I’ve just returned home from an appointment with my GP, sobbing yet again about the injustices of being epileptic.
Every year I usually get a flu vaccination, which is free on the NHS for certain patients. I’m entitled to this because I used to use inhalers for my asthma. However, once I became diagnosed with epilepsy in 2014, all my other ailments became relegated to the Championship League – so much so, that I even forgot to carry an EpiPen with me and last week when I had a severe allergic reaction to cashew nuts and went into anaphylaxis shock, all I had in the flat was some “Piriton”, so I nearly died and ended up in hospital.
My asthma is well controlled, so I no longer use inhalers. However, my epilepsy isn’t. Therefore, all my focus has been on trying to gain control of my seizures.
The only year I missed getting a flu vaccination was last year, because I couldn’t get the time off work. I got the flu and it was dire: the flu didn’t affect my asthma, it affected my epilepsy. Going into a febrile condition, led to an increase in my usual focal onset seizures to the point where I was almost comatose. Unfortunately for me, this happened while I was abroad so isn’t on my medical records.
This year I wasn’t going to make the same mistake again, however when I tried to book an appointment for a flu vaccination, I was refused because not only am I currently not using inhalers for my asthma, according to NHS England, patients with epilepsy are not eligible for a free flu vaccination. When I was told by the GP receptionist that I would have to speak to the GP to “argue my case”, I was shocked.
According to NHS choices, patients with chronic neurological conditions, such as Parkinson’s disease, motor neurone disease or multiple sclerosis (MS) are offered a vaccination. Why isn’t epilepsy listed? Epilepsy is a chronic neurological conditional. In fact, according to the World Health Organisation, it’s one of most common globally. Yet we’re constantly forgotten, and stigimatised.
On the Epilepsy Action website, it clearly states that having an illness which causes a febrile condition / high temperature (flu) is a trigger for seizures, which I also confirmed with my epilepsy nurse specialist.
When will patients with epilepsy stop being treated as second-class citizens by the NHS?
If I could return to my opening sentence, the reason for coming home in tears was because when I tried to open up a conversation about epilepsy and influenza with the GP she completely shut me down; I didn’t even get to “argue my case”. In the end, the only reason I received a flu vaccination this year was because of my history of asthma, even though my peak flow rate measured as normal and now I have a prescription for two inhalers, which I don’t even need.
When all I really needed was a flu vaccination for epilepsy.