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of everyone affected by epilepsy

Brexit and epilepsy – where are we now?

14 Aug 2019

The recent change of Prime Minister in the UK is relevant to people with epilepsy for many reasons. One of the most important of these is Brexit.

Since entering Downing Street, Boris Johnson has made it clear his priority is to ensure Britain leaves the European Union (EU) on 31 October 2019. This means the government is preparing for Britain to leave the EU on 31 October, deal or no-deal.

Epilepsy Action published information about what a no-deal could mean for people with epilepsy in August 2018. Much of this is still relevant today. It’s also worth looking at our previous post about Serious Shortage Protocols (SSPs). The Serious Shortage Protocol sets out how the government would deal with a ‘serious shortage’ of any particular medicine, including antiepileptic drugs (AEDs).                                                                                            

It’s important to note Boris Johnson has repeatedly said he is committed to trying to reach a new agreement with the EU before the 31 October. The reality is that time is running out and it seems as if a potential no-deal Brexit is increasingly likely.

From listening to people with epilepsy it’s clear that many want to know how a no-deal Brexit might affect the supply of vital medicines. 

In recent weeks Epilepsy Action has been involved in conversations with the Department of Health and Social Care and with NHS England about these issues. These conversations have included open discussions about plans to ensure people with long-term conditions are able to continue to access vital medicines.

Steps being taken by the government include stockpiling medicines and additional freight capacity including air and sea routes that avoid the Dover-Calais crossing. Commitments have also been made that medicines and medical supplies will be prioritised in the event of any delays at the border.

The government have made £434 million available to help fund these efforts and try to ensure that medicines continue to be available in any circumstances. These are all important steps to help ensure that people with epilepsy are not put at an increased risk in the event of a no-deal Brexit.  

Epilepsy Action remains concerned about the potential impact of a no-deal Brexit on people with epilepsy. While there has been some progress around how the government engages with patient organisations on this issue, there is still much more to do.

Talking to patient organisations is important but it’s even more vital for the government to communicate directly with patients. If supplies of medicines are affected people must know what to do, this is even more important for people with epilepsy.

While we welcome the efforts of the government – we remain concerned that a potential no-deal Brexit could negatively affect people with epilepsy. Over 75% of UK medicines have an EU touchpoint, this number is likely to be similar for anti-epileptic drug (AEDs). People with epilepsy cannot be put at an increased risk, deal or no-deal.

We will continue to engage critically and constructively with the government on this issue and ensure that the views of people with epilepsy are at the heart of these discussions. We will also let you know whenever new and relevant information becomes available.

For free and impartial advice and information on epilepsy related issues you can visit our website or call our Freephone Helpline on 0808 800 5050.

Comments: read the 16 comments or add yours

Comments

Through my work I have met young people who,have privatelymedication routinely brought for them as individuals, from a Europe. In case of no deal I have aniety for these members of society.

Submitted by judy olby on

I have been suffering with epilepsy for 22 years.I have to take a mixture of meds every day and night.I take Pregabalin,Epilim and Clobazam.So does it mean there will be a shortage of these meds.

Submitted by Michael downing on

Well done to get this though as I myself at the moment ongoing new meds and not good side affect at that .

Submitted by Wendy Woodland ... on

When my medication was changed recently, I had my first Tonic-clonic seizure in 18 years. I am very scared at the thought of not being able to get hold of my epilim. Each seizure is life changing, and can be life threatening. 4

Submitted by Julie Turner on

Is there somewhere I can find out which Meds might be effected by us parting ways? I take them regular but have no idea where they come from.

Submitted by Terry Denman on

If you look at the leaflet in your medicine box, it will tell you where your drugs are manufactured. I take two types of Epilim tablets, and both are made in Spain.

Submitted by Gwyn Evans on

Dear Terry,

Thank you for your question.

We’re not aware of a list of exactly which epilepsy medicines could be affected by Brexit. The information above is the most up to date information we have about this issue. We will update this blog as soon as we have any further information.

Regards,

Ashley  

Epilepsy Action Helpline Team 

Submitted by Ashley - Epilep... on

Thank you for speaking on our behalf.

I know that changing brands increases my seizures. Please let me know if there is anything I can do to help persuade people of the need to maintain medical supplies.

Submitted by Roshana Langdon on

I find the idea of any drug shortages, be that anti epileptic or
other serious long term illnesses.
The idea that my epilepsy drugs might be in short supply in the coming weeks or months is truly horrifying.
People with epilepsy must protest louder or ensure we leave Europe with some kind of deal.

Otherwise the alternative of the situation in shortages of our drugs is highly unacceptable, and unforgivable.

Submitted by Jill Ferguson on

Short supply would be the end I can't go without my medication I am a mum n a granny soon n have fit's when taking my medication so without isn't worth thinking about xx

Submitted by Paula Wilkinson on

I have been seizure free for over 30 years but I understand that if I cannot take my medication or that it is changed I will have to hand in my driving licence. I understand the risk of having a seisure is
almost 50% this is why I have remain on my medication for so long.

Submitted by Christine Birch on

My Husband has been Epileptic for over thirty years and takes Epilim Chrono. When there was a shortage of Epilim Chrono 500 I rang 17 different pharmacies in our area and had no success getting them so our GP suggested putting him on 4x250 daily. I had a conversation with him regarding what would happen in the event of Brexit and he assured us both that Matt Hancock Health Minister had made provisions regarding meds for people with long term medical problems, Epilepsy was mentioned.. I understand the worry that this is causing but that is one of the main causes of seizures, so I suggest we stop worrying, I asked my Pharmacist regarding the possibility of buying extra meds to get us through the teething period and he suggested contacting customer services at the manufacturers of Epilim. I did this and it is possible to do this. In America it is a common practice. I cannot believe that families will be left struggling to get the meds that their loved ones need and maybe we need to be making appointments with our GP to be prescribed extra meds.

Submitted by Alison Brown on

Waiting for coroner's report

Submitted by Carolyn Hallsworth on

I am deeply concerned about the potential shortage of medication.

I suffer from Servere Epilepsy, at my worse I would have into 11 seizures a day

Its taken years to gain control BUT I am on a very high dose of phenobarbital and also have a VNS

My VNS goes off every 3 minutes BUT also detects potential seizures and goes off automatically duecto a sudden increase in my heart rate

At my last check up, just 3 weeks ago, I was a little taken aback when my stats were checked and it's going off automatically 8 times a day on average due to detecting potential seizures that's on top of the fact it goes off every three minutes

So even though I'm seizure free I have proof that my brain in constantly attempting to have one

So the fact that I may not be able to take my very high dose, 210mg ( higher than it states the most should be BUT I'm monitored well ) is scary

I'm not scared of having a seizure, I'm a fighter and will cope

I'm scared of death or worse ending up brain damaged

As I understand that is what I will be at risk off if I can't be weened off my medication and suddenly just stop taking it

I'm seeing my neurologist in the coming weeks so I know what to do and what will happen if I can't get hold of my medication

Especially considering the fact that I'm allergic to its sister drug so that's not even an alternative

Its scary , stressful and I'm already having panic attacks worrying over this.

I understand we have to keep as calm as possible because stress can trigger seizures however under the circumstances it's hard

Kindest regards
Rachel

Submitted by Rachel on

Whilst most of the comments here relate to supply of AEDs in UK/Europe, we in Australia seem to be facing the first wave of shortages. Right now there is a nation-wide out of stock of Mysoline (an important drug for both epilepsy and Parkinson's Disease). This is because the only approved supplier is in the UK. This shortage is expected to carry through to August 2020! The only reason given on the Australian Govt regulator's (TGA) is "manufacturing". After reading the above it seems that the UK supplier has been told to reserve stocks for its domestic needs due to the uncertainty of Brexit.

Submitted by Tony Chew on

I live in Spain. I tried to get my repeat prescription of Mysoline unfortunately this is not available
and I have been urged to go back to my doctor and ask for an alternative.

Submitted by Jeanette Haycock on
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