Epilepsy medicine shortages leave patients in fear of fatal seizures
People with epilepsy who fear their next seizure could be fatal are calling on the Government to take greater action to mitigate the impact of ongoing medicine shortages.
The Department of Health and Social Care has warned that 5mg doses of generic lamotrigine tablets, prescribed for epilepsy, will be out of stock until February 2024.
Branded versions of the drug are still available but they cannot entirely support the gap in the supply chain. Changing to an alternative can also exacerbate symptoms in some patients.
Around 625,800 people in the UK have epilepsy, or one in 107 people, according to the charity Young Epilepsy.
Although epilepsy related deaths are rare, about 1,200 people die from epilepsy each year in the UK. Around half of these deaths are sudden unexpected death in epilepsy (SUDEP).
Most SUDEP deaths occur during or right after a seizure, and claim the lives of 1 in 1,000 adults and 1 in 4,500 children with epilepsy in the UK each year.
Deaths in people with epilepsy also increased by 70 per cent between 2001 and 2014, according to charity Epilepsy Action.
Lamotrigine is a medicine used to treat epilepsy, and can also be used to help prevent depression and bipolar disorder in adults. Seizures are bursts of electrical activity in the brain that temporarily affect how it works – lamotrigine slows these electrical signals down, stopping seizures and saving lives in the process.
The Department of Health issued a medicine supply notification for lamotrigine 5mg dispersible tablets in October 2023. This shortage is putting epileptics at risk of serious injury or even death, experts and charities have warned.
Joe Paternoster, 24, from Nottingham, relies on a twice-daily dose of 200mg of branded lamotrigine, Lamictal, to keep his epileptic seizures at bay.
Mr Paternoster, who is ordinarily given a two-months supply at a time, said he had “amassed a stockpile” in preparation for shortages, as he was “conscious something like this might happen”.
The software company graduate intern said: “Since I’ve started living alone, I’ve always kind of made it so that I tend to have at least a month’s supply of tablets.
“I always want to ensure that I really do have that safety net, that buffer of tablets which can keep me going.”
Pharmacists prevent patients building excessive stockpiles by blocking them from requesting prescription medications too frequently.
‘There is a risk of dying’
Some patients affected by medicine supply issues, such as those with ADHD, have resorted to rationing their tablets amid shortages. But this is not an option for Mr Paternoster – missing a single tablet for even a few hours could trigger a seizure.
He said: “If I missed one tablet, there’s a very high chance I would have a seizure. If I missed two tablets, so that’s no lamotrigine in a 24-hour period, I would pretty much definitely have a seizure.”
Each seizure puts Mr Paternoster and others with epilepsy at risk of serious harm – and even death.
“You can get injured, you can break bones, it can be quite bad in general for your mental health and indeed with seizures there’s a risk of dying,” he said.
Mr Paternoster would also face a one-year driving ban. “Quite pertinent to me is that if I have one seizure – even if it’s just for missing a tablet – I will automatically be banned from driving for a year, so the DVLA will take your licence away.”
Blake, who only wanted to give his first name, is recovering from a recent hospital stay following an epileptic seizure.
He has a day and a half’s dose of sodium vaproate left and fears he could have another major relapse if he is unable to get hold of it before that runs out.
The 28-year-old said his pharmacist was struggling to stock a number of anti-seizure medications.
“I’ve got so scared that they’re not going to get it,” said Blake.
“I’m now calling the GP, at the moment, pretty much every day, sometimes twice a day, sometimes three times a day, even at times, four times a day just to try and get this stuff.”
Strain on people with long-term conditions
Blake, who has been physically scarred from seizures, said they have also impacted his mental health. He said he is concerned that he could be faced with little option but to take more medication to safeguard his mental health.
He said: “It’s strange to say the least that the Government are letting it get this far in the first place.
“How much further do we have to experience the shortage before somebody steps in and goes, ‘this is actually a severe problem, this actually needs fully dealing with’?”
Experts have warned that the stress and anxiety brought on by challenges sourcing medication can exacerbate patients’ epilepsy.
Mark Devlin, Young Epilepsy CEO, has called for an end to the repeated pattern of shortages in crucial medication that puts added strain on those living with long-term conditions and ultimately puts lives at risk.
Mr Devlin said: “Anti-seizure medications are life-saving drugs, without a consistent supply those that rely on them are left open to serious injury or even death.
“Government and the pharmaceutical industry must ensure there is a reliable supply of these vital medications and work together with specialist charities to understand the impact on patients of the cycles of shortages we have seen in recent years.”
Lisa O’Brien, a trustee for epilepsy charity HOPE and head of health and wellbeing and and epilepsy nurse specialist at The Meath Epilepsy Charity, said: “This is quite an issue with the people I currently support and the impact of not having access to these medications could be detrimental to seizure control.
“Some people are extremely brand sensitive and not being able to source the brand they require is worrying.”
A Department of Health and Social Care spokesperson said: “We understand how frustrating and distressing the possibility of medication shortages can be and are aware of supply issues with some lamotrigine and carbamazepine products which are used in the management of epilepsy.
“These have been communicated to the NHS, with information and advice provided on how to manage patients affected by these issues.
“The department is working closely with suppliers, NHS England, the Medicines and Healthcare products Regulatory Agency, the devolved governments and other stakeholders to ensure patients continue to have access to the treatments they need. We are working to resolve these issues as soon as possible.”
