Following the recent Change NHS consultation, Young Ambassador Ben shares his personal experience of being on a waiting list. He highlights the significant physical and mental toll it has taken on him and his life as a young person, emphasising the urgent need for change, particularly for young people. *Trigger warning, this blog contains text of a sensitive nature.
I’m Ben, a Young Ambassador on the AYPH Youth Advisory Panel (YAP). I am 17 and live in Northern Ireland.
With Christmas fast approaching, my mind is, yet again, turning to a Christmas present I have been waiting for, for two years. I asked for some metal rods, bones and screws. Before you ask, I’m not wanting to recreate a replica car made from bones, as seen on Top Gear, though I’d love some of the other cars seen on that show.
No, in fact, I want to have spinal fusion surgery.
Here’s my story: a few years ago, just after the world had started to return to normal after COVID, I was diagnosed with Adolescent Idiopathic Scoliosis (AIS). Although its cause is unknown, it normally occurs after the age of ten, when a growth spurt leads to an abnormal curvature of the spine. Instead of growing straight, my spine has a ‘S’ shape. Although the consultant was initially hopeful that the curve wasn’t too bad, unfortunately when measured, it exceeded the threshold for spinal fusion surgery. This is major surgery, where the spine is straightened using medical rods, screws, etc. to correct the curve.
Apparently, because of COVID and restrictions on foreign travel, more severe cases have come to light as early signs of the condition were missed because young people were stuck at home during the summer holidays in fleeces, hoodies or coats! I must admit, it wasn’t something on my teenage bucket list but hopefully, by having the surgery as a young person, this will allow me the best chance to live my life free from restrictions or health complications in the future. That said, the surgery does weigh heavy on my mind – and it has for over two years now. Unfortunately, with the state of the NHS, the waiting list is long. Surgery dates have come and gone. Worries about how the surgery would interfere with my ability to sit my GCSEs were ill-founded. It didn’t happen. Going through the same concerns before my AS exams were also needless. It didn’t happen then either. I am now preparing to sit my A2 exams while still waiting for surgery and I don’t know when it will take place.
My life is on hold, or at least in slow motion compared to that of my peers. I hope to go to university next year, but I feel as if I can only apply to study at home in Northern Ireland rather than to other universities. How could I recover far away from my support network while juggling university alone? What about the post-op appointments – how would I manage these if I am living in elsewhere? I have thought about taking a gap year so that I would be free to apply to a university of my choosing rather than one that fits an unpredictable surgery timescale, but how long will this uncertainty continue?
So Santa, if you happen to be reading this, please make my Christmas wish come true and let me get my surgery as soon as possible.
If you or a young person you work with are interested in becoming a Young Ambassador for AYPH, to work to decrease health inequalities and difficulties for other young people, we will be recruiting in 2025. Register your interest here.
Author: Ben, AYPH Young Ambassador
December 2024