Changes to your right to have BRANDED epilepsy medicines

Some worrying new guidelines have been recently given by Medicines and Healthcare Products Regulatory Agency which are not in line with the NICE guidelines which state:

“Consistent supply to the child, young person or adult with epilepsy of a particular manufacturer’s AED [epilepsy medicine] preparation is recommended, unless the prescriber, in consultation with the child, young person, adult and their family and/or carers as appropriate, considers that this is not a concern.”

The Medicines and Healthcare Products Regulatory Agency have put AEDs into 3 categories as to the importance of having the same brand each time…

Category 1 – Phenytoin, carbamazepine, phenobarbital, primidone 

For these drugs, doctors are advised to ensure that their patient is maintained on a specific manufacturer’s product.

Category 2 – Valproate, lamotrigine, perampanel, retigabine, rufinamide, clobazam, clonazepam, oxcarbazepine, eslicarbazepine, zonisamide, topiramate 

For these drugs the need for continued supply of a particular manufacturer’s product should be based on clinical judgement and consultation with patient and/or carer taking into account factors such as seizure frequency and treatment history.

Category 3 – Levetiracetam, lacosamide, tiagabine, gabapentin, pregabalin, ethosuximide, vigabatrin 

For these drugs it is usually unnecessary to ensure that patients are maintained on a specific manufacturer’s product unless there are specific concerns such as patient anxiety, and risk of confusion or dosing errors.

If your take an epilepsy medicine that is in category 2 or 3 of the MHRA guidelines, your doctor might not want to prescribe you the same brand. However, you could ask your doctor if you could stay on the same version if:

• The thought of changing makes you feel anxious or confused, or
• You think you have had side-effects eizures because you have been prescribed a different version of your epilepsy medicine

You can ask your doctor to write ‘no parallel imports’ on your prescription, but the pharmacist doesn’t have to take any notice of this.

The most reliable way to get the same version is to ask your doctor to write the brand name on your prescriptions. If the brand is written on your prescription, the pharmacist must give you that specific brand, by law.

7th March is National Doodle Day!

Tomorrow is National Doodle Day!

Like many good ideas National Doodle Day began over a drink with friends. From a simple idea grew a unique, fun and fantastically simple fundraising event that everyone could be a part of.

Over the years the event has seen thousands of celebrities, schools, individuals and organisations come together all in the name of doodling!

By simply donating a pound to do a doodle over £275,000 has been raised to help support the 600,000 people in the UK living with epilepsy.

Find out more and check out lots of celebrity doodles visit the website - http://doodle-day.epilepsy.org.uk/

So many inspirational people ~ changing others lives

At the award ceremony for the Epilepsy Action volunteer awards I met a lot of very inspirational people.  Amazing people who have done so much good following so much loss.  Families who have lost children and brothers and sisters to epilepsy.  Who have raised so much money to try to make sure other families don't have to suffer like they did and to remember what they have lost and what they would have wanted.

I don't know how they do it and when they stood up and accepted their awards, spoke from the heart about those they had lost, I don't think anyone wasn't moved.  I know I was choked up when I went to get my award.  They are an inspiration to us all and should motivate us to do as much as we can to make a difference in this world.

Promotion of public information and awareness award

I feel very proud to have won an award for the work I have done to help promote, well, in the words of this blog... becoming a mum with epilepsy! 

Epilepsy Action Volunteering Awards 2014: Promotion of public information and awareness category - Clair Cobbold

Clair has uncontrolled epilepsy. In June 2012 she gave birth to her first baby, daughter Riley. Thankfully for Epilepsy Action, Clair kept a diary throughout her pregnancy. This diary resulted in Clair becoming the first of our Pregnancy Diary writers of 2012, sharing her personal experiences of her pregnancy and parenthood journey. http://www.epilepsy.org.uk/node/62142

The Pregnancy Diaries was recently Highly Commended at the BMA Patient Information Awards and Clair played a big part in ensuring our resource was of such a high quality.

Clair, together with Riley, became the main ‘poster girl’ of our HealthE mum-to-be campaign. She also completed several media interviews, including local radio and newspapers and appeared in a double-page article in national magazine Prima Baby. Clair is ever willing to help, and happily agreed to be the face of The Guardian’s Mediaplanet supplement in National Epilepsy Week, being interviewed for the supplement and featuring on the front cover.

Clair is an amazing advocate of Epilepsy Action and regularly promotes our work and website on her own blog. She is very open about her own experiences and difficulties. The women we are trying to reach with our women’s campaigns have really warmed to her.

Clair hosted a workshop for parents with epilepsy at the London Weekend for all in November 2013, and spoke in the main hall for the event. She did a great job, not only raising awareness to help other mums and mums-to-be with epilepsy, but inspiring the audience.

Clair is a fantastic ambassador for the HealthE mum-to-be campaign. We simply couldn’t have run such a successful campaign without her support.

The Pregnancy Diaries was recently Highly Commended at the BMA Patient Information Awards and Clair played a big part in ensuring our resource was of such a high quality. 

Clair, together with Riley, became the main ‘poster girl’ of our HealthE mum-to-be campaign. She also completed several media interviews, including local radio and newspapers and appeared in a double-page article in national magazine Prima Baby. Clair is ever willing to help, and happily agreed to be the face of The Guardian’s Mediaplanet supplement in National Epilepsy Week, being interviewed for the supplement and featuring on the front cover.

Clair is an amazing advocate of Epilepsy Action and regularly promotes our work and website on her own blog. She is very open about her own experiences and difficulties. The women we are trying to reach with our women’s campaigns have really warmed to her.

Clair hosted a workshop for parents with epilepsy at the London Weekend for all in November 2013, and spoke in the main hall for the event. She did a great job, not only raising awareness to help other mums and mums-to-be with epilepsy, but inspiring the audience. 

Clair is a fantastic ambassador for the HealthE mum-to-be campaign. We simply couldn’t have run such a successful campaign without her support.

The Pregnancy Diaries was recently Highly Commended at the BMA Patient Information Awards and Clair played a big part in ensuring our resource was of such a high quality. 

Clair, together with Riley, became the main ‘poster girl’ of our HealthE mum-to-be campaign. She also completed several media interviews, including local radio and newspapers and appeared in a double-page article in national magazine Prima Baby. Clair is ever willing to help, and happily agreed to be the face of The Guardian’s Mediaplanet supplement in National Epilepsy Week, being interviewed for the supplement and featuring on the front cover.

Clair is an amazing advocate of Epilepsy Action and regularly promotes our work and website on her own blog. She is very open about her own experiences and difficulties. The women we are trying to reach with our women’s campaigns have really warmed to her.

Clair hosted a workshop for parents with epilepsy at the London Weekend for all in November 2013, and spoke in the main hall for the event. She did a great job, not only raising awareness to help other mums and mums-to-be with epilepsy, but inspiring the audience. 

Clair is a fantastic ambassador for the HealthE mum-to-be campaign. We simply couldn’t have run such a successful campaign without her support.