that she has not been taking 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 around a lot of pharmacies and none had a spare one in stock. Only one had Elvanse in 40 mgs and in 30 mgs.
She said her ‘quality of life improved significantly by understanding myself better since knowing I have ADHD and taking medication’ but that now she is unable to source the medications she is worried about losing her career.
‘I am on Universal Credit now, waiting on response from ESA and having had denied PIP, I might 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 become very difficult if not impossible.’
A Department of Health and Social Care spokesperson said: ‘We are aware of supply issues affecting medicines used for the management of ADHD due to increased global demand, and we have issued communications to the NHS to advise healthcare professionals on management of patients during this time.
‘We continue to work closely with the respective manufacturers to resolve the issues as soon as possible and to ensure patients have continuous access to ADHD medicines in the UK.’