I moved up into adult care when I was 18 because I was seeing a psychologist.
My psychologist and I both decided I shouldn’t move clinics until I started university, but I didn’t get much notice when I eventually moved. I went to my paediatric appointment and the consultant told me my next appointment would be in the adult clinic, which felt a bit quick.
Moving up to young adults clinic and going to uni at the same time probably wasn’t the best thing for me personally. I think this was because it was a lot of change all at once.
I'd known my paediatric team for a long time and was comfortable with them, so moving was hard. I felt like all these relationships I’d made were just going to disappear.
When I moved I kept my care in my home town, this meant that I didn’t have support at uni when I first moved away. I kept my care in my hometown because it was in a hospital I knew, but I think I would have found the support in my new area useful.
First appointment in young adult services
At my first adult appointment, I took my mum with me for support. I think the biggest shock for me was the waiting room and seeing people with amputations, which was actually pretty scary.
I knew about complications in paediatrics because we were told that this was why it was important to look after yourself, but I’d never met or seen someone with them before.
I really didn't like sitting in the waiting room because I felt like I was staring at my future. I thought that maybe it didn’t matter how hard I tried because I’d still end up having complications anyway.
This definitely made me disengage more with my diabetes because the people there were so nice that I thought that this might be just what happens. I really wasn’t prepared for what it might be like in the young adult's clinic and I didn't really like being there.
The main change I found was that the number of appointments I had changed quite a lot, I went from having four appointments a year to just one.
Having less meant I didn't build up the same type of relationship with my doctors and nurses. I didn’t really feel comfortable asking questions about my diabetes at the start. I thought my healthcare team would judge me because they’d think I’m older now and that I should be able to look after myself.
The appointments also become a lot shorter and more focused on my numbers and targets. Before I felt like appointments could last as long as I wanted, so I definitely noticed that there seemed to be a time limit.
But not all the changes are bad, I found it harder to talk about things like sex and drinking when I was in paediatrics. But now I feel more confident talking to my healthcare team about more adult topics. I’d known my paediatric team since I was 10 so it could sometimes be a bit embarrassing talking to them about certain topics.
You also get given more independence too. I found the adult clinic is less likely to tell me I can't do something. So if there’s something you want to do like a certain sport or travelling, they'll help you figure out how to do it.
Finding a community of people with Type 1 diabetes
When I was 23 I become more involved with the Type 1 diabetes community and I think this really helped me engage more with my own diabetes.
The change was really alarming because I hadn’t realised I’d been so disengaged with my diabetes until I met other people with Type 1.
“I feel a lot better and more in control even though it’s taking more of my time and effort, it’s worth it. I feel like I’m running the show now, not my diabetes.”
When I was younger I didn’t want to speak to other people with Type 1 because I didn’t want it to define me. But now I think having the support of other people when I was moving clinics would have been really useful.
As much as family, friends and your healthcare teams are compassionate they probably don’t understand exactly what it's like. I think having people around you with Type 1 feels like a weight has been lifted off your shoulders because you have people that completely understand.
My advice to anyone moving into adult care
Know your rights
I took my mum to my first adult appointment, but I didn’t realise she could come in with me so she just waited for me in the waiting room. I think I would have found her being with me really supportive. Knowing your rights is really important because it means you know if you're getting the best support and what you need.
Be vocal if you're not getting what you need
This is actually pretty hard, but if something's wrong don’t feel scared to tell your team and ask for what you need. When I was moving, I just saw my consultant in most of my appointments because the diabetes nurse and dietitian weren’t around. I think this really affected my move because it made me feel like I didn’t have the support of a full team.
Plan your appointments
Since having one a year, I’ve found it really useful to write down everything I want to ask or talk about in my appointments. I hate leaving and wishing I’d spoken about something but forgot. You can write it down, put it into your phone or tell to the person you bring with you to remind you.
Don't be worried about asking for help
I think because my appointments are so target driven, I sometimes feel anxious if I’m not hitting my targets. But no one is perfect so you’re having hypos in the night or you’re going low more often, speak to your doctors. They’re there to help you figure out what’s going on and to help you improve, so make sure you use them.
Find other people with Type 1 diabetes
If I could go back I’d definitely find a community of people with Type 1 diabetes. It doesn’t matter if this is online or in your local area, but I think this would have made me more confident because I’d have known about other people’s experiences. I also would have liked to be able to tell someone I was going to the clinic who understood and just to have someone say “I get it” would have been nice.