Monthly Archives: December 2021

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