More than seven in 10 people with epilepsy in the UK experienced difficulty getting their prescribed epilepsy medication in the past year, according to a new study published in the journal Pharmacy.
Researchers Eric Kyeremaa and colleagues set out to explore the impact of anti-seizure medication (ASMs) shortages on people with epilepsy and their caregivers.
Eric said: “We knew this was important because people with epilepsy were increasingly reporting shortages of their epilepsy medications through epilepsy charity helplines.
“These reports showed a real worry within the community, so it was felt to be essential to carry out a survey to understand how widespread the problem was and what impact it might have on people with epilepsy and their caregivers.”
An online survey was distributed between January and April 2024. There were 1,312 responses from people with epilepsy and their carers.
Shortages were most commonly reported for carbamazepine (92.6%), clobazam (82.6%) and topiramate (81.5%), but also included sodium valproate (60.8%), lamotrigine (65.2%), levetiracetam (62.8%), zonisamide (74.0%), lacosamide (71.0%) and brivaracetam (70.5%).
Two in five people (40.4%) reported stress, anxiety or both caused by the medication shortages.
Situation cannot remain
The study authors added: “Normally, about one in five people report problems getting their medicines in a typical year. But for families affected by epilepsy, this figure was reported by respondents to be much higher with one in three experiencing problems.
“This shows that shortages may be hitting people with epilepsy harder than others.
“We also discovered something surprising: the medicines people struggled to find weren’t listed nationally as being in short supply. This suggests that some of the problems may be happening within the local supply chain, not just with the manufacturers.”
The researchers warned that medication shortages could mean people miss doses or receive a different brand or form of their medication that may not work in the same way for them.
“What worried us most was that many people were offered different brands or forms of their medicine when the usual one wasn’t available,” Eric explained.
“For epilepsy, missing doses or switching brands unexpectedly can lead to uncontrolled seizures. Some people may also experience new or increased side effects if they are not taking the exact medicine prescribed by their doctor.
“This was happening even with medicines where switching should never occur.
“The results show the current situation cannot remain as it harms patients and causes unnecessary extra stress and work for patients and their carers.”
Serious consequences
Tom Shillito, health improvement and research manager at Epilepsy Action, also an author of the research paper, said: “We know from our own helpline that medicine shortages leave people feeling frightened about what might happen if they can’t get the treatment they rely on.
“Recent inquest findings have shown just how serious the consequences can be when someone is left without their usual medication. Nobody should ever be put in that position.
“We’re urging partners across the system to work together to reduce disruption, and we encourage anyone affected to contact us for clear guidance and support so they feel less alone in navigating these issues.”
The authors suggest that potentially changes are needed at NHS level, healthcare professional level and patient level. The NHS should develop ways to minimise disruption to the supply chain, focusing on the medications which can’t be easily swapped.
Additionally, health professionals need to check whether a medication can safely be switched before recommending alternatives and people should visit different pharmacies if they find their regular pharmacy is out of stock, as they may use different suppliers.
Epilepsy Action has more information on medication switching and you can download the Don’t Sub My Drug leaflet from the website with more information.