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When Cece Met A Real Life MP – Speaking Up for Epilepsy

“People with epilepsy are dying prematurely because of poor neurological care”

“The Department of Health need to invest in improving neurological services”

The interior of Wanstead House alone, although incredibly beautiful, is an intimidating experience.

Wanstead Park
I felt incredibly under dressed for the occasion…..

As I sat in the waiting room, attempting to mentally untangle the knots in my stomach, I wondered I was making a huge mistake.

In March, I volunteered to become a campaigner for the Epilepsy Society; to be honest, I hadn’t asked for many details. Being Epileptic myself, (I have focal onset epilepsy with partial complex seizures and secondary generalized tonic clonic seizures) not only is living with the condition a daily struggle; it’s also a daily battle against constant stigma.

The Epilepsy Society’s latest campaign – Speak Up For Epilepsy – seeks to encourage as many people as possible to meet with their local MPs, in order to encourage the Department of Health to commission a new audit into preventable deaths in epilepsy. Whilst an audit had been done in 2009, unfortunately not much had been done since. Therefore, Epilepsy Society’s aim is that through this new National Sentinel Survey, strategies can be put in place to eradicate avoidable deaths.

Being a part of something bigger than myself, which also affected myself, convinced me to push my fears of speaking to people aside, and on 7th April I met with Mr John Cryer – Local MP for Leyton and Wanstead – at his surgery at Wanstead House to discuss the latest Epilepsy Society Campaign.

“I can do this”, thought I, as I bit into the sides of my fingers. As I always do when I am incredibly nervous.

From the moment I met Mr Cryer, it was evident that he was a man for the people. With his surgery running slightly late, he personally kept all those waiting to see him informed and assured. As he led me up the stairs of this colossal house, he joked about not needing to ask me if I was ok to walk up the stairs and hoped that he hadn’t been wrong in assuming this as that had once gotten him into trouble before (which instantly made me envision an angry old lady hitting him with the walking stick he had failed to see before!)

His aide was already seated, ready to take notes and from the moment I began to speak, Mr Cryer was enthralled by the campaign as well as my story – particularly when I relayed my own personal experiences with GPs and the unfortunate case that as like me, many people with epilepsy fail to be diagnosed for an extremely long time (for me it was 20 years). Of course there is the case of medical negligence, however, the problem with the last audit was that very little had been done since, in order to educate clinicians on being able to recognise the symptoms of epilepsy so that patients can be swiftly referred to secondary care for a diagnosis.

The last audit furthermore, highlights the tragic fact that in less populated areas of the country, access to specialty care is extremely poor. In fact, at times nonexistent. Moving to London so soon after my diagnosis was a frightening decision for me. However, it was also the best decision I could’ve made because it gave me access to an amazing Epilepsy Specialist and Neurology team at Homerton Hospital, which I didn’t have while living in Kent (where I was originally diagnosed). In 2009 in fact, 60% of acute trusts did not employ an Epilepsy Specialist Nurse (ESN).

 

It is estimated that over 500,000 people in the UK have epilepsy.

That’s one in every 100 people.

We need 1100 ESNs across the country to meet the ideal number and there are currently only around 250.

 

As I also suffer from depression, I was also eager to discuss the difficulties people with epilepsy face in regards to mental health. We want the Department of Health to invest in new screening tools to not only help with the early detection and treatment; we also want more established support for our mental health. Having epilepsy is incredibly dark and isolating and at the moment, unfortunately the burden of support seems to lie with charities such as Epilepsy Society and Epilepsy Action.

This information seemed to visibly move Mr Cryer, and more so when I informed him that for some, life expectancy is reduced by up to 10 years. With new information from an up-to-date audit, we could largely improve the quality of life for these people.

Just a few weeks or so before this, I had been told by my own ESN that with medication not working as effectively as hoped, this meant that my epilepsy was a lot more serious than originally thought. This was henceforth creating a concern for my quality of life and future. Imagine being told that at the age of twenty-nine.

I was impressed to hear that Mr Cryer had in fact, heard of the Epilepsy Society and he embraced my request to act on our behalf and to get behind the campaign.

And true to his word, a few weeks later, I received a letter from him to confirm that he had written to Jeremy Hunt and would keep me updated in his response.

Many have called me naïve to believe that this meeting can change anything, and perhaps they are right. However, I cannot stand by and do absolutely nothing at all, and I left Wanstead House that afternoon reassured that neither could Mr Cryer.

So join the fight.

 

Author:

My body remains on the sidelines watching, while my mind roams around the room, taking in the world around her. I am a wallflower. There could be two reasons for this: It could be due to me being an introvert or just that I am a Cancerian! I’m Cece Alexandra and I am so honoured that you’ve been led to delve into my thoughts here in this blog! I would describe myself as a Wallflower which is why I use words to express my deepest – and sometimes darkest - thoughts. Words have always been my strongest method of expressing myself. Growing up I always wanted to be a writer, however life and circumstances chipped away at my confidence until there was nothing left. Without words, I could no longer express myself. I am also Epileptic. Since being diagnosed, I have realised that my deepest fear is the day I am finally on my deathbed, haunted by the overwhelming regret that I never achieved my God-given potential. This realisation forced me to take a step of faith and put myself out there. Yes it makes me vulnerable, however within the process I not only want to be an inspiration to myself; I want to be an inspiration to other women – to be whatever you want to be. Embrace the fear and doubt and utilise that as the fuel you need to push through! Life is for living to the fullest. Life is for loving, for living true to yourself and to the people around you. Life however, can also be crippling, dark and overwhelming. But you are not alone. This thought alone is what will help you get up from the ground.

One thought on “When Cece Met A Real Life MP – Speaking Up for Epilepsy

  1. So many familiar remarks… epilepsy really is harsh. I wasn’t diagnosed till I was 26, and four years later I still can’t work or get out of bed most days.

    Good on you for stepping up. I hope to one day get better and become a youth worker, I think all the horrible crap I’ve gone through can help me empathise with them. But doing what you did… I would have been chewing my fingers too. That again sounded familiar. But I can’t imagine stepping up to do something like this, so kudos! 🙂

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