Cannabis Based Medicine

It was decided that from November 1st 2018 Cannabis based medicine would be able to be prescribed by UK specialist clinicians. before the law changed it was extremely difficult to get a prescription for Cannabis based medicine. It was a big step forward when in 2018 a review into cannabis based medicine was announced by the Home Secretary, Sajid Javid this then led to a change in the law allowing it to be prescribed. Unfortunately many people are still finding it hard to access this treatment. it was announced that it would only be available to those with exceptional clinical need’s and that only specialist clinicians would be able to prescribe this medication not GP’s. Another issue was that there was no licensed Cannabis based medicine products in the UK for epilepsy yet. All of these things already made it hard to access the medication. These clauses were put in place to make sure that only those people in critical need of the treatment got the medication. Evidence of effectiveness and safety of some Cannabis based medicines in epilepsy is still quite limited.

There is some good news for the effectiveness for one part of the Cannabis plant- Cannabidiol (CBD). This is the part of the plant which does not cause the effect of a high. A CBD medicine ,under the brand name Epidiolex is now approved for use in the US and a decision is expected for European Medicines Agency later this year. However the evidence for Epidiolex focuses on Dravet and Lennox-Gastaut syndromes in children. Evidence for its use for other conditions and in other age groups is limited.

The British Paediatric Neurology Association (BPNA) guidance has focused on Cannabis-based medicines in severe epilepsy in children. It is recommended that Cannabis-based medicines be used only as a last resort. All other available licensed medicines need to have been tried without success. The Ketogenic diet must have either been tried unsuccessfully or not be suitable. Epilepsy surgery must also not be suitable. If these conditions are met the BPNA only recommends prescribing Epidiolex. It does not recommend Cannabis oil or any other Cannabis-based medicine.

Later this year the National Institute for Health and Care Excellence (NICE) is expected to publish its own guidelines for specialist clinicians. Epilepsy Action is a registered stakeholder with NICE and is engaging with them around the guidelines through the formal consultation process. Once they are published, these guidelines will replace the guidance which is currently available.

There have also been concerns about current access to Epidiolex. This is the only Cannabis-based medicine recommended by the guidance, but the guidance is still very restrictive over its use and the fact that it is not licensed yet and the high costs associated with it are also creating a problem in terms of access. Later this year this medicine is expected to be licensed for prescription in the UK. When this happens accessing the medicine should be easier but its high cost could still be a barrier when trying to access this treatment. Steps have been taken towards makint this treatment more available in the UK but there is still more that needs to be done. With the expected Epidiolex licence and the new guidelines from NICE on the horizon the situation is likely to continue to change in the next year and organisations like Epilepsy Action are working hard to make this medication more accessible to people who need it.
Source Epilepsy Action.
For more information about this new treatment go to

Employers and the Equality act

Employers should not refuse a person with epilepsy a job because of their condition without having a very good reason. But jobs in the Armed Forces are not covered by the Equality Act 2010. This means you can be refused a job in the Armed Forces if you are diagnosed with epilepsy. There is more information about work and your rights on the Epilepsy Action website.
The Ipswich Epilepsy Support Group have free leaflets about people working with epilepsy if you would like one please phone our helpline on 01473461407.
Source Epilepsy Action.

Pregablin and Gabapentin to be reclassified as Class C drugs

The UK government announced last week that Pregabalin and Gabapentin will be reclassified as class C under the misuse of drugs act 1971. This change will take place in April 2019. Class C is the third in the goverment’s three tier system for categorising controlled substances with the least amount of harm compared with those in class A or B. These drugs are used to treat conditions like epilepsy, nerve pain and anxiety.

The Home Office has said these medicines will still be available for legitimate use on prescription by a doctor after the change in the law. These changes mean that doctors will now have to physically sign prescriptions rather than use electronic copies. The medicines will have to be dispensed within 28 days of the prescription being written. The changes mean it will be illegal to possess these medicines without a prescription. It will also be illegal to supply or sell them. This is an effort towards stronger controls accountability and a reduction in the potential for misuse of these medicines. The concerns of these drugs relate to misuse of the medication’s. This may include taking them if you don’t have a prescription or taking them in a way not prescribed by your epilepsy specialist.

The goverment’s decision to reclassify these medicine follows experts highlighting a rising number of deaths linked to their misuse. However according to researchers from the University of Bristol more than four in five deaths(80%) involved the misuse of these medicines alongside street drugs such as Heroin.

This is not the first medicine used for epilepsy to be classified as a class C drug. Midazolam and Diazepam used as emergency medicine for prolonged seizures have been listed as class C for around 30 years.

If you have any concerns about your medicines you can speak to your GP or epilepsy specialist. You can also call the Epilepsy Action helpline free on 08088005050.

source Epilepsy Action.

Our 2019 Quiz is back on May 18th at 7pm

Our Quiz Night will be held On Saturday 18th May 2019 at the Norbridge Social Club
Norwich Rd Ipswich IP1 4HA. The quiz will start at 7pm and consists of 10 rounds of questions.
The Tickets cost £6 per person paid on the night and this includes a buffet.Up to 6 people per team. There is a prize draw and facilities include Disabled access and a licensed bar and a large carpark.
This map will help you find the venue.
To ensure a place and to avoid disappointment and for catering purposes if you would like to attend, please phone our helpline on 01473 461407.

Please support us so we can support you

Travelling around this christmas

Just a quick reminder to people with Epilepsy when travelling any where if you are refused a driving licence because of your epilepsy you will be entitled to a disabled persons bus pass and a disabled rail card. These can help you get around without a car. For more information about applying for a rail card go to…/how-to-apply and to apply for a bus pass contact your local council or bus provider for more information. Please note fees will apply for the bus pass and rail card.

Advice for people who prescribe epilepsy medicine and patient’s taking the drug’s

The MHRA’s guidelines about prescribing epilepsy medicines

The Medicines and Healthcare products Regulatory Agency (MHRA) is an agency of the Department of Health. In 2017 they updated their guidance on prescribing epilepsy medicines. This followed a review by the Commission on Human Medicines (CHM) which looked at the evidence on patients switching between different manufacturers’ products of particular epilepsy medicines.
CHM advise that epilepsy medicines can be classified into three categories. This classification aims to help prescribers and patients decide whether it is necessary to maintain consistency of supply of a specific company’s product. It is not official policy, but guidance only.
The MHRA’s guidelines about prescribing epilepsy medicines

Category 1

It has been shown that the differences between different drug companies’ products could affect seizure control and/or side-effects. Prescribers should ensure a specific drug company’s product is always prescribed.

Category 1 Drugs

Category 2
Whether to always have a specific drug company’s product should be based on what is right for the individual. Prescribers should talk this through with their patient and/or carer. They should look at things like seizure frequency and treatment history. They should also take into account how their patient and/or carer feels about being prescribed different versions of their epilepsy medicine.

Category 2 Drugs

Category 3

The likelihood of there being any differences that could affect seizure control and/or side-effects between different manufacturers’ products is considered to be extremely low. However, prescribers should look at each patient individually, taking into account how they and/or their carers feel about being prescribed different versions of their epilepsy medicine.

Category 3 Drugs

How to get the same version of your epilepsy medicine
The most reliable way to get the same version is to ask your doctor to write the brand name on your prescriptions. Or, if you want to stay on a particular manufacturer’s generic version, the doctor can write the generic name and the name of the manufacturer on your prescription. Your pharmacist should always try to give you the version your doctor has written on your prescription.
If you take an epilepsy medicine that is in category1, your prescriber should ensure you always have the same version of your medicine. If you take an epilepsy medicine in categories 2 or 3, your prescriber might want to give you a generic prescription. However, the current guidelines say that they should also take into account how you feel about having a different version.
Always consultant a GP or other medical professional before stopping any type of medication.

Reporting problems with epilepsy medicines
If you think you are getting side-effects from your epilepsy medicine, or they have caused your epilepsy to change, talk to your GP. They can report these issues to the MHRA. You can also report side-effects yourself by completing a Yellow Card. These are available from your GP, pharmacist or the Yellow Card scheme:

Tel: 0800 731 6789 (10.00am – 2.00pm Monday – Friday)

Source Epilepsy Action correct as of 13.11.18

Happy Birthday NHS

The NHS has just celebrated its 70th birthday this year. The NHS was set up in 1948 by Health Secretary Aneurin Bevan. The idea was to have healthcare under one umbrella organisation which would be free at the point of delivery. This means it would be paid for mainly through taxes, but when people need care, they would not have to pay.

The Ipswich Epilepsy Support Group would like to wish the NHS a happy birthday and thank them for all the work they have done and do and especially thank them for all the work they do to help people who suffer from epilepsy.

Get a Doodle Day in the diary

Friday 21st September 2018 sees the return of National Doodle Day, Epilepsy Action’s annual festival of fun and fundraising. As ever the biggest part of national Doodle Day will be the online auction of celebrity doodles. There are many amusing and wonderful doodles from people like the illustrators of some of your favourite books and famous faces from stage and screen.
Their Doodles will all be on sale through Ebay from 21st to 23rd Sptember. You can find your favourite Doodle at and don’t forget to bid when the auction opens.