Welcome to my blog. I write about my experiences in living with disability, as well as my aspect on life and my travels.

Transitioning From Children's Hospital Care to Adult Hospital Care

Transitioning From Children's Hospital Care to Adult Hospital Care

A transcript of my talk at the Royal Children's Hospital Psychology Seminar on the 17th of August 2018.

My journey at the Royal Children’s Hospital began at 6 weeks of age when my parents visited the emergency room to get confirmation on their concerns. At the beginning and throughout my journey at the RCH, I had a large team of specialists. Firstly, I was looked after by the orthopaedic and neurology surgeons which later included the respiratory, dietary, urology, occupational and physical therapy team.

At the beginning of my time at the RCH I was having frequent doctor appointments and till the age of 4 I was in and out of hospital. From the age of four till 10 my visits slowed down to just being every 6 months. Although at the age of 10, when I needed major spinal surgery, I was back to visiting the hospital regularly. After my recovery and rehabilitation, my health stabilised and even to this day I’m the healthiest that I have ever been.

During my change from the children to adult services, transition meant that it was a new step into my care as I would be receiving different treatment. It also meant that it was a new step in my life. As I would be needing to look after my own hospital appointments and care. One of my main concerns when transferring was my ability to look after my own appointments and organise my own care because I wouldn’t be having my parents doing it for me. However, despite my worries I was excited to beginning this new chapter because I was becoming more independent in looking after my health and going into the next step of adulthood.

The doctors discussing my transition from an early age really assisted in me becoming normalised to the aspect of transitioning into adult services. As soon as I became a teenager numerous doctors were discussing transitioning. They discussed my own voice in my medical care and started discuss what hospital/doctors would care for me. I key highlight from my transition was meeting up with all the care doctors from the Austin respiratory team. Meeting with my new doctors in a space that was familiar with my then doctor helped me to feel at ease. 

For my Mum who had been my main carer with my medical needs, having a long time to prepare for the transition and the informal chats with a transition coordinator helped my Mum come to terms with the change as well as begin to take a back seat in my care. My mum’s role in my life has changed very much for the better. It isn’t as much of a mum being a carer now our relationship more of an adult mother/daughter relationship.

These days Mum doesn’t help with much. I’m fairly independent in all of my life, including at the hospital. If I’m unsure about something with my health I’ll ask her but usually she just says the same thing that I’m thinking.

I’ve kept fairly positive about all of the changes in my life that has occurred over the last 12 months. I’ve tried to take it each as it comes. I have certainly struggled with the stress of organising my life. I’ve stressed with organising my health, studying with university and organising living on my own. 

For any patient that is going through their journey of transition, my top tips would be to include families into the change and ensure that the change is being spoken to a lot. This will allow for the change to feel like a normal exorcism. Also, allow young people to know their options and for them to find their voice in their care. 

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