People living with attention deficit hyperactivity disorder (ADHD) have said they are being left feeling “jittery” and “anxious” amidst a global shortage of medicine which they feel is “not being taken seriously”.
The Department for Health and Social Care has said the problem is a result of a worldwide supply issue and increased global demand of ADHD medications including methylphenidate, lisdexamphetamine and guanfacine.
Paul Kelly, 45, from Leicester, lives with ADHD and told the PA news agency he only has five days’ worth left of atomoxetine, a non-stimulant medication to treat ADHD and is unsure if he will receive more before he runs out.
Without having medication, I go back to all of my core ADHD symptoms and one of my main ones is executive dysfunction, which is trouble breaking down tasks— Hannah Johnson, who lives with ADHD
“Without the medication, it feels like a boiling pan of water, and taking the medication is like taking it off the heat,” said Mr Kelly, a freelance writer.
“If I take atomoxetine, I feel normal, I feel fairly level, I feel relatively calm. Without it, I tend to find I’m very jittery.
“The only way that I can describe the physical sensation is like brain zaps. It feels like the brain is trying to connect electrically and it’s just constantly short-circuiting.”
He is concerned the nationwide shortage is not being dealt with as seriously as other medical conditions.
He explained: “Because it’s ADHD and it’s not a condition someone dies from, I don’t think it’s taken particularly seriously.
“The knock-on effects it can have on productivity and for people’s mental health, it’s something that people should be working a lot harder to remedy… I don’t think that’s been taken into account at all.
“(The surgery) hasn’t bothered to contact me which feels deliberate. It feels like ‘we don’t want to deal with this, we’ll just farm it out to someone else’.”
Hannah Johnson, a 33-year-old from Wigan, Greater Manchester, who was diagnosed with ADHD as an adult, said she fears she will have to ration her current medication in case she cannot receive more.
Ms Johnson, a nursery practitioner, was taking lisdexamfetamine but was left without any medication for nearly three weeks due to the shortage.
She has now made a temporary switch to amfexa and has 30 days’ worth, but fears she may have to ration this dosage until it is confirmed she can receive more medicine.
She told PA she suffered from depression and suicidal thoughts before taking medication and relies on the medicine to help her complete everyday tasks.
“Without having medication, I go back to all of my core ADHD symptoms and one of my main ones is executive dysfunction, which is trouble breaking down tasks,” Ms Johnson said.
“It becomes 400 different tasks in my head and then I get overwhelmed and can’t do it and then I get anxious about it.”
She is concerned pharmacists and healthcare professionals at ADHD clinics are not providing enough support for those affected by the shortage.
She said: “It’s very mentally draining and isolating and I feel very much that they don’t care.
“The shortage of medication and then chronic understaffing and underfunding of the service as a whole, it’s very rare that you can access any support, so you feel like you’re left to your own devices.”
Because it’s ADHD and it’s not a condition someone dies from, I don't think it's taken particularly seriously— Paul Kelly
Meanwhile, Zoe Fullager, 55, mother to sons Jakob, 20 and Oliver, 19, who both live with ADHD, said her parental responsibilities are likely to increase as her children rely on medicine to function throughout the day.
The NHS service manager told PA: “Their dependency becomes much higher for me to keep them healthy.
“To now know that this shortage might well go on to the end of December, that means I’m going to have to go through a whole month with my sons unmedicated (which) is a really tough place.
“This is a Christmas I am not looking forward to.”
Ms Fullager, from Eskdale, Cumbria, said Jakob who takes methylphenidate and Oliver who is on lisdexamfetamine, are not medicating on certain days to make their medicine last longer.
PA understands health officials believe disruption to the supply of ADHD medication should be resolved between October and December 2023.
A Department for Health and Social Care (DHSC) spokesperson said it is working to resolve the issue and reduce the impact the shortage is having on patients.
They 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.”
