I moved up to adult services at the same time I went to university so I was 18. Moving up when I was a bit older didn't really bother me that much.
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I moved into the young adult clinic when I started university, this helped me because it meant nothing came as a massive shock and nothing really happened that suddenly.
I decided to move my care to Leeds because for me starting uni was all about being more independent. I was moving out of home for the first time so moving my care was a big part of that. I also wanted to move into adult services in Leeds because if there was an emergency I had my healthcare team around me.
Before I moved I was put onto a patch pump and the Freestyle Libre and getting used to new technology and adult care at the same time was difficult sometimes.
First appointment in young adult services
When I moved up into the adult clinic, I actually went into the young adult service so I didn’t jump straight up into the adult clinic.
This meant that the care I got was quite similar to the care I’d had in paediatrics, for example when I went to my first appointment in the new hospital I had two doctors, a nurse and a dietitian in there with me.
At the start I didn’t feel like my care had changed massively, it was more just a change of scenery for me.
“I think the young adult service is really useful because it meant I got used to the differences more gradually.”
I definitely felt ready for the move, I was getting positive results from my appointments in paediatrics. I felt like for once I had gotten my care to the point where I would be able to manage on my own without my parents, and so moving into the young adult unit the right move to make.
I also felt prepared because all of the nurses at the hospital kept talking about the fact I’d be moving up soon too, and I’d spoke to my doctors about it.
They had told me about some of the big changes like I wouldn’t see my healthcare team as much, so I had a good idea of what it would be like before I went to my first appointment.
Differences
For me, the main difference was there was much more emphasis on doing stuff and managing your diabetes on your own.
I think another difference I noticed was because of the number of appointments I'd have, my relationships with my team became less personal.
I have appointments once every six months, but eventually, that will go down to one a year. I definitely don’t have the same type of relationship with my team as I did before because I see them less, and also you don’t necessarily have the same people every appointment.
I just generally see my doctor and sometimes my nurse in my appointments now. I have to book a separate appointment if I want to see a dietitian or something like that.
I actually have two different doctors, so I might not see one of them for a while depending on when my appointments are. Although we talk about everything and they’re both really thorough, I feel like we have a much more formal relationship.
“Leaving paediatrics and my PDSN was almost like leaving a member of my family. But moving into adult care did make sense because at uni I had to rely on myself more and more.”
In my young adult service, complications are talked about a lot more. I had been aware of them when I was younger because my uncle, who also has Type 1, has nearly lost his eyesight because he’d not been looking after his diabetes for a while.
This happened when I was about 13 so I’d had diabetes for about two years, and I think it made me realise I needed to manage my diabetes as well as I could.
I think the conversations you have with your doctors are franker as you move into young adult or adult care because you can now really understand what the complications are and why they happen.
Finding a community of people with Type 1 diabetes
Having a good group of friends around me when I moved was really good because I could speak to them if I was having trouble. But I think knowing other people with Type 1 when I was moving clinics would have been really useful.
I think if you have the ability to find a community of other people with Type 1 you should reach out to them. I do now and I don’t know what I’d do without them. I first met someone else with diabetes at a Diabetes UK event and I found out she went to Leeds uni too.
She mentioned she’d seen a leaflet with a Facebook group on it called ‘Insulin Army’ which was for people with Type 1. We both decided to try and find the Facebook group and decide if we could organise to meet up.
I thought reaching out and meeting other people would help me because you can still get lonely, even if you have a really good group of friends.
Having people who know what it’s like to finger prick, to inject, to scan, to carb count all the time and that sometimes you get fed up is really comforting. When we all met up, we all thought that it was a bit ridiculous we didn’t know about each other before so we could get support.
“We thought that we all could have used this in our first year and when we were moving care so we decided to try and make the group an official university society by the end of term.”
I think having this community would have helped me transition because you have people around you who have either probably been through it or are going through it at the same time.
I think sharing your experiences is really important, it might not physically help with your move, but it’s always good to have support and someone you can talk to that totally understands.
My advice to anyone moving into adult care
Don’t be afraid to speak to your healthcare team.
If you’re worried about moving into adult care, or into a young adult service, make sure you speak to your doctors and nurses. They’re there to help you and they can help you work through any trouble, doubts or worries you have.It’s okay to feel lonely sometimes.
If you’re feeling lonely, try and find other people with diabetes. It really helps to have people around you that understand and can share your experiences.Plan your appointments way in advance.
When you move, you’ll have to start organising your own appointments for the first time. Don’t worry, I still have to plan pretty far ahead to make sure nothing clashes with them and that I know what I want to talk about.