People with epilepsy are in danger of having no where to turn when they need expert and often life changing support …. Half the calls to Epilepsy Action are missed due to lack of funding and increased demand. This sentence alone from Epilepsy Action made me go cold. THe whole reason I started blogging was a lack of support, and now one of the biggest epilepsy charities have confirmed my fears that people with epilepsy are not getting the support that badly need and deserve.
Epilepsy Action state that last 12 months have seen a marked increase in calls from people desperate to control their seizures as well as concerned families. 1 in 2 calls a day go unanswered, can you imagine being at your lowest point and your calls go answered. At present the charity run a week day helpline but are now looking to extend their hours to week nights and weekends, they can only do that with your donations which are vital to keeping the service going. When my own seizures returned at 21 I often called the helpline with a quick query that I didn’t want to bother the neurology team with, so I know first hand how vital this service is. To donate to Epilepsy action text PURPLE to 70500 the text will cost £5 plus your normal network rate and Epilepsy Action will receive 100% of your donation.
The calls the helpline are receiving are varied and range from medication, benefits to pregnancy and driving, with advisors offering vital support and signposting. The helpline has seen a huge rise in calls because of the national coverage of the effect of Sodium Valproate and its effects on unborn children during pregnancy, it is a real concern for women.
Diane who has been an advisor on the Epilepsy Action helpline for 22 years said “Some people can be quite desperate when they get through to us, sometimes sadly, even suicidal. In many cases, they have no one else to turn to. People can be lonely, scared and anxious. Some calls can be long because there is a lot they need to say. We aim to give people the time they need,but that sometimes means missing other calls in the queue.”
Deaths in people with epilepsy have increased by 70% and people with the condition now die on average eight years earlier than the rest of the population, according to new figures from Public Health England (PHE). The report also found that people with epilepsy are three times more likely to die from their condition if they lived in a deprived area. Epilepsy Action and SUDEP Action say these figures paint a stark picture of health inequality in 21st century England. Epilepsy care should NOT be a postcode lottery.
“With the right care and support 20% more people with epilepsy could be seizure free, the health inequalities faced by people with epilepsy must be addressed immediately. Better seizure control would improve their lives and could ultimately reduce the likelihood of death associated with the condition.” States Epilepsy Action chief executive Philip Lee, he also called the report findings “shocking” and “completely unacceptable.” This follows a joint letter from Sudep Action, the Association of British Neurologists, the British Chapter of the International League against Epilepsy and the Neurologist Alliance to the Sunday Times, calling for urgent action to be taken to protect society's most vulnerable.
I write this today on Purple Day with my own fuzzy head following a seizure last night, so I apologise for any ramblings. Today I watch as my Purple family have pulled together to spread the word, to ensure nobody with epilepsy ever feels alone. I can only thank God that I found these incredible people who are more than friends, who make the dark days better. Please today, wear your purple, mention to just one person what today is and share this blog. Your help and support will ensure lives are saved, that we get the support we need. Once upon a time I didnt live with epilepsy, its strikes without warning and without prejudice, awareness is the key to improving the lives of those with epilepsy. Happy Purple day to you all whatever you may be doing, may it be a happy, healthy seizure free one.
If you have been affected by an epilepsy death, contact the SUDEP Action bereavement support team on 01235 772852.
If you have epilepsy and need to speak to someone for advice, contact the Epilepsy Action Helpline on 0808 800 5050.
Facebook support group: https://www.facebook.com/groups/739520702798749/
My names Faye, mostly known for being a tea addict and keen runner. I'm 31, married and I had my 1st child in June 2015, oh and I also happen to have epilepsy. This is my story of Pregnancy, Motherhood & Epilepsy.