Who will comfort me when I transition to adult services?BMJ 2021; 374 doi: https://doi.org/10.1136/bmj.n1792 (Published 02 September 2021) Cite this as: BMJ 2021;374:n1792
- Kirthana Balachandran
When I was 3 months old my parents were told I had the genetic blood disorder β thalassaemia major (“thalassaemia”). Since then, I have been undergoing blood transfusions every four weeks. Living with thalassaemia is difficult both physically and socially. Around a week before my transfusions the fatigue appears, especially during physical activities such as PE lessons in school.
These symptoms have caused me to miss school, which I found very difficult during my final years of study. I found myself struggling during exam periods, where I would be too tired to continue working. This was frustrating and I felt like I was always trying to catch up with my friends. I had to juggle responsibilities such as catching up with schoolwork and discussing with teachers any content I didn’t understand, which my friends didn’t have to do.
Facing transfusions alone
I have lived with thalassaemia for most of my life, so I feel like I have grown up in the hospital. The paediatric ward has become my second home, and transitioning to adult services feels quite daunting. Although I have known for some time that I will have to move to adult services, this hasn’t been discussed with me in much detail. Recently transition was mentioned for the first time by my current and future health teams. I was taken for a walk around the adult ward, which I found very distressing. It was so different from what I was used to, and there were so many things I will have to adjust to.
My mum has been with me in hospital during every long blood transfusion. The process can last up to eight hours and during that time I am unable to do much by myself. My mum supports me by collecting my medications, bringing food, and helps me to the toilet when I am attached to the machine. But most importantly, she comforts me. While the covid pandemic lasts, my parents won’t be able to come with me to the adult ward for my transfusion, and even when restrictions are lifted, they will only be able to come for short periods during my procedure. Thinking about my mum not being there during my transfusions worries me greatly. Especially not having her there to comfort me.
Transition should be a process
After the discussion and tour of the adult ward I left with more questions and worries than I started. With only three more transfusions left at the paediatric ward before transitioning, I feel as if this discussion and walk-through process has happened too late. I wish the transition process had been slowly introduced several months ago so I could have prepared more. Having transition discussed openly but slowly would allow me the opportunity to ask questions, take time to digest the process, and to share any further worries I have.
I wish transition was a process with several discussions, rather than a one-off discussion or appointment. I would like to be able to work with my teams to plan how my concerns could be handled. I wish I could feel more involved in the planning of my care, not just be a passenger on the road.
What you need to know
Transition should be treated as a process, so patients can adjust and navigate the change as smoothly as possible
Involve young people in the planning of their care and ask what is important to them
Give young people time to digest the information you have shared about transition, and give them time to come back to ask questions or share any other concerns
Education in practice
How could you introduce the topic of transition to patients and their families?
What could you do to ensure a patient feels involved in the planning of their care during the transition process?
When should you discuss transition with a patient to allow them time to reflect and return with questions?
Competing interests: none.