Anti-seizure medication shortage: Katharina’s story

Katharina’s daughter was diagnosed with epilepsy when she was 10 years old. She shares how epilepsy has impacted her daughter and the difficulties sourcing her daughter’s anti-seizure medication.


Can you tell us a bit of background on how your daughter was diagnosed with epilepsy?

She experienced her first seizure in December last year. We all hoped it would be a one-off.

Unfortunately, in April she had a second one. A few days later, she got invited to an EEG scan. Following that scan she got diagnosed.


How did you feel when your daughter was diagnosed with epilepsy?

We were relieved to know what caused the seizures. But, the thought that she potentially has to be on medication for the rest of her life was upsetting.


What type of seizures does your daughter have and how does it affect her?

She experienced one tonic-clonic seizure. The second one was different. The main issue then seemed to be her struggling to breathe.


What impact has epilepsy had on your daughter?

I think, the main impact for her is that she has to take medicine twice a day. And she is scared that she will have another seizure.


How difficult has it been to source your daughter’s anti-seizure medication?

It has been a nightmare. Due to miscommunication between the GP and the Neurology department, and more recently the supply issue for her medication.

She can’t just take tablets, therefore relies on the oral solution. We managed to source it from the hospital pharmacy and a bigger pharmacy, so far.


How has those struggles to source your daughter’s medication impacted her and your family?

It has created immensely stressful days for all of us.


What would you like to see happen so there are no medication shortages in the UK?

I don’t know what is the reason behind those shortages. The medication we have at home right now appears to have origin in the Netherlands.

Maybe the UK needs to work closer with other countries.


Is there anything you would like to add?

I hope the shortage problem will be solved as soon as possible, as we shouldn’t really have to worry about the treatment of such a common health issue.

If you would like to share your experiences of living with epilepsy, please email David Coates our Communications Officer at dcoates@epilepsyscotland.org.uk or call 0141 427 4911.