Mother shares her honest review on Casualty epilepsy storyline
Lisa Thurston, mum of Young Epilepsy Inspiration Champion Award winner 2015, Owen Thurston, shares her thoughts on Casualty’s recent episode, which explored a young man deciding on epilepsy brain surgery as well as experiencing a seizure.
This episode of Casualty came at the end of a pretty tough few weeks. Owen had his first consultation without us and made the bold decision to change his medication; we had subsequently done battle with our GP Practice Manager over issuing Owen’s complicated transition prescription. We had spoken to the disability officer at one of the universities Owen is considering for his education next year and at the All Party Parliamentary Group for Epilepsy meeting in Westminster, I had listened to a mother tell the tragic story of losing her teenage daughter to SUDEP (Sudden Unexpected Death in Epilepsy).
The subject was a bit too close to home with Rhys wanting to be allowed to take ownership of his condition and being able to have a say in the treatment – in this case brain surgery. Blimey, I felt for his mum! No one would happily and willingly expose their child to such an invasive procedure without many anxious hours having been spent weighing up the potential benefits against the risks. She, like all of us, thought she was doing the best for her son.
Rhys was also fighting against the safeguards that had been put in place for him including a mentor, which stayed with him constantly at school (even standing outside the toilet door). I can remember Owen being offered this by his school when he was experiencing a seizure every three weeks, but Owen was adamant he didn’t want that. It wasn’t something we wanted either but when we are on red or amber alert, as we are now in this drug transition stage, we are extra vigilant in reminding Owen to wear his medi-id band, Epilepsy Passport and his emergency meds. He may be almost 18, but that doesn’t stop us feeling angry, frustrated and sick to our stomachs with worry when we realise he has left all these safeguards at home and is on a train to London!
Rhys ran away from school and tried to leave the Emergency Department to be able to have a date with a girl but never made it to the pizza restaurant as he had a seizure on the way. I was there thinking, “Would he have had that seizure if he had stayed in school? Was it brought on by the prospect of having neurosurgery the next day? If not, what had brought it on - the excitement of the date, the stress of having to run away or the guilt he may have been feeling of breaking those safeguards?” He had no id on him when he got to the hospital. Off I went again, “Where was his medi-id band? Had he forgotten it or purposely left it off? Was this so he didn’t have to explain his situation to the girl, or as an act of defiance against his school, his mum or epilepsy and the impact it had on his life?”
To be sitting so close to Owen with the most uncomfortable bits of epilepsy being played out on the TV was tough. When Rhys’s mother came in with his most recent medical notes Owen said “That’s what you two are like!” I felt a pang of guilt and uneasiness but wanted to tell Owen that he was so wrong – I would have been far more manic and neurotic than she was!
I thought Casualty portrayed this story well and was pleased that the BBC didn’t shy away from that other thing that everyone living with this condition constantly has at the back of their minds. “Any one of his seizures could kill him,” said Rhys’s mum to the doctors who were trying to get her to at least listen to her son’s reasons for not wanting to undergo the surgery. What sort of parent wouldn’t want to find something that might reduce the risk of their child dying? Some viewers would just have seen this as a good storyline but I am sure that any other epilepsy parent watching this would have seen a bit of themselves and their own experiences in this episode.
Whilst we didn’t find out what happened long term, we saw that by everybody stepping out of their own little epilepsy bubble and listening to and respecting each other’s views and feelings, Rhys came to a decision by himself that seemed to be a mutual one on all parts.
Living with epilepsy is not about it controlling you; it is about you controlling it. It is not about allowing it to stop you doing things; it is about finding alternative ways to do those things. Rhys may not have made it to the pizza restaurant, but the medical team managed to get Becca to come and have their pizza date in the ED. Regardless of what the outcomes of the surgery were, if she was willing to meet under those circumstances, she must have been understanding of Rhys’s situation and hopefully that was just the beginning of their relationship.