Health minister responds to call for review of medicines supply chain

We recently wrote to health ministers Karin Smyth and Stephen Kinnock following ongoing medication shortages which were leaving people with epilepsy struggling to get their prescriptions fulfilled.

A survey earlier this year with other epilepsy charities and Parkinson’s UK showed that 70% of people with epilepsy or Parkinson’s have faced difficulty in accessing their medication. 

Karin Smyth acknowledged previous and existing issues with medicine supply and the impact that this continues to have on people with long-term conditions such as epilepsy. She said the Department of Health and Social Care was working closely with the NHS, the pharmaceutical industry, manufacturers and suppliers to resolve these issues. 

She highlighted some of the key issues that are impacting the medicine supply chain and access to medicine. She said issues were not entirely specific to the UK and included ‘manufacturing difficulties, access to raw materials, sudden demand spikes or distribution issues and regulatory issues’.

The Minister noted that there are ‘well-established processes and tools’ to mitigate issues when they arise including ‘use of alternative strengths or forms of a medicine’.

She said steps the Department are currently taking to mitigate intermittent supply issues with some epilepsy medication include ‘directing suppliers to expedite deliveries’ which has resolved some of these issues. The Minister noted that the Department has fixed supply issues with carbamazepine 100mg/5ml oral suspension and carbamazepine 100mg and 200mg tablets. 

Epilepsy Society responds

Nicola Swanborough, Head of External Affairs at the Epilepsy Society said: “We are very grateful to receive the Minister’s response which acknowledges the problems faced by people with epilepsy in accessing vital medication, and we are pleased to hear how the department of health is addressing the issue across the industry.

“Unfortunately, for many people with epilepsy there is no plan B when their medication is not available. They cannot safely switch between different versions of a drug, even if the active ingredient is the same. This is why it is critical that the global complexities that are contributing to shortages in the UK are resolved at speed. And it is vital to ensure that the impact of shortages on people with epilepsy, including breakthrough seizures, is central to finding a resolution.

“We look forward to working further with the Minister on this issue, particularly around the importance of consistency of supply for people with epilepsy.” 

The current shortage of medication across many health conditions, including epilepsy and Parkinson’s disease, is having a serious impact on people across the country. We continue to campaign on behalf of the people with epilepsy and Parkinson’s who have difficulty accessing medication due to medication shortages and issues in the supply chain. 

Earlier this year we carried out a survey of almost 1,500 people affected by medication shortages. A staggering 70% of respondents have had difficulties getting vital medication over the past year. 55% had to visit multiple pharmacies before getting hold of their medication and 66% were only given a fraction of the amount that was on their prescription until more supplies were available.

For both people with epilepsy and those with Parkinson’s, around half were given a different brand or version of their medication, and 40 per cent saw a worsening of symptoms that they attributed to the stress of trying to get their prescription filled. Nearly 40 per cent of respondents with epilepsy reported having seizures induced by having to switch or skip medication, and 36 per cent of respondents with Parkinson’s said that facing this difficult choice led to their symptoms worsening.

People with epilepsy risk breakthrough seizures if they don’t have a continuous supply of medication. In severe cases, seizures can be fatal. For people with Parkinson’s, skipping medication or even delaying dose times can lead to a worsening of symptoms and serious side effects.

In order to ensure we can find a solution to this critical issue we are in communication with the Department of Health and Social care as we work tirelessly, calling for a review of the medicine supply chain. We are also writing to the Secretary for Health and Social Care, Wes Streeting, calling for an urgent review into the medicine supply chain, in collaboration with Epilepsy Action, Parkinson’s UK and SUDEP Action. 

You can support our call for a review of the medicine supply chain by writing to your local MP.