Green is the new purple

No, it’s not a mistake. Epilepsy Society really has turned green and for good reason.

We feel passionately that human health should be higher on the climate change agenda. So as world leaders gather in Glasgow for COP26, we are taking the bold decision to turn our much-loved purple branding green.

Epilepsy Society’s logo in two shades of green for the length of COP26

We know that the sudden change will jar. We hope it will stop people in their tracks. And we hope it will draw attention to an overlooked consequence of climate change. Our health.

The new green look is for two weeks only and it doesn’t mean we are abandoning epilepsy. On the contrary.

Evidence is already suggesting a link between increases in global temperatures and some aspects of neurological conditions, including epilepsy.

People with some severe epilepsies such as Dravet syndrome have reported an increase in seizures during the unusually hot summers of recent years. And in our survey of more than 1,000 people with epilepsy, 62 per cent of those whose seizures were uncontrolled, said that they saw an increase in seizure frequency or severity.

Which is why we are taking a stand on behalf of all the people we support. We are nailing our colours to the mast.

Our Director of Genomic Research, Professor Sanjay Sisodiya, has set up a global initiative, Epilepsy Climate Change, to understand more about the effects of climate change on epilepsy through research, and to promote good practices within healthcare that reduce contributions to climate change.

And our Chief Executive Clare Pelham is calling on the NHS to take a global leadership position on climate change and health, bringing together nation states to address the worldwide consequences of public health.

As a charity we are reviewing our work practices to ensure that, wherever possible, our choices are green and kind to the planet. Across research, advocacy and care, members of our team are making personal decisions to reduce the use of single-use plastics, include plant-based meals in their diets, walk or take public transport where possible, and wage a war on waste.

The green branding is for the length of COP26 (31 October -12 November ) but our commitment is long-term.

We believe it is important to address the cost of climate change to human health as a matter of urgency. We believe this to be particularly so in the field of epilepsy.

So, for the next fortnight, green is the new purple. It is a small gesture but one which we feel to be of great importance at the Epilepsy Society.

Find out more
During COP26, we have launched a special supplement – #TheEnvironMentalIssue – printed on Mohawk paper, using algae ink. Read more about it and download the newspaper.

Zach’s Law to be introduced in House of Lords

Amid ongoing turmoil in Westminster, one policy unites MPs from across the political divide: Zach’s Law.

In another exciting week for the Zach’s Law campaign, the Government have promised to include an amendment to criminalise epilepsy trolling when the Online Safety Bill reaches the House of Lords in autumn. And, to top this off, MPs from all major political parties have joined forces to praise our young campaigner “wee Zach.”

While they had previously promised to enact Zach’s Law, the Government had not said when or in which piece of legislation. But last week they confirmed it would be included in the Online Safety Bill currently working its way through Parliament, and thus become law in early 2023 – according to existing parliamentary schedule. The inclusion of Zach’s Law in the Online Safety Bill is especially important as it means epilepsy trolling will be covered by the regulatory powers of Ofcom and ability to financial sanction tech companies which are included in the Bill.

In a written statement (opens in hansard.parliament.uk), Culture Secretary Nadine Dorries admitted that the sending of flashing images to people with epilepsy caused “significant harm” and confirmed that “the Government will legislate for a new offence of epilepsy trolling through this Bill.”

Ms Dorries said: “ We had hoped to introduce a Government amendment at Report stage but it is essential to create an offence that is legally robust and enforceable so that those perpetrating this disgraceful behaviour will face the appropriate criminal sanctions. We therefore commit to table amendments to create this offence in the Lords.”

Following this exciting development, MPs from the four largest political parties praised Zach Eagling, the campaign’s 11-year-old figurehead. Speaking at the Report Stage of the Online Safety Bill, John Nicolson, the SNP’s culture spokesperson, said he wanted to pay tribute to “wee Zach” who had led the Epilepsy’s Society’s campaign against the “wicked people” who send flashing images to people with epilepsy.

Damian Collins, the newly appointed Minister for Tech and Digital Economy, highlighted the importance of finding common ground in Parliament and held up Zach’s Law as an example of this.

Mr Collins, who previously chaired the Joint Committee which scrutinised the Online Safety Bill, described Zach’s Law as “a good example of how a clear offence, something that we all agree to be wrong, can be tackled through this legislation; in this case, a new offence will be created, to prevent the pernicious targeting of people with epilepsy with flashing images.”

The cross-party nature of Zach’s Law was also highlighted by Zach’s local MP, Kim Leadbeater. Ms Leadbeater said: “It is not always easy, but I know we can find common ground in this place, as we saw during the Committee stage of the Bill when I was delighted to gain cross-party support to secure the introduction of Zach’s law, inspired by my young constituent Zach Eagling, which will outlaw the dreadful practice of epilepsy trolling online.”

Other MPs who spoke in favour of Zach’s Law included Conservative Julian Knight, who chairs the DCMS Select Committee, and Labour grandee Dame Margaret Hodge.

Speaking after the debate, Sarah Green, the Liberal Democrat MP for Chesham and Amersham, where the Epilepsy Society is based, said: “I am pleased that the Government have committed to passing Zach’s Law. I want to congratulate the Epilepsy Society on their long and persistent campaign which has led to this. It is a great outcome for the campaign and a real testament to the organisation’s hard work.”

The Online Safety Bill now moves on to the Third Reading in the House of Commons. This will then be followed by the Bill’s introduction to the House of Lords, which will include Zach’s Law.
Source Epilepsy Society

Hot tips for coping in the heatwave

A survey* carried out by the Epilepsy Society showed that 62 per cent of people with uncontrolled seizures experience an increase in their seizure activity during unusually hot weather.

In the current heatwave, it is important to make sure that you take sensible precautions to ensure that you stay cool, particularly if you know your epilepsy is sensitive to the heat. Here are a few tips that may help:

Try to avoid going out in the sun at midday when it is hottest. If possible, limit outdoor activities to early morning or early evening when temperatures are likely to be cooler
Make sure you keep well hydrated. Your brain is 78 per cent water so its performance will quickly be affected by lack of water. Keep a supply of water with you wherever you go
Where possible, stay cool in an air-conditioned room or use a fan to keep air circulating
Closing curtains and blinds can help to keep a room cool
Wear cool, light-coloured clothing that won’t absorb the heat
Listen to your own body. If you are feeling weak, dizzy or over-heated, take a break and find somewhere shady to relax. Tell a friend or family member how you are feeling
Keep your epilepsy medication in a cool place, out of direct sun and make sure you take as prescribed
Cooling off in the pool is always refreshing but remember to follow all the usual precautions – don’t swim alone; swim with a friend or family member; tell the lifeguard you have epilepsy; don’t swim in open water where there is no lifeguard; even a paddling pool can pose a danger if you have epilepsy – always cool off with a friend, never alone.
*The charity conducted its survey following the week of 21-27 June 2020, when temperatures soared above 30 degrees Celsius.
Source Epilepsy Society

Cannabis Oil for Epilepsy

Cannabis oil for epilepsy
Published on 23 February 2020

Cannabis oil for epilepsy
On 1 November 2018, the Government’s landmark decision to reschedule some cannabis based products for medicinal use, came into force. The change in law means that specialist doctors in the UK can now prescribe medicinal cannabis to people with a limited number of conditions, including epilepsy. Here we explain what the change in law means for people with epilepsy.

What is cannabis?
Cannabis is made up of hundreds of different components. The most well known are two cannabinoids: CBD – cannabidiol – and THC – tetrahydrocannabinol. These are found naturally in the resin of the cannabis plant.

THC is the psychoactive compound in cannabis. It is responsible for the “high” people feel. The legal limit of THC content in a product, as stipulated by the Home Office, is 0.2%.

CBD is not psychoactive and it is thought to be responsible for many of the medical benefits associated with cannabis.

What is medicinal cannabis?
The Government has defined a cannabis-based product for medicinal use in humans as one that:

“Is or contains cannabis, cannabis resin, cannabinol or a cannabinol derivative; is produced for medicinal use in humans and is a medicinal product, or a substance or preparation for use as an ingredient of, or in the production of an ingredient of, a medicinal product”.

Guidance around prescribing cannabis-based products
In August 2019, NICE – the National Institute of Health and Clinical Excellence – announced that it would not be recommending that cannabidiol, a medicinal cannabis in the form of Epidyolex, should be prescribed on the NHS for children with two severe forms of epilepsy. This is on account of the fact that its long-term effect remains unclear.

The body also has concerns about the ‘viability of the economic model’ used by GW Pharma, the company that developed the drug, to establish the cost to be charged to the NHS for it. It concluded that Epidyolex would not, at this stage, be an effective use of NHS resources.

Our Medical Director, Professor Ley Sander, explains why he believes they are right to exercise caution.

The recommended guidelines are still only draft and the consultation closes on 16 September. So there is still time for you to have your say and let them know what you think. Professor Sander will be doing the same. All comments received will be considered by NICE and final guidance is likely to be published in November 2019.

The British Paediatric Neurology Association (BPNA) has drawn up interim guidance around epilepsy on behalf of NHS England.

The Association of British Neurologists (ABN) has also drawn up interim guidelines for the use of cannabis-based products in neurology for adults.

Guidance for other conditions is being drawn up the Royal College of Physicians with the Royal College of Radiologists (RCR) and the Faculty of Pain Medicine of the Royal College of Anaesthetists.

Guidance from the Association of British Neurologists (ABN)
Interim guidance from the ABN states that there is only published evidence for the use of medicial cannabis in Dravet syndrome and Lennox-Gastaut syndrome. Prescriptions should only be for cannabidiol.

Although the label Lennox-Gastaut is often broadly attached to severe epilepsies with compatible seizure types and intellectual disabilities, it is important that there is a clear syndromic diagnosis.

Dosing data for adults is currently very limited, although more information is expected shortly.

Guidance from the British Paediatric Neurology Association (BPNA)
The BPNA guidance states that non-licensed medicinal cannabis should only be considered for children who:

have an epilepsy that does not respond to conventional licensed anti-epileptic medications
have not responded to the ketogenic diet or who are not suitable for the ketogenic diet
who are not candidates for epilepsy surgery.
The BPNA states that the current best evidence for medicinal cannabis is CBD, a highly purified liquid, which has been licensed in the US by the Food and Drug Administration and is currently going through the application process for a licence from the European Medicines Agency.

CBD does not contain any significant amount of THC, the component of cannabis associated with producing a ‘high’.

What is the evidence?
The reason that the BPNA is only recommending CBD is that there is some evidence to show that this newly developed drug can be effective in reducing some type of seizures in Dravet and Lennox Gastaut syndromes.

Three double blind randomised controlled trials of pure CBD in children and young people with these syndromes has shown a greater reduction in monthly seizures compared to placebos. There was also a greater reduction in drop seizures in people taking CBD compared to those on a placebo. Further open label studies have shown that it may also have an anti-epileptic effect in the epilepsies in general.

What is the evidence around THC?
While some studies have also suggested that THC may have an anti-epileptic effect, animal studies suggest it can also trigger seizures. There is no evidence from randomised controlled clinical trials for products with higher proportions of THC (more than 0.2 per cent).

Concerns have also been raised about the effect of THC on the developing brain in children and young people. Evidence suggests that chronic exposure to THC can affect brain development, structure and mental health.

There is also no good scientific evidence to support suggestions that the addition of THC in combination with CBD increases the efficacy of cannabis-based medicinal products for children.

“Clinicians should not feel under pressure to prescribe cannabis-based medicinal products until they have undergone proper clinical trials,” says the BPNA.

“We recommend that these products undergo randomised clinical trials for efficacy and safety before they are routinely prescribed in the UK. We welcome the rescheduling of these products from Schedule 1 to Schedule 2 that will enable their investigation in clinical trials.”

Children already on products containing THC
The BPNA also recommends that where children are already taking other cannabis-based products that contain higher proportions of THC, they should be transitioned on to CBD until strong evidence for these products can be produced through clinical trials.

The Government has no plans to legalise the use of cannabis for recreational purposes. Possession of cannabis is illegal. This includes cannabis for medical use unless it has been prescribed for you.

Getting a prescription for medicinal cannabis
Cannabis-based medicinal products can only be prescribed by a specialist. A GP cannot prescribe the medication but could refer you to a specialist.

The specialist will discuss all other treatment options with you first before considering a cannabis-based product.

A prescription for medicinal cannabis would only be given when all other treatment options have been tried or are considered unsuitable, and would only be given if the doctor considers it to be in your best interests.

People always have the option of seeking a second opinion.

Health food shops
There is also a wide range of other cannabis products available on the internet and in some commercial outlets such as health food outlets and from cannabis ‘dispensaries’ internationally. These products are of unknown quality and contain CBD and THC in varying quantities and proportions.

MHRA is working with individual companies to ensure that CBD-based products that make medicinal claims should be licensed and meet safety, quality and efficacy standards to protect public health. To date, the MHRA has licensed no other cannabis based medicinal products as
Every effort is made to ensure that all our information is correct and up to date. However, Epilepsy Society is unable to provide a medical opinion on specific cases. Responses to enquiries contain information relating to the general principles of investigation and management of epilepsy. Answers are not, and should not be assumed to be, direct medical advice and is not intended to be a substitute for medical guidance from your own doctors. Epilepsy Society and any third party cannot be held responsible for any actions taken as a result of using this service. Any references made to other organisations does not imply any endorsement by Epilepsy Society.

Source Epilepsy Society

Pregabalin New Warnings of increased risks for unborn baby during pregnancy

Women with epilepsy who are taking pregabalin are warned that the medication could increase risk of physical harm for a baby during pregnancy and are advised to consult their doctor. It is important never to stop taking your medication without seeking medical advice first.

New advice has been published about risks linked to the epilepsy medication, pregabalin, when taken during pregnancy.

Pregabalin is also known by the brand names Lyrica, Alzain, Axalid and Lecaent.

Studies have shown that taking pregabalin during pregnancy is associated with an increased risk of having a baby born with physical birth abnormalities.

Risks in general population

In the UK it is estimated that two or three babies in every 100 are born with a physical abnormality. 

The risk can be raised by some medical conditions and by certain medications taken during pregnancy.

Risks identified by European study

The MHRA (Medicines and Healthcare products Regulatory Agency) has reviewed results from a new study of pregabalin from four European countries. The study showed that six babies out of every 100 born to women who took pregabalin in the first three months of pregnancy, were born with physical birth abnormalities. This is compared with four in 100 babies born to mothers who were not taking pregabalin or any other epilepsy medication in early pregnancy.

The study showed that the risk around pregabalin was higher than for the epilepsy medication, lamotrigine. Both lamotrigine and levetiracetam are thought to be the safest epilepsy medications to take during pregnancy.

The study could not prove that pregabalin was the cause of the physical disabilities.

Advice for women

It is important that any woman of childbearing age who is taking pregabalin, should seek the advice of her healthcare specialist. They will be able to discuss different treatment options and the use of effective contraceptives while taking pregabalin.

If you are planning to have a baby, you should discuss your treatment options with your healthcare professional before stopping contraception.

You should never stop taking your epilepsy medication without medical advice as this could result in more seizures which could, if you are pregnant, cause harm to your baby. 

More information

To read more and to access the patient information leaflet please click here.

Epilepsy Helpline

If you have concerns and would like to talk to someone about your epilepsy, please call our Helpline on 01494 601400 (Mon-Fri 9am-4pm, Wed 9am-7.30pm).

 Soure Epilepsy Action

Uk Epilepsy Priority Setting Partnership

In November 2021, Epilepsy Research UK launched the UK Epilepsy Priority Setting Partnership (PSP) in conjunction with the James Lind Alliance and NIHR. This once in a generation national survey is collating the views of the entire UK epilepsy community including people living with the condition, families, friends, carers, those bereaved by epilepsy, healthcare professionals and charity or patient organisation representatives. The priorities we are gathering will enable us collectively to:

Fund research based on evidenced priorities that matter most to people affected by epilepsyDrive collaborations with associated condition charitiesGenerate the evidence needed to influence government and institutional funders to give epilepsy an equitable share of research funding for epilepsy

 

We need your help

I am getting in touch to ask you to join us in sharing the UK Epilepsy PSP survey with your supporters and membership. By doing so you will enable the survey to build a more complete picture of the priorities of the epilepsy and associated condition community, which will provide more accurate evidence of need to convince funders to invest in research into epilepsy.

 

To ensure the UK Epilepsy PSP is truly representative, everyone must have their say. We want to hear from people living with and working in epilepsy, including rare epilepsies and associated conditions, and their families and carers. Whilst we have had an excellent response to the survey, we do need to highlight that we have had a limited responses from men, ethnic minorities, people aged 25 and under, and people aged 65 and over.

 

Our communications team have found the following methods most effective to promote the project:

Our E:bulletins have generated the most responses. Single issue emails, featuring just the PSP and with one survey link, have performed bestRegular social media posting – Facebook has been the most successful mediumOur website news piece about the PSP and linking to the PSP survey page also received good engagement

 

We have created a ‘UK Epilepsy PSP Launch social media toolkit’ which contains supporting materials and resources to assist you with any publicity, which can be found here.

 

We are acting now to ensure that innovations in the diagnosis and treatment of epilepsy and associated conditions will no longer lag behind other conditions.  The priorities of your community are an essential component of this programme of work.

 

Thank you so much for taking the time to consider this request, and please do not hesitate to contact us at ukepilepsypsp@eruk.org.uk.

 

 

 

 

 

A Quick Christmas note from the Ipswich Epilepsy Support Group

If I’m not just talking to myself depending on the severity of your epilepsy there are benefits out there that suffers of epilepsy may be eligible for so for form filling and any benefit related advice totally free and totally confidential contact the Ipswich Disabled Advice Bureau on 01473 217313 or contact your nearest advice service or Citizen Advice Bureau for addresses and phone numbers please go to the relevant website for more information. Our links tab also has some information. They are there to help you.

Depending on your situation you may also be eligible for Fuel and Food vouchers to find out more about this contact your nearest advice centre.

Don’t forget the group may be able to totally or partially fund aids adaptions and certain white good or respite care for people who suffer from Epilepsy in the Suffolk area subject to Committee approval and funding.

Finally the group would also like to wish everyone a Happy and Safe Christmas and a Happy New Year.

M.A.C.C.Y. D.

Why it’s a MaCCCy D for us

A big thanks to McDonalds for going the extra mile when a customer had a cluster of seizures in one of their branches. Not only did staff treat her with kindness and sensitivity, but the fast food chain also shared our ‘Calm, Cushion, Call’ messaging on their social media.

Brian’s daughter was with a friend in the Leisure Park branch of McDonalds in Stevenage when she had a cluster of seizures.

Brian  afterwards took to Twitter to praise the kind and caring member of staff, Nicola, who supported his daughter saying that she was “really caring” and “sensitive” and took time to make sure his daughter was ok, while other staff covered for her.

McDonalds added their thanks to Nicola and also shared our Calm, Cushion, Call messaging with their 240k followers on Twitter.

A spokesperson for Twitter told the Epilepsy Society: “We were really pleased to share your message with our Twitter followers. It really made my week to work on this.”

McDonalds also shared the 3Cs messaging with their 43,000 crew members via their newsletter, News Bites. 

Nicola Swanborough, Head of External Affairs at the charity said: “It is really good to hear how staff supported Brian’s daughter during a seizure. And we are very grateful to McDonalds for sharing our Calm, Cushion, Call seizure first aid message on their Twitter feed and through their newsletter. This is amazingly powerful in helping members of the public to understand about seizure first aid.”

Our 3Cs campaign ‘Calm, cushion, call’

Source Epilepsy Action

 

Safe Mum, Safe Baby, Campaign

Epilepsy Society welcomes new registry but calls for expansion
The Epilepsy Society has welcomed the publication of data from a new valproate registry but called for it to be expanded to include all anti-epilepsy drugs.

Last week the first in what has been promised to be a series of reports was released examining valproate use among women between the ages of 0 and 54.

The report includes key data taken from the Medicines in Pregnancy Valproate Registry and provides information on the number of women prescribed valproate from April 2018 to September 2020.

The report provides data for all women taking valpraote, regardless of their specific medical condition.

Data shows that 47,532 women were prescribed valproate during the period of study. Of these, 180 were prescribed valproate while pregnant, including 16 women who were prescribed the drug for the first time. A further 238 women stopped taking valproate prior to becoming pregnant.

The Epilepsy Society has welcomed the registry, which is maintained by the Medicines and Healthcare products Regulatory Agency (MHRA) and NHS Digital, but believes it does not go far enough.

On Tuesday, the Epilepsy Society launched our Safe Mum, Safe Baby campaign which seeks to ensure safer medication for pregnant women with epilepsy. As part of this campaign, we are calling for an immediate expansion of the Medicines in Pregnancy Valproate Registry to include all epilepsy drugs.

A recent report from the Commission on Human Medicines highlighted growing evidence that many epilepsy drugs, not just valproate, can cause physical and neurodevelopmental harm to a baby when taken by pregnant women with epilepsy. Although the risk of such harm is not as high as for valproate, it is nevertheless significant. Drugs highlighted in this report include carbamazepine, topiramate, phenytoin and phenobarbital.

Commenting, Nicola Swanborough, Head of External Affairs for the Epilepsy Society said:

“A registry that captures real-life experiences at grass root level is imperative if we are to understand the potential risks posed by epilepsy medications during pregnancy.

“We very much welcome the development of a valproate registry which is a testament to the families who have fought relentlessly to see this introduced.

“Now we must learn from their experience and ensure that the registry is expanded to include all epilepsy medications. That has to be a critical first step towards the development of safer epilepsy medications that won’t force women to choose between their own safety and that of their babies.”

It is clear that more needs to be done to collect and disseminate accurate data on the use of all anti-epileptic drugs in pregnancy.

While the MHRA have promised that they “plan over time” to include all epilepsy medications in the registry there is currently no clear timeframe for this.

The Epilepsy Society is calling for the registry to be expanded as a matter of urgency to include individual data relating to all anti-epileptic drugs, so that scientists and researchers can identify specific risk factors and develop safer treatment options.

At the Epilepsy Society we work closely with pregnant and postnatal women with epilepsy to ensure they have the best possible access to health guidance. A lack of data about commonly prescribed epilepsy drugs can therefore have serious consequences.

We believe that women need better, safer choices of medication. Through our Safe Mum, Safe Baby campaign we intend to make this a reality.

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Source Epilepsy Action

Some Myths about Epilepsy

Epilepsy myths

Epilepsy is often misunderstood with different facts and myths surrounding the condition despite over 500,000 people in the UK having epilepsy. We want to dispel the many myths that still exist and bring you important information about seizures, seizure triggers and epilepsy first aid.

MYTH 1: You shake and jerk when you have epilepsy

FACT 1: Not every seizure means a person shakes and jerks, nor is a person always unconscious during a seizure. Shaking and jerking while unconscious are usually associated with tonic clonic seizures. There are a range of seizures which have different side effects and can affect people differently. 

MYTH 2: Flashing lights cause seizures in everyone with epilepsy

FACT 2: Around 1 in 100 people has epilepsy, and of these people, around 3% have photosensitive epilepsy. Photosensitive epilepsy is more common in children and young people (up to 5%) and is less commonly diagnosed after the age of 20. Triggers differ from person to person, but common triggers include a lack of sleep, stress, and alcohol. 

MYTH 3: You can restrain someone during a tonic clonic seizure and put your finger in their mouth

FACT 3: During a tonic clonic seizure you should never hold the person down or put anything in their mouth. It’s important to know exactly what to do when someone has a tonic clonic seizure so that you can act quickly. 

MYTH 5: The only side effects of a seizure are tiredness and being confused

FACT 5: Having epilepsy can affect people in different ways. Knowing that a person ‘has epilepsy’ does not tell you very much about what happens for them or how epilepsy affects them. For example, some people may have problems with sleep or memory and for some people epilepsy may affect their mental health. 

Information updated: January 2021
Source Epilepsy Foundation