By Clare Pelham, Chief Executive, Epilepsy Society
“There’s no plan B.” It’s a familiar statement in the dialogue surrounding climate change and its impact on the planet. But for many people with epilepsy, it’s a daily truth when it comes to medication.
If they don’t get their exact medication, as prescribed – brand, dose, quantity - the consequences can be huge. Consistency is critical, deviation from your prescription is disastrous. One breakthrough seizure can mean losing your driving license and all that implies. Challenges in getting to work. Challenges in doing the school run or taking your mum to her hospital appointment. Challenges just making a simple cup of tea. Have you ever felt real fear when picking up a just-boiled kettle?
Seizures are more than a transient loss of consciousness. They can be life-changing for the person affected and, potentially, for those around them. Which is why medication shortages set in motion a dizzying spiral of anxiety and distress which, on their own, can cause seizures.
In the last year, against a background of continuous shortages, people with epilepsy have hit the headlines as they have struggled to get their medication. One woman travelled 160 miles to get her prescription fulfilled. Another spent £60 on a cab, visiting 11 pharmacies to track down her medication. The stakes are high as pharmacists, often the bearers of bad news, know only too well.
It can take months, sometimes years, for people with epilepsy to have their medication adjusted for optimum seizure control with minimum side effects. Problems with the medicines supply chain are widely attributed to it being both global and complex. But that complexity pales into insignificance compared with fine-tuning a drug to navigate efficiently through the neuronal networks to the point of excitability in the brain’s complex pathways. And to stop seizures.
If the expertise of scientists and drug developers can achieve such a feat of medical ingenuity at microscopic level then surely, at macro level, the worlds of manufacturing, trade, and procurement can ensure that medications are delivered on time, to scale and in the right quantity for those who need them. Literally, how hard can it be?
The Royal Pharmaceutical Society’s report Medicine Shortages: solutions for empty shelves demonstrates that all is possible. It illustrates how a properly resourced national strategy could improve the resilience of the medicines supply chain, preventing and managing medication shortages and putting patients first.
Yes, it needs a collaborative approach but the best minds in the business, including patients, are already on the case. It just needs leadership and commitment to make it happen and, of course, we must look to the Government for that leadership.
We have had many positive conversations and communications with the Health Secretary and his team and we welcome the honest recognition that medication shortages are a problem that needs to be addressed with some urgency.
Health Minister Karin Smyth has assured us that there are “well established tools and processes” to manage shortages when they arise and to mitigate risks for patients. The Department of Health and Social Care is also working to ensure that patients have access to an alternative treatment until their usual product is back in stock.
Which brings me back to the critical issue for many people with epilepsy – there is no plan B. An alternative form of treatment, even the same drug from a different manufacturer, won’t cut it for many of the 630,000 people with epilepsy. And the well-established tools and processes aren’t working when patients are travelling miles and forking out big money to get routine, but life-saving medications - if they can.
Read more about the impact of medicines shortages and the RPS' recommendations for tackling them in our report: Medicines Shortages: solutions for empty shelves.
More on medicines shortages.