Epilepsy charity issues medicines supply warning

Author: Mark Gould

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The Epilepsy Society is calling on health and social care secretary Matt Hancock to commission an urgent review of the medicines supply chain as it has found evidence that patients are being forced to trawl around pharmacies in search of their drugs.

In the last few months the charity says it has seen a steep rise in the number of people who are struggling to get hold of medication which helps to keep their seizures under control. This is the latest peak in an issue which big pharma has failed to resolve for more than a decade, it says.

Although uncertainties around Brexit have thrown a spotlight on medicines shortages, the charity says the problem has been ongoing for more than a decade with problems in the supply chain being blamed for low levels of stock.

The charity's medical director, Ley Sander, professor of neurology at University College London, has called for greater openness and transparency in communicating problems around medicines shortages. He has written an article for people on how they can manage if there is a shortage of their medication.

"It is vital that clinicians have the most up to date information around any supply issues so that we can discuss these with our patients and forge a plan together," he said.

“Epilepsy is a long-term health condition that can be very difficult to manage – it can often take many years to fine-tune a person’s treatment to ensure maximum seizure control with minimum side effects. It is vital that doctors are fully informed of any issues around medicines supplies so that we can make plans to provide the best treatment available for our patients.”

“Fundamental to dealing with this issue is the need for transparent and honest communication. It is vital that clinicians have the most up to date information around any supply issues so that we can discuss these with our patients and forge a plan together," he added.

And the charity says the anxiety and stress caused is putting people with epilepsy at greater risk of seizures, with escalating numbers contacting its Helpline or online enquiries. The charity's chief executive Clare Pelham has asked Mr Hancock to commission a review to tackle this underlying issue in the supply chain and get a better deal for people with epilepsy and other long-term health conditions.

“Without a consistent supply, a breakthrough seizure can occur meaning that a person with epilepsy may lose their licence, lose their job and lose their quality of life," she said.

“It is simply not good enough for drugs manufacturers to say ‘production issues’ or ‘just-in-time manufacture problems’ and shrug their shoulders whenever a shortage occurs. People with epilepsy deserve better," she added.

Ms Pelham said the Society would be delighted to work with Mr Hancock and the pharmaceutical industry to achieve consistent and reliable drug supplies for the people it supports.

“It’s not a great deal in life to have to rely on regular medication to maintain your quality of life. Surely the least that we can do - government, charities and the pharmaceutical industry - is to work together to ensure that the supply of this essential medication is reliable every day, every week, and every month-year in and year out. So that when the Brexit spotlight has moved on, people with epilepsy will be in a much better place."

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