Purple Day 2018: “Significant improvements need to be made to epilepsy services”

Epilepsy is a neurological condition and affects over 600,000 people in the UK and 25,000 people from the North East.

The condition is variable; people with epilepsy will often have very different experiences. It affects the brain and causes over 40 different types of seizures.

Epilepsy is still a misunderstood condition. A study conducted by the charity Epilepsy Action confirmed 28% of people incorrectly think that epilepsy is a mental condition and 43% of people would not know what to do if someone had a seizure in public.

A Public Health England report published in February highlighted a 70% increase in epilepsy-related deaths between 2001-2014. Charities such as Epilepsy Action believe this shows need for improvement in epilepsy services.

Daniel Jennings, Media Officer for Epilepsy Action, believes there is not enough support and awareness being raised for epilepsy.

He said: “The findings of recent reports highlight how significant improvements need to be made to epilepsy services. Unfortunately, we regularly hear from our members that there is still a lot of misunderstanding and misconceptions around the condition.

“People with epilepsy still experience problems finding employment, in education, and in claiming benefits such as Personal Independence Payments (PIP). Epilepsy still has the highest refusal rate for people claiming PIP – 23% above the national average for other health conditions. This means people with epilepsy are more likely to be denied the financial support they need to help with the extra costs of living with a hidden and unpredictable disability.

“That’s why it is important that Epilepsy Action continues to raise awareness and understanding of the condition.”

Vicky McGreevy from Epilepsy Action Tyneside has voluntarily ran the branch for 10 years. She expressed how any attempt to raise awareness of Epilepsy in the UK is ‘largely ignored’.

“From my personal experience of organising awareness-raising events in Tyneside, I feel as though it is difficult to catch the attention of people who do not have epilepsy or do not have any close friends or family with epilepsy – the people who you really most need to communicate with.  People are often under the impression that they already know all about epilepsy – they go on to describe the stereotypical epileptic seizure which has been synonymous with the term “epilepsy” for generations.

“This is a perception I personally strongly feel needs to be driven out of society – people should be informed of the other seizure types and how to recognise and deal with them.”

She further expressed how there is evidently a lack of support for children with epilepsy and their families in the North East.

“Unfortunately, when people with epilepsy and parents of children with epilepsy contact the branch, I have to explain to them that all I can offer is our branch support group.  It is particularly sad when I have to tell this to parents of children with epilepsy, as the support group continues to predominantly attract adults with epilepsy, so parents of young children really have no local networking opportunity.”

Epilepsy Outlook Hartlepool- Operations Manager Jacqui Gettings and Outreach Worker Elaine Bartholomew support Purple Day

Purple Day on Monday 26 March aims to raise awareness of the condition by urging everyone to wear purple and organise fundraisers.

Megan Cassidy, a Canadian girl who has Epilepsy and aims to raise awareness, founded the day in 2008.

Epilepsy Outlook in Hartlepool is also supporting Purple Day.

Jacqui Gettings, Operation Manager for the charity, said: “Awareness is vital, both for those with epilepsy and the wider community- events like Purple Day help to focus understanding of the condition- something Epilepsy Outlook works hard to promote”.

Epilespy Action also added how they are promoting this year’s annual event.

“For Purple Day this year, Epilepsy Action is focusing on the life-changing work of the Epilepsy Action Helpline. It is the only epilepsy helpline providing information accredited by the NHS England ‘Information Standard’

We have also been encouraging people to support Purple Day by arranging fundraising events, which we help people organise through our Purple Day packs. The packs provide an organiser’s guide and other resources to help people hold an event.”

For more information on how you can get involved this Monday or to order a Purple Day pack, visit  https://www.epilepsy.org.uk/

 

 

 

 

 

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