When our daughter was first diagnosed with epilepsy, we were in a tailspin of fear and confusion. We did not know why she was crashing to the floor 20 times a day; tests were being done and by the look on the doctor’s faces, and the room full of people, I knew this was not ‘just one of those things’.
At some point during this blur of terror, we were introduced to our epilepsy nurse. Let’s call her Sarah (not her real name).
My husband met her first and I clearly remember him saying on the phone to me, (he was at the hospital and I was at home with our other child), “I’ve had a brilliant chat to Sarah, she’s lovely.” I knew at this point that she was going to play a significant part in our lives, but I did not know quite how instrumental she would be in us living with this terrifying condition.
Epilepsy nurses are specialist nurses who support people, and families of people, with epilepsy. I could not have foreseen the pivotal role that Sarah would play in our lives.
Sarah is our first port of call for just about anything.
Here are just a few of the stand-out ways that Sarah has helped us over the last 7 and a half years that she has been in our lives.
- She is on the end of the phone / by our hospital bed / at our daughter’s school when things go haywire. Our daughter’s seizures can get very bad at any time, and Sarah is always there to help us and guide us through. She has listened to me cry in despair on the phone in the car park outside of my office; she provides perspective, reassurance and practical advice, with our wellbeing front of mind, as well as our daughters.
- She has empowered us to live with epilepsy. This is a terrifying condition to live with. You could end up shutting yourself away and not living life, but Sarah has given us the confidence to do things. I always remember a time when a hospital consultant (who did not know our daughter) suggested we think about cancelling a (local) camping holiday after our daughter had been in hospital for a seizure. I was gutted, and found myself waving goodbye to the rest of the family as I prepared to stay at home with our daughter. Then my phone rang. It was Sarah who had heard what had happened.
She reassured us that of course we could, and should go.
She then started to help me make practical plans about how we may get to the holiday ‘could you meet them at junction x’ etc. I felt so cared for and thought about. It is hard to describe how life changing this kind of support it. We went on holiday (which was without incident) and had the best time.
- We once accidentally gave our daughter too much medication. Sarah was a calm voice on the phone, reassuring us that she’d be fine and we were not the only parents to have done this (she could hear the guilt in our voices and knew we needed reassurance).
- We have, on more than one occasion, forgotten to order meds. Sarah never makes us feel bad, she just sorts it out. I can almost see the twinkle in her eye / kind eyeroll as she knows we can be a little scatty about these things. She handles it all with such kindness as she knows the last thing we need is to be made to feel bad.
- She works directly with the school nurse to ensure all our daughter’s needs are met and to reassure the school that they can handle things. I don’t have to get caught in the middle, this is a huge weight off my shoulders.
- She writes letters, reports, whatever we need to help us to get the support that our daughter needs, be that for DLA or EHCPs.
As I write this, Sarah is holding an online training session for all of our daughter’s new enabling team members.
This is the third session like this she has done for us.
Reading this, it sounds like a full time job to be a nurse for one child. Sarah’s case load is in the hundreds. She is juggling all of this, responding to us and other families crises and day to day needs as they suddenly, and without warning, arise (epilepsy is like that). I can only imagine it is like a gigantic game of extremely fast whack-a-mole, with Sarah a blur in the middle, as she tries to keep all of the families afloat.
Through my networks of other parent carers I know that in some areas, there are no epilepsy nurses. This is unimaginable to me. We need many more epilepsy nurses, not just in areas where there are none, but we need more to support those who are already carrying out this super-human role.
I genuinely could not imagine life without the support of our epilepsy nurse.
Epilepsy nurses: you are AWESOME.