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We publish a newsletter which is sent to all members, doctors surgeries, libraries, national and local politicians. The newsletter includes details of our events together with news about advances in the treatment of epilepsy and changes in benefits available to members. To see the latest edition  view here

Contingency plans for epilepsy medications in case of a no-deal Brexit

In August 2018, the Government asked pharmaceutical companies to ensure they have a minimum six week stockpile of prescription-only and pharmacy-only medicines in case of potential delays at UK borders after Brexit on 29 March 2019.

We are informed by Epilepy Spociety that theyhave contacted pharmaceutical companies in the UK to find out what their individual contingency plans are. Their responses are detailed in the  table below.

Stockpiling medicines at home

Epilepsy Society's Medical Director, Professor Ley Sander has also advised people with epilepsy not to stockpile medication themselves.

"There is a lot of anxiety about supply of medication post Brexit and some people are finding ways to try to stockpile medicines themselves," he said.

"We understand people's concerns, however this has the potential to create a shortage of medication itself. It is important for everyone to stay calm and follow their normal routine when it comes to getting a repeat prescription.

"The contingency plans put in place by the Department of Health and Social Care are the most effective way to ensure that everyone has a consistent supply of their medication."

Serious shortage protocol

The Government has also confirmed that epilepsy medicines will be exempt from its serious shortage protocol. This will give pharmacists power to dispense alternative drugs if those prescribed by GPs are in short supply at any time, including during the possibility of a 'no-deal Brexit' scenario after Britain leaves the EU.

If there is a shortage of a particular epilepsy medication, clinicians would advise the most appropriate course of action. Where necessary, the Department of Health and Social Care would seek to access the medication from an alternative source.

Brexit contingency plans for epilepsy medications from pharmaceutical companies

Acetazolmide tablets

Company: Crescent Pharma

Dosage: 250mg

Contingency Plan: No concerns. This particular drug is manufactured wholly within the UK and therefore, they do not anticipate any concerns in regard of the manufacture and supply of this drug.

Briviact (briviracetam) oral solution

Company: UCB

Dosage: 10mg/ml 

Contingency Plan: "Ensuring patients avoid any disruption to the supply of their medicines is a primary priority for UCB, and as a precautionary measure UCB is increasing stockholding of our core medicines in the UK to cover a 2-month supply period for all products, and a 3-month supply period for many of our medicines to mitigate any potential disruption in a “hard” / “no deal” Brexit scenario.

For UCBs’ AEDs there will be a 2 month supply cover for Keppra (Levetiracetam) in the UK, and a 3-month supply period for Briviact (Brivaracetam), Vimpat (Lacosamide) and Nootropil (Piracetam).

The Medicines Supply Contingency Planning Department for the Department of Health has requested all UK pharma companies to increase their stock holding by 6 weeks (on top of their existing safety stock) to cover the impact of a ‘hard’ Brexit, which UCB has complied with. In addition, the UK Government announced that in the event of a “hard” / “no deal” Brexit many important elements and processes relating to the supply chain for medicines coming to the UK from the EU will remain the same as they are today after March 29th 2019, and that the Government would give pharmaceutical manufacturers at least 2 years notice before any proposed changes to this would be considered.

Because avoiding disruption to patients is a key priority for UCB, we continue to actively and routinely engage UK Government to encourage the development of policies that will avoid disruption to UK patients receiving their medicines."

Carbagen (carbamazepine) tablets

Company: Mylan

Dosage: 100mg, 200mg and 400mg

Contingency Plan: "Our official position regarding the events you have stated is being determined as we speak. Once we have an official statement this will be communicated".

Updated information: Mylan have informed the DHSC that the following preparations of Carbagen (carbamazepine) will be unavailable until mid-late 2019. The affected products are listed below:

Patients currently prescribed Carbagen tablets by brand will therefore need to be switched to an alternative brand of carbamazepine tablets during this time.

Carbagen prolonged release (carbamazepine) tablets

Company: Mylan

Dosage: 200mg and 400mg

Contingency Plan: "Our official position regarding the events you have stated is being determined as we speak. Once we have an official statement this will be communicated".

Clonazepam oral solution

Company: Rosemont Pharma

Dosage: 0.5mg/ml and 2mg/5ml

Contingency Plan: "We do not anticipate any problem with the supplies."

Clonazepam oral solution

Company: Thame Laboratories

Dosage: 0.5mg/5ml and 2mg/5ml

Contingency Plan: "We do not anticipate any supply issues with Clonazepam 0.5mg/5ml and 2mg/5ml Oral Solution with either outcome of Brexit."

Convulex (valproic acid) tablets

Company: Gerot Lannach (Pfizer UK is the distribution partner)

Dosage: 150mg 

Contingency Plan: "At this moment I see good coverage for the market . And no issue with supplies of Convulex. I am coordinating between the market and the supplier and will keep you updated".

Desitrend (levetiracetam) granules

Company: Desitin Pharma

Dosage: 250mg, 500mg and 1000mg

Contingency Plan: Desitin Pharma has in place plans to manufacture and hold in the UK, by the beginning of March 2019, 6 months' safety stock of anti-epileptic medication.

Desitrend concentrate solution for infusion

Company: Desitin Pharma

Dosage: 100mg/ml

Contingency Plan: Desitin Pharma has in place plans to manufacture and hold in the UK, by the beginning of March 2019, 6 months' safety stock of anti-epileptic medication.
 

Diacomit (stiripentol) capsules

Company: Biocodex

Dosage: 250mg and 500mg

Contingency Plan: Biocodex have said there won’t be any problem with the supplies of Diacomit.

Diacomit (stiripentol) sachets/powder

Company: Biocodex

Dosage: 250mg and 500mg

Contingency Plan: Biocodex have said there won’t be any problem with the supplies of Diacomit.

Epanutin (phenytoin) in oral suspension

Company: Pfizer

Dosage: 30mg/5ml

Contingency Plan: "In order to minimize any potential patient impact we have undertaken work to ensure we can continue to supply in the EU and the UK covering all Brexit scenarios.  We have carried out detailed assessments of the supply of all our medicines with the focus on ensuring we will continue to have them available for our patients.  Due to the long lead times we have in our supply chains, and in the interests of all patients across Europe, we are asking the EU and the UK to reach appropriate arrangements for alignment and cooperation for medicines regulation and supply, and to support these alongside other elements to foster longer-term regulatory continuity between the EU and UK".

Epanutin (phenytoin) chewable infatabs

Company: Pfizer

Dosage: 50mg

Contingency Plan: "In order to minimize any potential patient impact we have undertaken work to ensure we can continue to supply in the EU and the UK covering all Brexit scenarios.  We have carried out detailed assessments of the supply of all our medicines with the focus on ensuring we will continue to have them available for our patients.  Due to the long lead times we have in our supply chains, and in the interests of all patients across Europe, we are asking the EU and the UK to reach appropriate arrangements for alignment and cooperation for medicines regulation and supply, and to support these alongside other elements to foster longer-term regulatory continuity between the EU and UK".

Epilim (sodium valproate) liquid

Company: Sanofi

Dosage: 200ml/5ml

Contingency Plan: "Sanofi welcomes the UK Government’s guidance in the event of no deal in the Brexit negotiations published on 23 August. Sanofi is confident that its existing contingency plans will ensure that people in the UK can access the treatments they need after the UK leaves the European Union. However, we have reviewed our stockpiling plans to meet the Government’s specific guidance to increase UK stock by 6 weeks over existing arrangements".

Epilim (sodium valproate) syrup

Company: Sanofi

Dosage: 200ml/5ml

Contingency Plan: "Sanofi welcomes the UK Government’s guidance in the event of no deal in the Brexit negotiations published on 23 August. Sanofi is confident that its existing contingency plans will ensure that people in the UK can access the treatments they need after the UK leaves the European Union. However, we have reviewed our stockpiling plans to meet the Government’s specific guidance to increase UK stock by 6 weeks over existing arrangements".

Epilim (sodium valproate) gastro and crushable tablets

Company: Sanofi

Dosage: 200mg and 500mg

Contingency Plan: "Sanofi welcomes the UK Government’s guidance in the event of no deal in the Brexit negotiations published on 23 August. Sanofi is confident that its existing contingency plans will ensure that people in the UK can access the treatments they need after the UK leaves the European Union. However, we have reviewed our stockpiling plans to meet the Government’s specific guidance to increase UK stock by 6 weeks over existing arrangements".

Epilim Chrono (sodium valproate) controlled release tablets

Company: Sanofi

Dosage: 100mg

Contingency Plan: "Sanofi welcomes the UK Government’s guidance in the event of no deal in the Brexit negotiations published on 23 August. Sanofi is confident that its existing contingency plans will ensure that people in the UK can access the treatments they need after the UK leaves the European Union. However, we have reviewed our stockpiling plans to meet the Government’s specific guidance to increase UK stock by 6 weeks over existing arrangements".

Epilim Chronosphere (sodium valproate) sachets

Company: Sanofi

Dosage: 50mg, 100mg, 250mg, 500mg, 700mg and 1000mg.

Contingency Plan: "Sanofi welcomes the UK Government’s guidance in the event of no deal in the Brexit negotiations published on 23 August. Sanofi is confident that its existing contingency plans will ensure that people in the UK can access the treatments they need after the UK leaves the European Union. However, we have reviewed our stockpiling plans to meet the Government’s specific guidance to increase UK stock by 6 weeks over existing arrangements".

Episenta (sodium valproate) capsules

Company: Desitin Pharma

Dosage: 150mg and 300mg

Contingency Plan: "Desitin Pharma has in place plans to manufacture and hold in the UK 6 month's safety stock of anti-epileptic medication by the beginning of March 2019."

Episenta (sodium valproate) granules

Company: Desitin Pharma

Dosage: 500mg and 1000mg

Contingency Plan: "Desitin Pharma has in place plans to manufacture and hold in the UK 6 month's safety stock of anti-epileptic medication by the beginning of March 2019."

Episenta (sodium valproate) solution for injection or infusion

Company: Desitin Pharma

Dosage: 100mg/ml

Contingency Plan: "Desitin Pharma have in place plans to manufacture and hold in the UK 6 month's safety stock of anti-epileptic medication by the beginning of March 2019."

Epival (sodium valproate) tablets

Company: Gerot Lannach

Dosage: 300mg

Contingency Plan: "Our distribution partner, Chanelle Medical UK Ltd, have informed us that they have planned for their stock at Brexit to give six months coverage at average demand" - Lisa Kock-Stuppnik, Marketing and Sales International at Gerot Lannach.

Ethosuximide capsules

Company: Essential Pharma

Dosage: 250mg 

Contingency Plan: “Oral preparations of ethosuximide will remain in continued supply before and after the 29th March 2019 Brexit date; confirmed by manufacturer”.

Ethosuximide syrup

Company: Essential Pharma

Dosage: 250mg/5ml

Contingency Plan: “Oral preparations of ethosuximide will remain in continued supply before and after the 29th March 2019 Brexit date; confirmed by manufacturer”.

Frisium (clobazam) tablets

Company: Sanofi

Dosage: 200mg, 300mg and 500mg

Contingency Plan: "Sanofi welcomes the UK Government’s guidance in the event of no deal in the Brexit negotiations published on 23 August. Sanofi is confident that its existing contingency plans will ensure that people in the UK can access the treatments they need after the UK leaves the European Union. However, we have reviewed our stockpiling plans to meet the Government’s specific guidance to increase UK stock by 6 weeks over existing arrangements."

Fycompa (perampanel) tablets

Company: Eisai

Dosage: 2mg, 4mg, 6mg, 8mg, 10mg and 12mg

Contingency Plan: "The Eisai stock levels are well above the levels that were requested by the Government of six weeks."

Gabitril (tiagabine) tablets

Company: Teva UK

Dosage: 5mg, 10mg and 15mg

Contingency Plan: "We are in very close contact with all the relevant authorities and our aim is to ensure that medicines continue to be available without disruption after Brexit. In the meantime, we remain a strong partner to the NHS and are committed to supplying the UK and the patients who depend on us."

Inovelon (rufinamide) tablets

Company: Eisai

Dosage: 100mg, 200mg and 400mg

Contingency Plan: "The Eisai stock levels are well above the levels that were requested by the Government of six weeks."

Inovelon (rufinamide) oral suspension

Company: Eisai

Dosage: 40mg/ml

Contingency Plan: "The Eisai stock levels are well above the levels that were requested by the Government of six weeks."

Keppra (levetiracetam) oral solution

Company: UCB Pharma

Dosage: 100mg/ml

Contingency Plan: "Ensuring patients avoid any disruption to the supply of their medicines is a primary priority for UCB, and as a precautionary measure UCB is increasing stockholding of our core medicines in the UK to cover a 2-month supply period for all products, and a 3-month supply period for many of our medicines to mitigate any potential disruption in a “hard” / “no deal” Brexit scenario.

For UCBs’ AEDs there will be a 2 month supply cover for Keppra (Levetiracetam) in the UK, and a 3-month supply period for Briviact (Brivaracetam), Vimpat (Lacosamide) and Nootropil (Piracetam).

The Medicines Supply Contingency Planning Department for the Department of Health has requested all UK pharma companies to increase their stock holding by 6 weeks (on top of their existing safety stock) to cover the impact of a ‘hard’ Brexit, which UCB has complied with. In addition, the UK Government announced that in the event of a “hard” / “no deal” Brexit many important elements and processes relating to the supply chain for medicines coming to the UK from the EU will remain the same as they are today after March 29th 2019, and that the Government would give pharmaceutical manufacturers at least 2 years notice before any proposed changes to this would be considered.

Because avoiding disruption to patients is a key priority for UCB, we continue to actively and routinely engage UK Government to encourage the development of policies that will avoid disruption to UK patients receiving their medicines."

Keppra (levetiracetam) tablets

Company: UCB

Dosage: 250mg, 500mg, 750mg and 1000mg

Contingency Plan: "Ensuring patients avoid any disruption to the supply of their medicines is a primary priority for UCB, and as a precautionary measure UCB is increasing stockholding of our core medicines in the UK to cover a 2-month supply period for all products, and a 3-month supply period for many of our medicines to mitigate any potential disruption in a “hard” / “no deal” Brexit scenario.

For UCBs’ AEDs there will be a 2 month supply cover for Keppra (Levetiracetam) in the UK, and a 3-month supply period for Briviact (Brivaracetam), Vimpat (Lacosamide) and Nootropil (Piracetam).

The Medicines Supply Contingency Planning Department for the Department of Health has requested all UK pharma companies to increase their stock holding by 6 weeks (on top of their existing safety stock) to cover the impact of a ‘hard’ Brexit, which UCB has complied with. In addition, the UK Government announced that in the event of a “hard” / “no deal” Brexit many important elements and processes relating to the supply chain for medicines coming to the UK from the EU will remain the same as they are today after March 29th 2019, and that the Government would give pharmaceutical manufacturers at least 2 years notice before any proposed changes to this would be considered.

Because avoiding disruption to patients is a key priority for UCB, we continue to actively and routinely engage UK Government to encourage the development of policies that will avoid disruption to UK patients receiving their medicines."

Lamictal (lamotrigine) dispersible tablets

Company: Glaxo-Smith Kline (GSK)

Dosage: 2mg, 5mg, 25mg and 100mg

Contingency Plan: "Until there is formal agreement, we will continue to implement our contingency plans for all scenarios, including no deal."

Lamictal (lamotrigine) tablets

Company: Glaxo-Smith Kline (GSK)

Dosage: 25mg, 50mg, 100mg and 200mg

Contingency Plan: "Until there is formal agreement, we will continue to implement our contingency plans for all scenarios, including no deal."

Lyrica (pregabalin) capsules

Company: Pfizer

Dosage: 25mg, 50mg, 75mg, 100mg, 150mg, 200mg, 225mg and 300mg

Contingency Plan: "In order to minimize any potential patient impact we have undertaken work to ensure we can continue to supply in the EU and the UK covering all Brexit scenarios.  We have carried out detailed assessments of the supply of all our medicines with the focus on ensuring we will continue to have them available for our patients.  Due to the long lead times we have in our supply chains, and in the interests of all patients across Europe, we are asking the EU and the UK to reach appropriate arrangements for alignment and cooperation for medicines regulation and supply, and to support these alongside other elements to foster longer-term regulatory continuity between the EU and UK."

Lyrica (pregabalin) oral solution

Company: Pfzier

Dosage: 20mg/ml

Contingency Plan: "In order to minimize any potential patient impact we have undertaken work to ensure we can continue to supply in the EU and the UK covering all Brexit scenarios.  We have carried out detailed assessments of the supply of all our medicines with the focus on ensuring we will continue to have them available for our patients.  Due to the long lead times we have in our supply chains, and in the interests of all patients across Europe, we are asking the EU and the UK to reach appropriate arrangements for alignment and cooperation for medicines regulation and supply, and to support these alongside other elements to foster longer-term regulatory continuity between the EU and UK."

Neurontin (gabapentin) tablets

Company: Pfizer

Dosage: 600mg and 800mg

Contingency Plan: "In order to minimize any potential patient impact we have undertaken work to ensure we can continue to supply in the EU and the UK covering all Brexit scenarios.  We have carried out detailed assessments of the supply of all our medicines with the focus on ensuring we will continue to have them available for our patients.  Due to the long lead times we have in our supply chains, and in the interests of all patients across Europe, we are asking the EU and the UK to reach appropriate arrangements for alignment and cooperation for medicines regulation and supply, and to support these alongside other elements to foster longer-term regulatory continuity between the EU and UK."

Neurontin (gabapentin) capsules

Company: Pfizer

Dosage: 100mg, 300mg and 400mg

Contingency Plan: "In order to minimize any potential patient impact we have undertaken work to ensure we can continue to supply in the EU and the UK covering all Brexit scenarios.  We have carried out detailed assessments of the supply of all our medicines with the focus on ensuring we will continue to have them available for our patients.  Due to the long lead times we have in our supply chains, and in the interests of all patients across Europe, we are asking the EU and the UK to reach appropriate arrangements for alignment and cooperation for medicines regulation and supply, and to support these alongside other elements to foster longer-term regulatory continuity between the EU and UK."

Nootropil (piracetam) tablets

Company: UCB Pharma

Dosage: 800mg and 1200mg

Contingency Plan: "Ensuring patients avoid any disruption to the supply of their medicines is a primary priority for UCB, and as a precautionary measure UCB is increasing stockholding of our core medicines in the UK to cover a 2-month supply period for all products, and a 3-month supply period for many of our medicines to mitigate any potential disruption in a “hard” / “no deal” Brexit scenario.

For UCBs’ AEDs there will be a 2 month supply cover for Keppra (Levetiracetam) in the UK, and a 3-month supply period for Briviact (Brivaracetam), Vimpat (Lacosamide) and Nootropil (Piracetam).

The Medicines Supply Contingency Planning Department for the Department of Health has requested all UK pharma companies to increase their stock holding by 6 weeks (on top of their existing safety stock) to cover the impact of a ‘hard’ Brexit, which UCB has complied with. In addition, the UK Government announced that in the event of a “hard” / “no deal” Brexit many important elements and processes relating to the supply chain for medicines coming to the UK from the EU will remain the same as they are today after March 29th 2019, and that the Government would give pharmaceutical manufacturers at least 2 years notice before any proposed changes to this would be considered.

Because avoiding disruption to patients is a key priority for UCB, we continue to actively and routinely engage UK Government to encourage the development of policies that will avoid disruption to UK patients receiving their medicines."

Nootropil (piracetam) solution

Company: UCB Pharma

Dosage: 333.3mg/ml

Contingency Plan: "Ensuring patients avoid any disruption to the supply of their medicines is a primary priority for UCB, and as a precautionary measure UCB is increasing stockholding of our core medicines in the UK to cover a 2-month supply period for all products, and a 3-month supply period for many of our medicines to mitigate any potential disruption in a “hard” / “no deal” Brexit scenario.

For UCBs’ AEDs there will be a 2 month supply cover for Keppra (Levetiracetam) in the UK, and a 3-month supply period for Briviact (Brivaracetam), Vimpat (Lacosamide) and Nootropil (Piracetam).

The Medicines Supply Contingency Planning Department for the Department of Health has requested all UK pharma companies to increase their stock holding by 6 weeks (on top of their existing safety stock) to cover the impact of a ‘hard’ Brexit, which UCB has complied with. In addition, the UK Government announced that in the event of a “hard” / “no deal” Brexit many important elements and processes relating to the supply chain for medicines coming to the UK from the EU will remain the same as they are today after March 29th 2019, and that the Government would give pharmaceutical manufacturers at least 2 years notice before any proposed changes to this would be considered.

Because avoiding disruption to patients is a key priority for UCB, we continue to actively and routinely engage UK Government to encourage the development of policies that will avoid disruption to UK patients receiving their medicines."

Perizam (clobazam) tablets

Company: Auden McKenzie

Dosage: 10mg

Contingency Plan: Awaiting update

Phenobarbital tablets

Company: Teva UK

Dosage: 15mg, 30mg and 60mg

Contingency Plan: "We are in very close contact with all the relevant authorities and our aim is to ensure that medicines continue to be available without disruption after Brexit. In the meantime, we remain a strong partner to the NHS and are committed to supplying the UK and the patients who depend on us."
 

Phenobarbital Elixir

Company: Thornton & Ross Limited

Dosage: 15mg/5ml

Contingency Plan: "We do not currently anticipate problems as many of our products are made on site for the UK market and we currently have adequate stocks of raw materials for production."

Phenytoin sodium capsules

Company: Flynn Pharma

Dosage: 25mg, 50mg, 100mg and 300mg

Contingency Plan: "We hold and have good access to safety stocks of all strengths of the product in the UK and will continue to do so, increasing those stocks ahead of ‘Brexit’ if required. Demand is monitored on a daily basis."

Primidone tablets

Company: Teva UK

Dosage: 50mg and 250mg

Contingency Plan: "We are in very close contact with all the relevant authorities and our aim is to ensure that medicines continue to be available without disruption after Brexit. In the meantime, we remain a strong partner to the NHS and are committed to supplying the UK and the patients who depend on us".

Sabril (vigabatrin) tablets

Company: Sanofi

Dosage: 500mg

Contingency Plan: "Sanofi welcomes the UK Government’s guidance in the event of no deal in the Brexit negotiations published on 23 August. Sanofi is confident that its existing contingency plans will ensure that people in the UK can access the treatments they need after the UK leaves the European Union. However, we have reviewed our stockpiling plans to meet the Government’s specific guidance to increase UK stock by 6 weeks over existing arrangements".

Sabril (vigabatrin) powder for oral solution

Company: Sanofi

Dosage: 500mg

Contingency Plan: "Sanofi welcomes the UK Government’s guidance in the event of no deal in the Brexit negotiations published on 23 August. Sanofi is confident that its existing contingency plans will ensure that people in the UK can access the treatments they need after the UK leaves the European Union. However, we have reviewed our stockpiling plans to meet the Government’s specific guidance to increase UK stock by 6 weeks over existing arrangements".

Tapclob (clobazam) oral suspension

Company: Martindale Pharma

Dosage: 5mg/5ml, 150ml and 250ml bottles 

Contingency Plan: "I can confirm that all lines of Tapclob, 5mg/5ml 150ml and 250ml bottles and 10mg/5ml 150ml and 250ml bottles, are UK sourced lines that are manufactured and packed in the UK and therefore, we are anticipating minimal impact on the supply of these products. However, we are working closely with our suppliers of materials and components to ensure that we have safety stocks in place ahead of the March 2019 deadline".

Tapclob (clobazam) oral suspension

Company: Martindale Pharma

Dosage: 10mg/5ml, 150ml and 250ml bottles

Contingency Plan: "I can confirm that all lines of Tapclob, 5mg/5ml 150ml and 250ml bottles and 10mg/5ml 150ml and 250ml bottles, are UK sourced lines that are manufactured and packed in the UK and therefore, we are anticipating minimal impact on the supply of these products. However, we are working closely with our suppliers of materials and components to ensure that we have safety stocks in place ahead of the March 2019 deadline".

Tegretol (carbamazepine) liquid

Company: Novartis UK

Dosage: 100mg/5ml

Contingency Plan: "Will meet Government’s specific guidance to increase UK stock by 6 weeks over existing arrangements."

Tegretol (carbamazepine) prolonged release tablets

Company: Novartis UK

Dosage: 200mg

Contingency Plan: "Will meet Government’s specific guidance to increase UK stock by 6 weeks over existing arrangements."

Updated information: Due to some preparations of Carbagen (carbamazepine) manufactured by Mylan being unavailable until mid-late 2019, Novartis, which is the alternative brand of carbamazepine tablets, have confirmed that they are able to support additional demand during this time for all affected strengths and formulations.

Topamax (topiramate) tablets

Company: Janssen Cilag

Dosage: 25mg, 50mg, 100mg and 200mg

Contingency Plan: "Will meet Government’s specific guidance to increase UK stock by 6 weeks over existing arrangements."

Topamax (topiramate) sprinkle capsules

Company: Janssen Cilag

Dosage: 15mg, 25mg and 50mg

Contingency Plan: "Will meet Government’s specific guidance to increase UK stock by 6 weeks over existing arrangements."

Trileptal (oxcarbazepine) tablets

Company: Novartis UK

Dosage: 150mg, 300mg and 600mg

Contingency Plan: "Will meet Government’s specific guidance to increase UK stock by 6 weeks over existing arrangements."

Trileptal (oxcarbazepine) oral suspension

Company: Novartis UK

Dosage: 60mg/ml

Contingency Plan: "Will meet Government’s specific guidance to increase UK stock by 6 weeks over existing arrangements."

Vimpat (lacosamide) syrup

Company: UCB Pharma

Dosage: 10mg/ml

Contingency Plan: "Ensuring patients avoid any disruption to the supply of their medicines is a primary priority for UCB, and as a precautionary measure UCB is increasing stockholding of our core medicines in the UK to cover a 2-month supply period for all products, and a 3-month supply period for many of our medicines to mitigate any potential disruption in a “hard” / “no deal” Brexit scenario.

For UCBs’ AEDs there will be a 2 month supply cover for Keppra (Levetiracetam) in the UK, and a 3-month supply period for Briviact (Brivaracetam), Vimpat (Lacosamide) and Nootropil (Piracetam).

The Medicines Supply Contingency Planning Department for the Department of Health has requested all UK pharma companies to increase their stock holding by 6 weeks (on top of their existing safety stock) to cover the impact of a ‘hard’ Brexit, which UCB has complied with. In addition, the UK Government announced that in the event of a “hard” / “no deal” Brexit many important elements and processes relating to the supply chain for medicines coming to the UK from the EU will remain the same as they are today after March 29th 2019, and that the Government would give pharmaceutical manufacturers at least 2 years notice before any proposed changes to this would be considered.

Because avoiding disruption to patients is a key priority for UCB, we continue to actively and routinely engage UK Government to encourage the development of policies that will avoid disruption to UK patients receiving their medicines."

Vimpat (lacosamide) tablets

Company: UCB Pharma

Dosage: 50mg, 100mg, 150mg and 200mg

Contingency Plan: "Ensuring patients avoid any disruption to the supply of their medicines is a primary priority for UCB, and as a precautionary measure UCB is increasing stockholding of our core medicines in the UK to cover a 2-month supply period for all products, and a 3-month supply period for many of our medicines to mitigate any potential disruption in a “hard” / “no deal” Brexit scenario.

For UCBs’ AEDs there will be a 2 month supply cover for Keppra (Levetiracetam) in the UK, and a 3-month supply period for Briviact (Brivaracetam), Vimpat (Lacosamide) and Nootropil (Piracetam).

The Medicines Supply Contingency Planning Department for the Department of Health has requested all UK pharma companies to increase their stock holding by 6 weeks (on top of their existing safety stock) to cover the impact of a ‘hard’ Brexit, which UCB has complied with. In addition, the UK Government announced that in the event of a “hard” / “no deal” Brexit many important elements and processes relating to the supply chain for medicines coming to the UK from the EU will remain the same as they are today after March 29th 2019, and that the Government would give pharmaceutical manufacturers at least 2 years notice before any proposed changes to this would be considered.

Because avoiding disruption to patients is a key priority for UCB, we continue to actively and routinely engage UK Government to encourage the development of policies that will avoid disruption to UK patients receiving their medicines."

Zebinix (eslicarbazepine acetate) tablets

Company: Eisai

Dosage: 200mg and 800mg

Contingency Plan: "Will have a stock hold of approx. 4 months at Movianto UK (wholesalers). Wholesalers who supply UK will not be affected."

Zonegran (zonisamide) capsules

 

Cannabis Oil

In all matters related to this as in other clinical matters we rely on the information from Epilepsy Research UKwho have issued the following statement

The ERUK view of the current debate around cannabis-based products as a treatment for epilepsy can be found below.

To summarise the statement, whilst there is evidence that medical-grade preparations of an active ingredient of cannabis, cannabidiol, can be beneficial in some types of epilepsy, cannabis oil itself cannot be considered a safe or effective treatment. This is due to the variety of compounds found in over-the-counter cannabis oils, some of which may have harmful effects. People with epilepsy and their families should consult with their epilepsy specialist doctor for advice as to treatment options.

With very many thanks to Professor Hannah Cock

Why the interest in cannabis?

The idea that cannabis might be helpful for some people with epilepsy has been around for thousands of years. However, it is only in the last few decades that we have started to understand why this might be. The brain makes chemicals (endocannabinoids) which are very similar in structure to some components of cannabis. These are involved in the regulation of how “excitable” the brain is, and so can also influence the liability to seizures. Cannabis contains hundreds of different chemicals, the two most important of which are Tetrahydrocannabidiol (THC) and Cannabidiol (CBD). Both THC and CBD seem to be effective against seizures [1]. THC is the part that makes people feel “high”, but it can also cause negative effects such as anxiety and paranoia [2]. THC has also been shown in some models of epilepsy to promote seizures. There is also a small risk of the brain getting used to THC, needing more over time (tolerance) and potentially leading to addiction. Taken regularly there is also significant evidence that THC, particularly in the developing brain (up to young adulthood), can sometimes cause permanent damage to IQ, mental health and brain structure. For these reasons doctors and scientists have focussed on CBD, which doesn’t seem to carry these risks.

The first good quality evidence appeared in 2016 [3], following which several well-controlled clinical trials of a near pure formulation of CBD (Epidiolex™, made by the UK Company GWPharma) were published [4-6]. EpidiolexTM contains less than 0.1% THC.The best trials of new drugs include a period of time when patients and their doctors don’t know if the additional drug they are taking as part of the trial contains the drug being studied or not. There are strict entry criteria so that after allocating people randomly into taking the drug or the placebo, the two groups are otherwise well matched and the effect of the drug (as opposed to other factors) can be more clearly identified. These are called randomised blinded studies, and the pill or solution without the active drug is called the placebo. At the end of the blinded-placebo phase, everyone is then switched to the active drug. This is to measure the “placebo effect”: this refers to the known fact that some people will get better when they start a new pill or solution, even if it doesn’t’ actually contain the new drug under study.The blinded placebo controlled studies of CBD have all been done in people with two particularly severe paediatric onset, drug resistant and often life limiting epilepsies: Dravet’s syndrome and Lennox Gastaut Syndrome. Most of the participants were children, all taking other antiepileptic drugs at the same time, and having at least 8 disabling motor seizures each month. The blinded phase of the studies lasts only a few months, so has to include people with very frequent seizures to measure change

.Observational studies

There have also been studies in over 3000 people with a range of different epilepsies taking CBD, with or without some THC, over periods of months to years, but without a blinded placebo arm (known as “Open studies”) [7]. Open studies are often much less well designed, with a higher risk of more positive reports oeffectiveness than might reflect the true situation. That doesn’t mean people in these studies are lying, just that epilepsy is inherently variable and will sometimes improve over time without a change in drugs, so by chance alone this might sometimes be misinterpreted as a response to a new drug. There is also a lot of evidence for epilepsy that factors such as mood and stress can influence seizure frequency. Epilepsy trials, like trials in other conditions, show evidence of a placebo effect, and the placebo effect is known to be bigger where those taking what they think is a new drug have a strong belief that it will work. There has been intense social and media attention around cannabis in recent years. Together with a belief held by many that a natural product is inherently safer and more effective than a synthetic compound, this may mean a placebo effect is more likely with cannabis-derived drugs than some other new agents. Ultimately what this means is that observational data is useful in terms of detecting safety and side effects, but much less reliable as a measure of effectiveness.Effectiveness, side effects and short term safetyBased on the blinded trials, and the better controlled open label studies, the best current estimates are that of every 8 people with drug resistant epilepsy treated with CBD, 1 will have a greater than 50% reduction in the frequency of disabling motor seizures, but only around 1 in 171 will achieve long term seizure freedom. Around 1 in 3 will have side effects, most commonly diarrhoea, drowsiness, reduced appetite, vomiting and fatigue. These are often mild, and improve over time or with a reduction in dose. Around 1 in 23 people will have serious side effects, usually meaning the drug has to be stopped. Interactions with other antiepileptic drugs, so far in particular with valproate and clobazam have also been identified, with dose adjustments sometimes needed [7].Given the very severe nature of the epilepsies that have been studied in the trials, even a 50% reduction in disabling seizures can make a significant difference to the individual, and for the small number who have a dramatic response without side effects this can be life changing. It is this evidence that has resulted in the American licensing authorities approving Epidiolex™ for use in two severe drug-resistant paediatric onset epilepsies (Dravet and Lennox Gastaut Syndromes). European and UK authorities are expected to follow suit in 2019.Comparison to other licensed antiepileptic drugsThere have been no studies comparing CBD, or other cannabis-based drugs to other licensed drugs. In broad terms, based on the number of people whose seizures improve and the risk of side effects, CBD looks similar to other newer drugs. However, we have much more data about safety and effectiveness of other drugs, especially taken in the long term, than we do about CBD. The possible benefits and risks of trying CBD in patients with drug-resistant epilepsies will vary considerably between individuals. Doctors specializing in epilepsy treatment will discuss this, and other treatment options, with patients and their families to help make the best decision for the individual.

Over the counter preparations

There are a range of cannabis oils available in health food shops, over the internet, and in countries where “medicinal cannabis” is available. These products contain both CBD and THC in varying proportions. Products with <0.2% THC are legal in the UK, but are not manufactured under the same controlled conditions as pharmaceutical drugs are. They can contain other chemicals, including pesticides and impurities, including some components of the cannabis plant linked to cancers and other long term health problems [2]. The quantities of CBD and THC may not match what they say on the label and can vary from batch to batch. Doctors and scientists do not recommend use of these products. People with severe drug-resistant epilepsies should consult with their epilepsy specialist to explore treatment options, including whether there may be clinical trials they can take part in. With the impending change in licensing for cannabis-based products, and early promising evidence, it is very likely that there will be new trials recruiting in a broader range of epilepsy types in the coming months and years.

If you usually take Carbagen SR, speak to your GP, epilepsy nurse or epilepsy specialist for advice. You may need to temporarily switch to a different version of carbamazepine until Carbagen SR is back in stock.

The charity Contact a Family which give valuable adto families of disabled children has shortemed its name to Contact. Their website and contact details remiain the same

The next meeting of Epilepsy HERE will be  at Headway House, Kent and Canterbury Hospital, Ethelbert Road, Canterbury  on Monday1st October2018at 6.30 pm.Future meetings wil be held at Headway Houe, Kent and Canterbury Hospital on the first MONDAY of each month except January and August or if it is a Bank Holiday from 6.30 pmto 8.00 p.m. 

The next Coffee Break meeting at Whitstable United Reformed Church, Middle Wall, Whitstable  on Tuesday 18th September 2018 from 10.00-11.30 a.m. Why not come along to meet us and chat about whatever interests you.

 

 

The Kent & Medway Care Record

Recent changes in the law means that all NHS organisations must now legally share information about your care with other professionals to enable this joined up care to happen.

The complex picture in Kent & Medway means there are 4 x hospital trusts, 3 x provider of core community services, 2 x providers of community based mental health services Also there are 249 GP practicesaround 466 social care providers. 394 dentists

157 opticians more than 335 pharmacies in primary care 2 x Out-of-hours primary care services and 303 privately run residential and nursing care homes In addition a number of people travel from outside Kent and Medway to use services in Kent and Medway hospitals.

So what’s the vision?

Vision for the KMCR “Regardless of who employs them, health and care professionals are able to quickly and easily view their patient’s digital records (or relevant components of them) from wherever they are, and without the need to navigate multiple systems, regardless of the local health or care provider who holds them.”

 

How will this happen?

The way in which this is going to be done is via the Kent & Medway Care Record which is a computer system that NHS organisations can view and read on a range of devices to help them plan and deliver the health care that you need. Only registered health and social care professionals can read your records and they can only see the elements that are relevant to their role and the care that they are providing you.

For example, a Care worker visiting someone at home might be able to see that they have recently been discharged from A&E without having full access to that person’s entire medical history. But they would be able to see who to contact to find out more if needed.

What are the planned benefits?

For patients:

For health and social care professionals and providers:

What is the Governance for the Care Record?

The basis for sharing information for direct care is General Data Protection Regulation Article 9(2)(h) and Article 9(3). The Kent and Medway Care Record will enable health and social care organisations to meet the statutory ‘duty to share’ set out in the Health and Social Care Act 2012 /2015. Care providers do not need the consent of the patient to access relevant information about the patient or to share it with those who provide (or support the provision of) direct care to the patient if all of the following are met.

 

Next steps (anything else to add?)

Your feedback on the proposed KMCR will be taken back to the reference Group.

The development of the KMCR requirements will be led by a Citizen User Group and the Clinical Reference Group.

For more information about the Kent & Medway Care Record and other plans to improve health and social care services please visit:

https://kentandmedway.nhs.uk/latest-news/a-new-shared-care-record-for-kent-and-medway-is-on-the-way/

 

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