This month I was fortunate enough to be invited to the Diabetes UK Professional Conference to talk about my experiences of transitioning to adult clinic and share a platform with Reza Zaidi and Fulya Mehta - two incredible diabetes consultants who do so much wonderful work to improve the lives of those living with diabetes. It was a privilege to speak along side them and contribute to their session on Transitioning to adult services.
The conference took place from the 5th - 7th of March in Liverpool. It was a fabulous experience and I'd never been to Liverpool before, so I was very excited to see a little bit of Liverpool and I even got a photo with the infamous Beatles statue! I'd been to the Diabetes UK Professional Conference before, back in 2016, when it was in Glasgow and I got the opportunity to attend as a Blogger; so it was a lovely feeling to be back at the conference but being a speaker this time it was a little bit more nerve-wracking!
I'm so glad I was invited to speak at the conference, I feel like it's helped me get my mojo back a little bit. I took a step back from diabetes advocacy for a little while but it's nice to be back into it a little bit. I have no control over the fact that I got Type 1, but what I do have control over is what I do with it, and advocating for better health care and a better life for those of us with Type 1 is my little way of taking back control I think. I also just love making a difference, and if my experiences can help other people then that's perfect.
If you want to read my speech I've inserted it below...it's a little bit long, but I hope you stick it out!
Good Morning all, I’m Ellie, age 21 and I’ve been living with Type 1 Diabetes since the age of 11. Thank you for giving me the opportunity to come up here and share my experiences with you all of an aspect of diabetes care that I have come to feel strongly about.
Whilst I have experienced much first-rate care from hcps, both as an adult and especially as a child and adolescent, I feel that the transition from paediatric to adult care in diabetes is often treated as if
turning 18 brings a sudden and complete change in physical and psychological needs. This strikes me as a gross over-simplification of the reality of becoming an adult.
I’ve reflected upon my journey through transition to adult services and picked up some key points and a couple of pivotal moments that shaped my journey to adult services, with comparison to my experience in children’s services, and all this kind of set the scene for the months that followed.
We had a good start, I had a transition appointment with my old consultant and my adult
clinic consultant. As I approached 18 my consultant spoke to me about transition, my team were incredible, and I was more than disgruntled to leave them. An appointment was set up with my consultant at the time and the new adult consultant, this was a good move, it was sort of a “handover” so to speak. It was a long appointment, I’m probably not the most straight forward of cases so there was lots to talk about, and plenty of opportunity for me to huff and puff and express my discontent at this change, but I liked the new team and decided to be open minded and embrace becoming an adult.
But then it all went a bit pear shaped. After the transition appointment I didn’t get another one for 10
months, I had one but it was cancelled, I was told I’d get a new appointment through but it took me
calling and asking why I didn’t have an appointment to get one scheduled. I felt like I’d fallen through the cracks and for almost a whole year felt as though I didn’t have a team anymore.
When I finally got that long awaited appointment it was with a DSN, and at that appointment,
my first DSN appointment in adult clinic, she told me - “We don’t have the facilities to get to
know you” I always say that moving from children’s clinic to adult clinic is a lot like moving from secondary school to university; you go from a place where everyone knows you, you grew up there, and then suddenly you’re thrown into a whole new world where no one knows you and you’re among thousands of others. Children’s clinics are generally smaller, whereas with adult clinics like mine they’re huge, and often crushed under the weight of their own success, I know my clinic is good, I just can’t seem to access the good parts, at my very first appointment the DSN said to me “We don’t have the facilities to get to know you”. I was not expecting her to say this, and while I know her intentions weren’t bad, I think she just tried to set my expectations, and that’s sad, she knew how it was going to be and how things would change for me.
I was on an insulin pump when I left children’s clinic, I was on a “break” but a
pumper nonetheless. My consultant and team in Children’s services were very tolerant of my approach to managing my diabetes, I liked to do things my own way with their support and they accepted this, it was a good approach! I loved my pump, but sometimes I needed a break and so just before leaving children’s clinic I was on a “pump holiday”, but a pumper, nonetheless. I was back on injections during the transition process but struggling. Between transitioning to adult services and my first appointment with someone in clinic I lost my insulin pump. I didn’t know this until I went to order supplies and realised I couldn’t, I had to email the only email I had for one of the DSN’s at clinic and she told me via e-mail that they decided it probably wasn’t the best idea to stay on the pump because my Hba1c was too high. This I understood, I know the reasoning, I know the rules, but what I didn’t understand is why someone didn’t at least get in touch, I know they couldn’t offer me an appointment as they were too busy to see me, but I had barely been there 6 months, had minimal contact and no appointments set up and I just felt betrayed. They made this decision with out me, but I also recently found out that you must see a consultant within 3 months of transitioning to ensure the funding gets transferred properly, I didn’t see someone for 10 months, so I suppose I would have lost it inevitably.
The years leading up to turning 18 and transitioning to adult services, were emotional and hard, big
things happened in my life, my mum had jsut been diagnosed with cancer for a second time, I left sixth form with no idea what I wanted to do with my life, my great nan died just before I turned 18, and it’s safe to say that at 18, the transition age, I was a bit of a mess. So, to me diabetes came last, it was not my priority and I struggled immensely with controlling my blood sugar, I just had no interest in it, I know this of course wasn’t the right thing to do but mentally I was in a bad place, I also found it difficult to properly manage my diabetes in general. This meant that when I had my transition appointment, my new consultant asked me if I was depressed. Again, I know his intentions weren’t bad, but I immediately noticed the different approach, they didn’t have a psychologist at the time, and I was advised to contact IAPT. But I was so down because my life wasn’t going the way I wanted it to, my blood sugar was constantly through the roof, I needed help controlling my diabetes through all of this, through the hard stuff and through generally becoming an adult with diabetes – someone from IAPT wouldn’t understand.
It’s no secret that access to psychological services in adult clinic is not common, I had been seeing a
psychologist in children’s clinic and I knew that leaving children’s clinic also meant I’d have to say
goodbye to psychological support for the time being. I’m very fortunate in that I did get the chance to see a psychologist in adult services, she was newly hired and I was told the wait would be 6 months, but she had a huge backlog to work through – so I didn’t see a psychologist for a year but she was worth it. She is proof that my clinic are good, the fact that they even have a psychologist is something I know is not common in adult services, so I made the most of it. But saying that, how sad is it that something that should be a staple part of diabetes care, in both peadiatric and adult services, isn’t a thing in most places, so an adult clinic that actually has a psychologist makes it a really great place to be…this frustrates me a huge amount - diabetes is more of an emotional burden than someone without diabetes will ever know, when I wanted to curl up in a ball and forget about everything I couldn’t, because I have a condition that if I take my eye off the ball for even a few hours things can go seriously wrong – and the issues that I was experiencing at 17 years old in
children’s services did not disappear when I stepped foot in adult clinic at 18 years old.
I saw the same consultant and DSN’s for six and a half years, in adult clinic I’ve seen a different
person almost every single time I’ve been to an appointment I have a lot of “history” so to speak. So when I had my very first consultant appointment in adult clinic and it was with a consultant I’d never met, a registrar, who I wasn’t going to see again, I was more than irritated. Seeing the same consultant and DSN’s in children’s services for six and a half years was something I valued so much, they knew me, they knew my way of dealing with things and why things were the way they were and I had a really good relationship with them. I’ve seen a different person almost every single time I’ve been to an appointment in adult clinic, and while each of these individuals have been lovely, my appointments turn into me sitting there having to explain myself all over again, to a stranger. I just wondered how I'm ever going to build a relationship with this new team if I barely see them.
At one point my DSN appointments turned into seeing a dietician all the time, I’d seen a DSN once before this, and while I do not doubt the dietician’s knowledge or deny her integral role as part of a diabetes team, she couldn’t help me – she couldn’t help me, there was only so much she could do.
I’ve seen my adult clinic consultant twice and I’ve been in adult clinic for three years, I think I’ve seen a DSN the same amount of times. While this length of time between appointments is ok for some it’s not ok for me. One size doesn’t fit all. And while I don’t feel the need for 3 monthly appointments anymore, I feel like at least every 6 – 8 months would be better. When I do see my consultant I think he’s great, very intelligent and very helpful and really understands the psychological impact diabetes has, but the lack of resources means I never get to see him, at my last appointment he wanted to see me again in six months, I didn’t manage to get another appointment booked in for a year and a half.
I saw my consultant every three months in children’s services, sometimes less when I was 15/16 and a moody teenager who stopped taking her insulin properly and had a HbA1c of 15%. But when I
was 18 and starting adult clinic I still had a HbA1c of 12.4%, in a worse place in the grand scheme of my life than I ever was in children’s clinic, struggling on injections, wanting to go back on my pump, losing my pump, getting my appointments cancelled time and time again, eventually seeing someone 10 months later, completely disengaged with this new “team” and feeling like a lost cause, I fell through the cracks at such an important time, transition, it’s meant to be smooth!
It was anything but.
Transition: the process or a period of changing from one state or condition to another.
I dreaded transitioning to adult clinic before it even began, before the moment I stepped foot into a
whole new clinic for the first time – I was acutely aware that it would be different, and I knew the
change would be something I’d have to adjust to, and I’d have to get to know new people. But you
expect the transition to be smooth, to go without a hitch, but several bumps in the road meant I was
ready to disengage completely by the time I got to my first appointment and the months after, and not
even bother trying. However, the moments I got to see the good in my team, the intelligent, caring
people limited by a faulty system, kept me involved.
In the bigger picture we are all just a number, we’re a patient who has outstayed their welcome in a
paediatric setting; but before I’m a patient I’m a person and I’m complex and real life isn’t as straight
forward as a referral to adult clinic. It’s not a secret that children’s clinics get more funding than adult
clinic, the idea being that they’re supposed to prep you well for adult life with diabetes, but what they
can’t prep you for is the fact that the needs you have don’t disappear when you turn eighteen, and
transition is a gradual process that needs to be nurtured the right way to ensure you get that young
person engaged. Even through my involvement in the online community, I have heard of similar experiences from many young adults, and I also hear from older friends with diabetes that adult care can be very minimal.
There’s lots of good work happening around improving transition with sessions like these. Let’s try and make experiences like mine uncommon; make it the norm to have a smooth transition and an easy process, we shouldn’t always have to lower our expectations because of the fact that like my DSN told me, they don’t have the facilities to get to know you.
I want to feel as supported as an adult with diabetes as I did a child with diabetes and that starts at
transition.
Thanks for reading!
