Epilepsy, like many long-term health conditions, comes with certain risks. The medication you take for your epilepsy plays a really important role in reducing your risks and helping to control your seizures. But sometimes shortages of medications happen and this can impact on the medication you take.
Medicine shortages seem to be happening more often and could become more likely with big national changes like Brexit. It is important to know if or how your current medication care may be affected by medication shortages, and what you should do if this happens to your medications. As the tagline for our Prevent21 campaign states: Knowledge saves lives.
Shortages of medications have been in the news recently (see also The Guardian - Nov 2019), and some people with epilepsy have been finding that they have had trouble getting their usual prescription. Some people with epilepsy are being given different types or strengths of their medication instead. This is worrying as we know how important it is for people with epilepsy to be able to take their medication regularly and as prescribed by the clinician who helps to manage their epilepsy.
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 in case of national or local shortages (in case a major shortage happens as a result of Brexit for example). 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.
Government are currently planning on introducing Serious Shortage Protocols, where 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 changing of medication prescriptions during a shortage, could have significant impacts on their lives.
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. We know that many clinicians are also having to work even harder to ensure their patients get the medication they have been prescribed; adding to their already stretched workloads.
These shortage protocols are especially worrying when pharmaceutical companies’ stockpiling plans are compared to the Medicines and Healthcare Products Regulatory Agency (MHRA) categories for epilepsy medication, 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 could have long lasting impact on people with epilepsy or anyone needing medication for a long-term health condition.
Find out more about this issue and what a Serious Shortage Protocol means here:
UK Medicines Shortages - Further Information
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 the clinician who helps manage their epilepsy, 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 so 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:
- 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.
- Understand your epilepsy risks - remember that Knowledge saves lives. Check out our free informationand 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.
- You have the right to question any medication change you are facing and request this is checked with, or that you can have a discussion with, your usual prescribing clinician before accepting the alternative medication. Your usual prescribing clinician can provide reassurance as to whether the change is appropriate for you or not, based on your full medical history.
- Write to your local MP or local Councillor 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.
- 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?
- 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.
- 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).
- Write to your local MP or local councillor 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.
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 the issue of medication shortages, and is asking for clarity on what plans Government is putting in place to keep people with epilepsy safe if there is a shortage. We are gathering information and campaigning 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: Flagged the dangers of allowing a Serious Shortage Protocol (SSP) to be used on epilepsy medications directly with the Secreatary of State for Health and Social Care and via the Sunday Times.
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. In the legal changes Government have made to the Human Medicines Regulation, it acknowledges Epilepsy is a high-risk condition where medicines may need to be prescribed need to be prescribed by brand for clinical reasons. They have said "in these cases, patients would always be referred back to the prescriber for any decision about their treatment before any therapeutic or generic alternative is supplied" (Explanatory Memorandum No.62 to the Human Medicines Regulation). However, this doesn't protect from other changes eg:strength (2x50mg instead of a 100mg)
- Our supportive MPs have asked questions to Government seeking confirmation Government's plans regarding medication shortages and the SSP, asking for details which show there is a plan for a continuous supply of epilepsy medications. Read some of our MP questions these here. 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.
- 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 scrapped and have to be redone following proper processes.
- 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.
MARCH 19: MPs rally around the Epilepsy Coalition's concerns regarding Serious Shortage Protocols and the risk they pose to people with epilepsy during a Westminster Debate.
MAY 19: The judicial review against Government's Serious Shortage Protocols comes to an end, but the epilepsy coalition vows to continue fighting to ensure patient safety is at the heart of any Brexit planning.
SEPTEMBER 19: In light of the deeply concerning release of Governments 'Yellowhammer' Brexit plans - SUDEP Action continues to lead a coalition on the concerns facing people with epilepsy facing medication shortages via 2 public statements to Government.