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Brexit & managing epilepsy risks


Brexit is rarely out of the news - but what impact could it have on people living with epilepsy or other health conditions? 

With so many stories in the news about Brexit, it can be easy to dismiss them, especially given the emotions raised by many of them. But among the headlines are pieces of information that are important, especially for people who have health conditions such as epilepsy. Given that living with a health condition comes with certain risks, epilepsy included, it is important to know if or how your current care may be affected by these huge national changes. As the tagline for our Prevent21 campaign states: Knowledge saves lives


There are many uncertainties surrounding Brexit at the moment and information changes almost daily. But at SUDEP Action we know that regardless of what is going on nationally, how important it is for people with epilepsy to get the best care possible, and the terrible consequences of this not happening.

It's because of this, that we are leading a group of organisations (an 'Epilepsy coalition') to keep an eye on issues which may affect the safety of those with epilepsy which could put lives at risk. Raising these issues with Government, and pushing them for clarity and answers that are urgently needed, to make sure that whatever happens with Brexit, that people with epilepsy, their families and clinicians have information available to understand how Brexit may affect them & can put steps in place to keep their care happening as smoothly as possible. 

What do we know so far?

The Government has asked Pharmaceutical companies to ensure they have plans in place so that people with health conditions, such as epilepsy, can access their medications (eg: if Brexit causes delays in medications made outside of the UK from reaching us).

The Government stressed a 6-week supply of extra medications was needed, just in case. But there are already issues about the availability of some medications – meaning there may already be shortages of some medications, without adding any additional Brexit-related shortages into the mix. 

Add to this the Government’s plan to introduce Serious Shortage Protocolswhere pharmacists, (who may not be aware of the potentially deadly risks linked to epilepsy & how to reduce these), will be able to substitute medications for a similar alternative is there is a shortage - without having to discuss this with the clinicians who originally prescribed it or their patient, to check the change won't negatively impact on their condition. This creates a worrying picture for people with epilepsy, their families & clinicians. For those living with multiple health conditions, needing multiple medications, these shortages and potential switching of medications during a shortage, could have significant impacts on their lives, even if epilepsy medications are exempt from any shortage protocols.

It will also become increasingly more expensive for Healthcare Trusts to access medication that is in short supply, increasing the burden on healthcare teams and meaning there will be less funding available for other services patients need to manage their condition. 

This is especially worrying when pharmaceutical companies’ plans are compared to the Medicines and Healthcare Products Regulatory Agency (MHRA) categories for epilepsy medication (below), which categorise medications to show where changes in supply (ie: switching from a 'brand' to generic) could be harmful eg: for some people with epilepsy, moving from a brand version of their medication to a generic version, can impact on seizure control or cause side effects, which not only impact on quality of life but can be dangerous to some who may already be at an increased risk of epilepsy death.

However this issue also goes far beyond Brexit - as it is just one event which may cause a shortage of medications. The Serious Shortage Protocols the Government has passed into law, can be activated at any time at the descretion of the Minister; so this issue goes far beyond Brexit too. 

What have we done to help keep people with epilepsy safe?

SUDEP Action is working with other epilepsy and neurology organisations, as well as expert clinicians to unpick this issue, gather information and campaign for careful plans to be put in place to make sure people with epilepsy are able to live safely; regardless of what is happening nationally, within Government, and in relation to Brexit. So far we have:

December 18:

January 19:

  • Expressed our concerns via the Sunday Times and had verbal confirmation from Government that epilepsy will be exempt from any SSP that may occur if there is a medication shortage (either due to Brexit or because of other issues which may cause a shortage). However, this has yet to be explicitly confirmed in writing other than acknowledgement that epilepsy is a 'high-risk condition' that would not be impacted on (but we have no clarity on what steps government are taking to ensure a continuity of medication, which regardless of an exemption, could still impact on people with epilepsy or other conditions).
  • Our supportive MPs have asked questions to Government seeking confirmation the epilepsy is exempt from the SSP, and what plans Government has in place to make sure there is a continuous supply of epilepsy medication regardless of the Brexit outcome. Read these here. We plan to ask more questions as this protocol relates to any shortages, not just Brexit ones. We need to know the Government's plans for: implementing the SSP, sharing information to patients/clinicians, and how any shortage protocols will be reviewed/monitored once active. 
  • Read Government's consultation document about the issue of SSP (which only a few voluntary organisations or clinicians had seen), and the Statutory Instrument which give some details on how this protocol may work. However, these documents do not give us the clarity or reassurances needed that appropriate plans and safeguards are in place to protect patients.
  • Continued to voice our concerns over the lack of clarity over these proposals and the permanent legislation changes made without proper consultation via The Guardian

February 19:

  • Worked with a supportive group of MPs to help them file a 'Prayer to Annul' against the legislations changes Government have made to the Human Medicines Regulation, without proper consultation or planning on how to keep people with long-term health conditions such as epilepsy safe. With MP support this prayer means the Statutory Instument (that has been changed to bring in the shortage protocols) will have to be debated and properly scrutinised by Parliament. It may also mean the changes are invalidated. 
  • SUDEP Action are now also supporting the Good Law Project in bringing a Judicial Review against Government because of how they have handled these permanant legislation changes. This is a serious step, and one we have not taken lightly; but feel that action must be taken to make sure that people living with epilepsy & other health conditions are not put at risk because of poor planning and short timescales. 

I have epilepsy - what should I do?

Despite this information, it is very important the people with epilepsy continue to take their medication as prescribed by their clinician and avoid stocking up on extra medication because of this news (as this could make any shortages worse and not taking your medication correctly is a risk factor for epilepsy death and could increase your risk of seizures). Because of these possible delays, you should however make sure you leave enough time to get new prescriptions before your current stock of medication runs out, as it could take a little longer than usual. 

Feeling at risk and worried about how your life could be affected by this, is of course, worrying, but there are steps you can take to help you stay in control of your condition & to know what actions you should take:

  1. Set a reminder at least 1 week before you need to file a repeat prescription (you'll need to allow more time if you need to see a clinician to get a prescription) - you should aim to still have some medication left to take when your new prescription arrives.  
  2. Understand your epilepsy risks - remember that Knowledge saves lives. Check out our free information and EpSMon app so you know what may currently be risky for you, and what steps you can take to reduce them and live well with your epilepsy. 
  3. Write to your local MP to share your concerns and ask them to represent your views in Parliament. Knowing their constituents concerns helps MPs share examples and push for change, so your views could help them to work with us to make a difference in keeping people with epilepsy safe. Our template letter can help you with this.
  4. If you have epilepsy and are worried about this, there are a number of epilepsy helplines who you can contact, and you may wish to speak to your clinician at your next appointment; though remember that just like many members of the public, not all clinicians will be aware of these issues at the moment. 

I'm a clinician - what should I do?

  1. Review your patients' epilepsy risks - helping people with epilepsy to lower any epilepsy risks they may have which are known risk for mortality can help reduce their seizures and gain better control of their condition. Our SUDEP & Seizure Safety Checklist is a quick tool to help you with this. 
  2. Speak openly to your patients about this issue and the importance of them being proactive to reduce risks in this context (ie: medication adherance, requesting medication in plenty of time, self-managing epilepsy risks). 
  3. Write to your local MP to share your concerns and ask them to represent your views in Parliament. Knowing their constituents concerns helps MPs share examples and push for change, so your views could help them to work with us to make a difference in keeping people with epilepsy safe. Our template letter can help you with this.