Ben has had type 1 diabetes since he was 8. We wanted to find out how the services changed as he grew up and took more control over his treatments.
What has been good about the services you used?
Every 3 months I had an appointment with the paediatric team (the consultant, diabetes nurse and the dietitian). They had a good balance between encouraging me to look after my diabetes and always being there to support me. I always felt that they knew who I was. They always involved me in any discussion but didn’t try to impose things on me. For example, we might discuss how best to manage my diabetes on a school trip when my parents would not be around to help.
I was given plenty of notice about the move from the paediatrics to the adult diabetes service. They waited until after my GCSEs were over, so I could focus my time and energy on my exams before I had to adapt to the new clinic. The Adolescent Diabetes Clinic is a good idea. During the transition period I saw both the familiar faces from the paediatrics team and the new ones from the adult team. This gave me gradual steps towards independence. I moved from the paediatric clinic where my parents were present, to appointments where they were consulted afterwards and finally to them not being required at all.
Is there anything in particular that stood out?
The team gave me really helpful support and advice when I moved from injecting insulin to using a pump when I was 13. I was finding that different sports had different insulin requirements, so I was struggling to get my blood sugar levels right. The team supported my case to get a pump. This allowed me to fine tune my insulin dosage depending on the sport and my diet on the day.
Were there any negative aspects?
The adolescent diabetes clinic appointments could feel a bit daunting because there are several different people in the room at the
same time. Although everyone introduced themselves it was sometimes difficult to keep track of who was asking questions.
What do you think could be done to improve those appointments?
Instead of one appointment with all of the team perhaps sometimes there could be a series of one-to-ones. That way the discussions could focus on different aspects of treatment.
What would you say about your overall experience?
Very positive, helpful and supportive.
Who or what else has helped you on your journey?
Sometimes I use a flash glucose monitor to keep a closer eye on my glucose levels. I wore it when I went to Vietnam last summer with my friends to make sure I had extra control over my diabetes in the very hot and humid weather.
What would you say to someone in your position now?
I would say make the most of all the resources available and the help offered by the team. Seize the opportunities offered by new technology. When you’re first diagnosed with type 1 diabetes there is a lot to learn. But be positive about the changes and learn how to manage your diabetes around your life. I’ve never let diabetes stopped me doing anything. I do have to be more organised and plan ahead (especially now for driving – to make sure my blood sugar is in the correct range), but I can still do what everyone else is doing.
What do you wish people without diabetes understood more?
Needles don’t hurt as much as you think!