Ninjabetic – Transitional care jealousy
Transitional care, eh. What’s that all about?
I’ve been presenting about it, reading about it and listening to discussions about it for the last few weeks and I have to admit, I’m feeling slightly envious of transition services.
There. I said it. I’m silly, but I’m jealous of a service.
Don’t get me wrong, I get fantastic care from my diabetes team, but I can’t help but feel that I missed out on something all those years ago.
I find it rather odd to crave something that I’ve never had and something that I will never be lucky enough to experience, however my mind keeps wandering back to this, trying to make sense of the past and why I made so many mistakes.
Could transitional care have helped to keep me on track with my diabetes?
I can only speculate. Was it worth giving it a try (after all, I was 16 when I was diagnosed)?
Absolutely. It’s always worth a try.
Transitional care refers to the coordination and continuity of health care during a movement from one healthcare setting to either another or to home, called care transition, between health care practitioners and settings as their condition and care needs change during the course of a chronic or acute illness.
That is a rather dry and yawn-inducing description of transitional care, but in essence that’s what it is.
However, from what I’ve heard from patients, families and professionals, many (note that not all transition services aren’t all ‘up there’) services are fun, focused, patient friendly, forward thinking, supportive (and well supported), engaging, individual, gradual and prepared.
They are not just a service. They are an experience.
If you’re a healthcare professional reading this, and your transitional service isn’t ticking all of these boxes and more, why not? How can you create an experience for your patients?
Locally, in Portsmouth, we have what sounds like an amazing transition service – I tend to read documents about it, in my ‘green with envy’ state, while telling any local young person (with type 1, of course) about how friggin’ good it sounds.
“Have you started yet?”, “Have you met the team?”, “You’re going to love it!” I say to as many young people as I can, while secretly wishing I could join them.
“Things have changed since my day you know,” is my favourite one, sounding a little like an old lady who is recapping her memories from years ago.
You can’t stop the waves, but you can learn to surf
Sometimes I have to stop and remind myself that I’m not even 30 yet (though it’s closing in on me), but in diabetes years living with it for almost 14 years feels like a lifetime.
Anyway, our new, shiny and impressive transition service was transformed a few years ago based on feedback given by patients and families and, from what I know of it, the patients who transition in Portsmouth are very lucky indeed.
But it does enable me to see what I missed out on, what could have been and what else there is to do nationally for transitional care. After all, you can’t stop the waves, but you can learn to surf.
So, here are some thoughts (now that I’m able to reflect) about what I needed (yes, needed, not wanted) as a teen with type 1 diabetes.
As I mentioned above, there are some transition services that may need a little extra help in keeping up to speed with the good stuff that’s already out there, so to those teams, please keep reading.
I recently heard a transition service being described as a ‘continuity clinic’ and I instantly fell in love what that. Being able to see the same healthcare professional(s) is important, it allows for trusting relationships to develop during that time when there’s much uncertainty about the new chapter ahead. Trust is sometimes difficult to come by.
It needs to be earned and maintained and it can easily be broken with unwanted results. Continuity also makes clinic life much easier.
It’s far more beneficial to see someone who knows you as a person, knows your likes and dislikes, knows your history, knows the way that your body works.
I can’t stress enough how refreshing it is to see a HCP who can sit down with me and not need to spend half an appointment getting to know me, only to never see that person again. Let’s all strive towards creating continuity clinics!
I know this will cover a whole host of topics but in particular having a clinic that is flexible and adaptable to the needs of the patient.
When I was a teen I was told when and where I would be seen, and who would see me. This left me with only one option – to save up my questions (which would undoubtedly build up and change from week to week) for a six monthly appointment which I had to attend, or risk being referred back to my GP.
To me this also meant that I was being told I had to take a day off college or a day off work, that I had to use my annual leave to attend an appointment and that I had to spend hours on a bus travelling to and from clinic.
Can you guess what I did?
I can’t tell you how many times I was referred back to my GP. I understand that patients also need to be flexible and adaptable to fit in with the needs of the clinics, but are there other ways of working?
Yes, there are! Skype, email, phonecalls, drop-in sessions, websites, forums, peer support groups, charities, care-lines, patient buddy systems… can any of these options provide that flexibility for those patients who don’t necessarily need to be seen face to face or even be seen by a HCP? Can that free up some of our health care professional’s time?
This is so very important.
The waiting room environment can make or break an appointment. It can even be the deciding factor in whether or not a young patient will return to that clinic.
Can you imagine how it feels to be a young teen who may have been newly diagnosed or may be struggling with any aspect of life with diabetes, who then has to sit in a waiting room surrounded by people who are much older with visible complications?
I can tell you from personal experience, it’s a scary situation to be in.
“Is this what life has in store for me?” I would think to myself as I held back the tears.
Yes, I was in a mixed clinic at the time and no it was not appropriate. Now, when I pop in to grab pump supplies or download my meter, I occasionally walk in on a young and vibrant group of people and I know that I’ve walked straight into the transition clinic.
And oh how I wish I could stay right there. If you want to start small in transforming a transition service, please look at your waiting room set up. The impact it has can be huge. It needs to be welcoming, friendly and safe for patients and families.
And finally (though there is much more to say. I just don’t have space for everything), peer feedback is a biggie!
I’m not sure how many (if any) clinics use the adult patients as a part of their transition service, but this is something I think could be very beneficial.
Perhaps this is one of my ‘in an ideal world’ ideas but I would love to see adult patients, like myself, providing transition patients with reviews, advice, tips, stories, welcome packs etc to provide information about what transition is really like.
I say this often, but I won’t invest my time and effort in much these days unless I know it will be worthwhile. How do I know it will be worthwhile?
I speak to the people who have been there and done that. As much as I value my HCP opinion, there’s nothing quite like hearing first-hand about what something is like from someone who has experienced it.
I would love to see peer reviews on the whole transition experience and I think welcome packs written by people with diabetes, for people with diabetes. It could potentially be the way to go. We speak the language of diabetes, let us help you to help others.