Monthly Archives: July 2022

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, 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