A national shortage of epilepsy medication is putting patients’ safety at risk, consultants have said.
Medical professionals are becoming genuinely concerned as ever more frequent supply issues continue to bite tens of thousands of sufferers.
According to the Epilepsy Society charity, over 600,000 people in the UK have the condition, or about one in every 100 people.
Among them is Charlotte Kelly, a mother of two living in London who has had epilepsy for over 20 years. She must take two tablets a day to manage her condition but issues with supply have forced her to start rationing her medication.
Speaking to Sky News, Ms Kelly told us of the fear surrounding the restricted access to the medicate she needs to survive.
“I’m scared. If I’m truly honest, I’m scared knowing that I might not get any medication for a few weeks, or a couple of months, I just don’t know when.
“It’s scary to know that I have to worry about getting hold of medication. I do believe that something needs to happen very quickly because even if it’s pre-ordered there’s no guarantee you’re going to get it.
“The anxiety of worrying about if you’re going to get your medication builds up and the worry alone can cause seizures.”
It’s added worry knowing her chances of having seizures increases her reliance on her 14-year-old daughter who often has to make the 999 calls to get help for her mum.
She was due to get a renewed supply in December to get her through the next two months.
But there’s no guarantee of when any of it will next be in stock.
“I get very, very frustrated. There’s times when I’ve had to call five, six different pharmacies and the more you’re calling, and you’re not hearing what you need to hear.
“You’re getting more and more frustrated and then you’re getting upset and it’s like where do we stand? Epilepsy is a very, very, very common condition.
“Over 600,000 people in the UK alone, have epilepsy. And when but yet we feel like we are just a hidden condition.
“People just don’t understand that if I don’t have my medication I could have multiple seizures, and that could lead to hospitalisation, and at worst case, death.”
Kay Dhillon, a pharmacist in west London, showed me the near-empty cubby hole and cupboard which is usually full of epilepsy medication as she told Sky News she started noticing products were flagging and being out of stock three weeks ago.
She describes it now as being at crisis point.
London pharmacist Kay Dhillon
“It is a crisis. You don’t know how many epilepsy fits or tablets the person can have or how severe their epilepsy is. Because obviously, they’ve been taking it every single day for so many years and it just stops one day, or even if they miss a dose, it’s a big deal.”
Ms Dhillon says she has been given no indication of when the drugs will be back in stock.
She says she’s been managing so far by helping patients access resources shared between four pharmacy branches but says everyone’s supplies are running low.
“It seems like it’s a manufacturing issue. Obviously, patients are asking – how can you not know when it will be back in stock?
“It’s a shame because patients rely on you for this and they shouldn’t have to go looking around for their daily medication.”
Read more:
Rapper Professor Green reveals he suffered a seizure
Soundtracking an epileptic brain – one musician’s story
Free medicinal cannabis to be donated to epileptic children
Speaking to Sky News, Professor Ley Sander, director of medical services at the Epilepsy Society, says the supply concern is not just on the minds of patients but those in the industry too.
“It might be that we need a strategic reserve for storage of drugs, we might have to bring drugs over from other parts of the world to avoid this from recurring.
“We’re not at that point yet, but this is an urgent issue.”
In a statement provided to Sky News, 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 the epilepsy medicine carbamazepine. 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. Through this work, problems with carbamazepine should be resolved by early February.”
It is those like Charlotte who are left bearing the brunt till then.
