Tuesday, 20 September 2011

Epilepsy is nothing to be scared of

I was very interested in Epilepsy Actions campaigning film alerting people how to administer first aid in the event of a person with the condition having a seizure.

I was interested because of my own child’s epilepsy but it also brought to mind a story which my husband encountered at work.

The manager of a maintenance department was approached by a local youth employment scheme as they were looking to place a young guy with epilepsy. I’ve changed his name

Tim started work and was notable because he worked hard, worked well and the office admin had never been as thoroughly and efficiently managed. It’s not an over statement to say he transformed the department in this respect.

His seizure activity was well managed and his self-esteem was boosted, which had an impact on the seizures.The manager was present for any seizures which were few and far between and these occurred with less than slight impact on anyone’s working day because everything had been re-organised by Tim so well.

The day came though when the Manager wasn’t present and Tim had a seizure. The response by the staff afterwards was nothing short of disgusting. They complained and they asserted collectively that it was inappropriate for Tim to continue to be placed there. The agency were involved and the manager fought hard for Tim to stay, but the weight of staff opinion was against them.

One member of staff had cited her pregnancy as the reason why Tim had to go.

Tim’s Dad arrived to collect his son and take him home. He was philosophical. He said that this had been the longest placement Tim had ever had, that it was a shame as he’d enjoyed it but that this was always the reason why the placement ended.

His experience of the system ensured that he didn’t want to “make a fuss”. Apparently this made finding other placements much more difficult.

It’s worth noting that this was an estates department of a hospital.

Ignorance and an irrational fear of epilepsy ended Tim’s placement.

I hope that a wider awareness of the condition and an understanding of basic first aid might help people to understand the person who lives with the condition because epilepsy doesn’t define or marginalise people, ignorance does.

4 comments:

  1. Fantastic piece. Thank you for this post that illustrates so well the stigma and lack of knowledge regarding epilepsy.
    Best,
    Jessica Keenan Smith
    Founder
    Living Well With Epilepsy
    http://livingwellwithepilepsy.com

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  2. I'd like to extend my own thanks too.

    I am myself a mother of a child with epilepsy and pieces like this serve well to prepare me for the kind of prejudices my daughter is likely to experience in adulthood.

    Melissa

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  3. Jessica and Melissa thank you both so much for your lovely comments.It's crucial to try and lessen stigma as you both know so well. All Love Nicky x

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  4. I am an epileptic adult and i know all to well about how the stigma of living with Epilepsy can make life had but in my 33 years of living with it I have found it easier not to say anything to any one unless absolutely necessary. I use to have seizures daily but for the last 10 or 11 years i have been seizure free and not medicated any more but i am aware of the fact they can come up later in life maybe and i will always be ready if that day ever comes... GOD I HOPE IT NEVER DUZ

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