My daughter’s seizures were identified at 11 weeks old, presenting as infantile spasms. This evolved into West syndrome, which, resistant to frontline meds, resulted in a left-side temporo-occipito-parietal disconnection. We were fortunate enough to gain control of her seizures through neurosurgery at age two.
I volunteered to become a parent support navigator because the support of the peer I spoke to at the Pediatric Epilepsy Surgery Alliance was invaluable to me when I was researching neurosurgery for my daughter. Professionals can educate you on all the technicalities of surgery, but nothing beats the lived experience of a parent who has walked the same path as you when you are facing something as significant as neurosurgery.
I want to provide a UK (European) perspective on the neurosurgery pathway for anyone seeking support. Navigating the NHS and private medical care system in the UK can be challenging – having been through this myself, I feel I have a unique perspective for those based in the UK.