Epilepsy News: October 2017

Epilepsy News: October 2017

Hello and welcome to the news on October 24: I’m Joe Stevenson.

Once again, there’s been enough to say about epilepsy – although once again, the most eye-catching material hasn’t been so positive. But that’s just like standard news on so many websites. In one way, I can only assume The Epileptic Man is running things pretty well.

Unfortunately, a lot of problems come with the condition all the time, and as time has continued with me writing this blog, I’ve only grown more passion for being a true epilepsy advocate. I feel a need to contribute more, have my ideas lined up, and will be looking for readers to support me with what I do.

Publishing this post happens to be quite a proud moment for me too. It’s the 30th article I’ve written about epilepsy for my blog. I hope you all get something good out of it.

Time to use the Gift of the Gab

Last month’s headline news reiterated the poor efforts to inform pregnant women with epilepsy, and it’s an important story that I’ll be keeping an eye on. Things have happened since – charities have continued to spread the word as they should, and some efforts by MP’s for progress and potential compensation came along too.

A scheme began in February 2016 to bring more awareness to the potential abnormalities that can be passed your baby when pregnant, but little success was managed. Sodium valproate, also known by its brand name Epilim, is the culprit when abnormalities, unfortunately, take place.

Epilim Medication Strips
Two strips of sodium valproate or Epilim medication

Now, like most Brits, I don’t believe politicians should be made into superhero’s any time soon. But like me, Labour MP James Frith is a man who’s been subscribed to sodium valproate before. He’s been luckier with epilepsy than I have, but is somewhat of a former sufferer, and again similar to myself by saying he was “stunned” when he heard about the disappointing results of the campaign last month. He described the efforts made as a ‘national scandal’.

It’s said that nearly 400 babies have been affected since 2016’s campaign started. Mr Frith called upon the government to offer compensation, ensure that no health or medical information is withheld again, and “apologise to the women and children who are now men and women themselves”.

MP Jeremy Hunt recently responded to the Epilepsy Society after they wrote to the health secretary and requested mandatory annual reviews for any woman or girl of childbearing age. This request would ensure they have a yearly conversation with their doctor about the risks of taking valproate medication during pregnancy.

Given that he failed to address their request, his response was disappointing. They’ll be writing to him again, and if you’ve got any comments you’d like to address in their next letter, then you can add comments on the webpage that revealed the MPs recent response to the issue.

The European Medicines Agency is considering whether to take further regulatory action. I’ll keep my fingers crossed for those affected by valproate, but won’t hold my breath when waiting.

Your PIP Just Ain’t Good Enough, Gov.

Ever since people with epilepsy have had to be reassessed regarding the removal of Disability Living Allowance (DLA) and the invention of Personal Indepedence Payment (PIP), it’s been a big problem for people with epilepsy. DWP Statistics now show that around half of the people with epilepsy (48%) who were reassessed have had their award refused. This figure is almost double the percentage other health conditions (25%) and gives epilepsy the highest refusal rate for people now claiming PIP.

After having the assessment myself recently, I explained everything about my disability to the assessor to try and make sure she understood it in detail. She nodded along most of the time, but I don’t know if I’ve got any source of extra income yet.

PIP Information Booklet
Prior to the one-to-one assessments, PIP forms are difficult enough to fill in alone

So many stories have been shared this month about people with epilepsy losing substantial amounts of monthly income. In a survey, 87% of people who had the assessment also felt that the assessor did not have an understanding or knowledge of epilepsy. It’s believed that they simply have inadequate training to assess people with epilepsy, and this needs to change.

If you’re willing to get involved, then Epilepsy Action has a webpage that gives you information on how to make a PIP pledge for people with epilepsy to your MP. As busy as I am writing my blog posts, this is something I’ll be looking to do soon.

Lack of Awareness Keeps Crawling in Schools

This month, a survey showed that less than half of families who have children with epilepsy say school staff are trained to support their child’s needs. As well as that, one in three children in schools doesn’t have an individual healthcare plan to support them (IHP), which means staff at those school could well be lacking any knowledge of what to within an emergency situation.

Primary School Pupil Alone

And when IHPs are in place, problems still frequently occur; two out of three plans don’t even consider how epilepsy affects learning, despite the risk that epilepsy has on impacting your child’s learning and behaviour.

I wish it was a fact that stunned me a bit because to children, it seems so unfair. But as a sufferer, I know epilepsy awareness is just so low! It’s these sort of problems that can’t be ignored. We need to get more people affected by epilepsy motivated and making an effort to get rid of the problem – so check out this blog post on how you’ll be able to do that.

Mike Skinner is Motivated

After gathering my degree in BA Popular Musicology, I feel a duty to announce this little bit of good news first. It regards somebody who I labelled as an ‘epileptic celeb’ in August – Mr Mike Skinner – a British rapper, DJ and lead singer of the electronic group The Streets.

The Streets are going on tour for the first time in seven years in 2018. It’ll include trips to Manchester, Glasgow, Leeds, London, and their home city of Birmingham.

Mike Skinner

Mike Skinner recently stated: “I’ve missed tour buses very much, which is the least of the reasons why I have decided to tour The Streets again. The other thing I’ve missed is trying to thing up what I’m going to saying in the gap between songs.

“When you DJ they tell you that you don’t need a tour bus and you don’t need to think up things to say between the songs. But seriously, it’s been long enough. With my Tonga parties, the new rap and grime MC’s I have been producing and the DJing, I have been living with music since making The Streets for nearly as long as I made The Streets.

“I’m not the guy smoking in the car anymore though, I have become the guy in the club, so I hope I will be excused for putting on after parties in nightclubs after every show.”

Labelled as their ‘The Darker The Shadow The Brighter The Light’ tour, tickets are now on sale.

Travelling Through Gadget Time

The main aim of technology I talk about on here is to warn people either of upcoming seizures or when seizures have already come through, so a better timed intervention can be made.

One thing that caught my eye was a vest that’s currently out on tour, and how young the inventors happen to be: David Bernstein and Sankha Kahagala-Gamage are still grammar school students. Reigning UK Young Engineers of the Year, the duo went forward to produce the vest after witnessing someone having a seizure.

Grammar School Students E1 Vest Presentation
Sankha and David presenting E1, a wearable vest made for people with epilepsy

The students have named the vest ‘E1’, and it can detect upcoming seizures, sending a warning text message to both the epileptic wearer of the vest and their carer.

They’ve recently presented their invention at the Royal Society of Medicine’s Medical Innovations Summit, and taken part in the China Adolecent Science and Technology Innovations Contest in Hangshou, where they won two awards. Most recently they visited Estonia to take part in the EU’s Contest for Young Scientists.

I’d be so honoured to meet these masterminds and shake their hands myself – they didn’t walk away from a seizure; they respectfully stood by it. Loughborough Grammar School headmaster Duncan Byrne also stated that “We are very proud of Sankha’s and David’s success which has been borne out of their desire to make the world a better place for epilepsy sufferers.”

Discovering What’s Positive

Although they tend to be pretty complicated and tricky to explain, discoveries keep happening that will show the scientific progress that could be handy for sufferers in the future.

This month, I can tell you that Epilepsy Research UK provided us with information about how children with epilepsy seem to lack a type of protein that’s more specifically known ‘CLOCK’. Apparently, CLOCK is one of many proteins that help our body to function normally.

Now that they know this, it might be a starting point for new type of epilepsy treatment that could potentially be more effective. If you’d like to know about this in more depth, you can read about the study here.

As well as that, a discovery was made at Bristol Medical School this month. According to a study, cooling babies deprived of oxygen at birth can reduce the number of children who develop epilepsy later in childhood. The study was published in the journal Epilepsia, although it’s better to view the University of Bristol’s website to find out more.

Analysis

Keeping it short, I just feel more need to make every person aware of what epilepsy is, because that seems to be the main problem in negative events. The Government includes a load of politicians that lack the knowledge needed to see epilepsy as a difficult disability to manage.

Disabled Protest Against PIP
Disabled people protesting against the switch of DLA to PIP in 2016.

If those in charge saw it properly, then they may have put more effort into raising the awareness of NHS staff, pregnant individuals, PIP assessors, and school staff as well. I also said ‘may have’ because I believe the Government don’t seem to respect disabilities as much as they should. You can find out more about that in August 2017’s Epilepsy News.

I am a man who likes to stay positive though, and I felt happier this month when I heard about Mike Skinner’s new-born motivation to get The Streets moving again. It’s further proof of one fact: every single person who has epilepsy can find the motivation they need to grab some attention in life and make people aware of themselves.

If more people with or affected by epilepsy choose to do this, then more people can help make others truly aware of what epilepsy is. As a reader of my blog, it’s one thing I hope you will certainly consider to help us all.

Take care.

E1 Vest by Independent School Parent / A Primary School Student by Hank Lee / Norwich disability protest by Roger Blackwell / Mike Skinner (The Streets) by Joerg Halstein
Did you enjoy this article?
Signup today to receive free email updates on any epilepsy-related blog posts once a week. Your details will not be shared with a third party.

Leave a Reply

%d bloggers like this: