Thursday, 22 May 2014


The ‘transitional’ period of going from being a child to an adult is normally quite stressful but even more so for disabled young people. Not only are people unsure whether to address me as a kid or a grown up, confusion also reigns over the services I use. For example, since being diagnosed with Friedreich’s Ataxia back in 2001, I have been attending Great Ormond Street Hospital on a yearly basis for a check-up about my overall condition.  G.O.S.H. is a children’s hospital so when I turned 18, I was sent next door (funnily enough) to the UCLH building. That was an easy transition but some have seemingly left me in the cold.

When I was hospitalised due to a heart problem not long after starting University in 2012, the doctors were unsure whom to contact now I was an adult. I had always been at G.O.S.H but was set to see a cardiologist at The Heart Hospital so it wasn’t clear who to go to. It was soon resolved as G.O.S.H. agreed to seeing me one last time (although I was nearly 19) before officially handing me over like a baton. I was happy as the confusion didn’t last long but not all transitions have someone I can be passed to.

I’m now 20 years old (well I have been since December 30th), which is quite a key age in my opinion, as you have to grow up quite a lot. I am no longer a teenager so unfortunately no longer have that to excuse any unsociable or rude behaviour. Entering my twenties is also seemingly a key age for various services to discharge me and leave me on my own. I had a really good social worker but a few months ago, she left and just told me to contact the duty worker if any problems arise. Same with the Occupational Therapist and the Transition Nurse coordinator.

Not having a specific social worker is the norm in adult care but having a named first port of call is vital when disabled, not just for me but also my family. I want someone that I can build up a good relationship with and approach if I have any issues. Not a completely different person everytime. I don’t want to be explaining my circumstances over and over again. The ongoing problems I am having regarding moving out exemplifies this. So many people have suggested that I speak to my social worker but I can’t because I don’t have one anymore.

It’s like the government are saying if you’re disabled and have managed to reach 18, we will gradually phase you out of life so that you feel isolated and abandoned.

Bye for now!

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