Best first transition clinic ever?


On Tuesday Amy had her first transition clinic, it was everything thing it should have been and a vast difference from the first one forced upon her in January 2016.
She was in control of when transition started and who would be there at clinic.

Previously: Worst transition clinic ever?

In January 2016 after just turning 15 Amy’s first attempted transition clinic was an absolute disaster, especially as she had been told in the previous November what would happen and said that she didn’t want to go in by herself.
In reality Amy probably was ready to prepare for transition and the clinic team knew that, so I’m absolutely sure they thought they were doing the right thing, but they didn’t listen to Amy, or forgot, both of which were totally wrong.
Her wishes: I’m not ready to transition yet.
Our view of what clinic thought: We’ll do what we want, when we want, we’re in control.
After a family discussion Jane emailed the team and from that day on we never heard about transition

A broken relationship with clinic?

We didn’t let our anger from January 2016 last for very long, we emailed them, they responded very well, we moved on.
We knew that our team woke up every day with a desire to do a good job, they are lovely personable people with a knowledge far exceeding the little bits we understand about this condition and if we ever needed support they would be there.
But this one action almost saw us move clinics to another team, it felt that bad, one more wrong move and we’d be gone, to the bright lights of London’s UCLH or staying local with Southampton UHS.

“Are you ready to take the next step?”

When transition was mentioned back in December Amy agreed the time was right, but it brought a huge moment of sadness from both Amy and her consultant who’s been with her since diagnosis, and the ward flooded with tears. But I knew the new consultant a little and knew he’s just as lovely as the first, it made things a little easier.

The appointment

With nerves aplenty Amy and I entered the new centre, all gleeming white, with its touchscreen login screens, it already felt we’d moved from a provincial hospital to a bright-lights-city one.
We moved to the new waiting area and saw a few other other teenagers and young people. There was food available – but no blooming nutrition info! – but was it for us, or not? It was.
I chatted with one of teenagers ‘M’ who was using a Dario meter on her iPhone, I’d not seen one before.
This was already so much more relaxing that we thought, Amy was definitely relaxed and seeing the face of her most recent DSN certainly helped that.

Helping the Young People ask for help: a great idea

‘M’ picked up a piece of laminated A4 which had two dozen words/phrases on it with an area to put a tick or a dot. She explained that all you need to do is put a mark by anything you’d like to discuss.
Amy picked it up and we joked about ticking all the rebel ones: ‘alcohol’, ‘sex’, ‘recreational drugs’, ‘tattoos and piercings’, but in the end opted for ‘driving’, ‘alcohol’ and ‘insulin pumps’.
I could see how brilliant this idea was. How many people, adults let alone young people, would just freeze under embarrassment when required to speak those words? But to tick stuff before you speak to anyone, and then just hand the sheet in, yes, I can see that’s far easier.

Back with the old DSN

They’d explained that the whole team wouldn’t be changing at transition clinic and Amy’s DSN would remain the same, that’s a good thing, she’s lovely.
HbA1c was done, questions asked, Diasend graphs gone over and lots of questions about delaying the switch to a new insulin pump for Amy. Hers is 4 years old in June but it’s not a good time, what with GCSEs from May to end of June, NCS starting afterwards until a couple of days before we go backpacking around India for a month (again 🙂 ).

The new consultant

I’ve spoken with Dr P a few times, he’s great, I like his attitude and his way with people.
I’d dared Amy to greet him in his native German tongue with something like ‘Hi, my Dad doesn’t understand German and he’s an idiot’ but she bottled it.
From the word go Dr P addressed Amy and told her a few things which are very important (I’m paraphrasing here):

  • this is your clinic
  • you have the right to come in with or without your parents, it’s up to you.
  • your parents have the right to come in without you should they wish.
  • we’re here to help you transition to adult care, to become educated enough to move on without fear or worry
  • we’re here to prepare you to be okay about coming to clinic by yourself, just in case you go to university, or just want to come by yourself.

This was all exactly what we wanted to hear.

A long time later

We’d arrived at clinic at 5pm, it was now gone 6:30pm and we’d spent at most ten minutes waiting.
Amy had chatted with ‘M’ who was interested in Amy’s views about insulin pumps, it got Amy waxing lyrical about its benefits to her: ‘it’s changed my life’, ‘I’d never go back to MDI’, etc..
We’d seen the DSN, the Consultant and spent a long time with the new Dietician.
Amy was relaxed, as was I.

We arranged the next appointment and left in silence until Amy broke it with “that was really good”.
Best first transition clinic ever?
Yes, probably.

Worst first ‘transition’ clinic ever?


So then, transition is a process which takes time.

A first chat about transition

Shortly before Amy turned 15 in November we had a home visit from our lovely DSN who talked about transition and said that at the next clinic Amy could, if she wanted to, go in to see the Consultant by herself. Amy said ‘no thanks’ and said we’d go in together.
That clinic was yesterday.

A normal clinic

Normal practice is that Amy gets measured and weighed and we wait until either the DSN or the Consultant is available. Sometimes everyone meets together, all squished into a tiny room.
With the Consultant appointment we will produce reports from Nightscout or Diasend and talk over anything we need to. We chat about care, school, events, issues, new technologies, insulins and so on.
With the DSN (and Dietician) we talk about pump infusion sites and little else. The Dietician doesn’t mention anything since I called her out on some factless stuff she’s said in the past.

Yesterday’s clinic

Arriving in clinic and with measuring and weighing all done we sat alone in the waiting room.
The DSN arrived and called Amy, we presumed to get her HbA1c done, but after a couple of minutes she hadn’t reappeared. Jane and I guessed she was in the loo. After a few more minutes we realised she was in with the Consultant, alone, going against what was said in November.
Ten minutes later Amy reappeared with the Consultant and asked me to guess her A1C. I failed, it had risen 0.9% and it took me by surprise. To be fair as a family we have worked on – and have succeeded – getting her standard deviation lower, removing the hypos. So it’s no surprise it has gone up. What did surprise me was the lack of concern from the Consultant but I thought that we’d get the chance to talk it over.
We didn’t.
She disappeared with a ‘sorry I’ve got someone else in there now’. ‘Really, what about us, what about our appointment?’ I thought, presuming we’d get a chance later.
The DSN arrived and called Amy but this time we stood up and went in too much to the surprise of the DSN.
The standard checks of site scars and tissue were done and we were asked if we had any questions…

‘Can we talk about transition please?’

They seem surprised I would want to talk about how today’s clinic had gone and said that it’s normal.
I suggested that if us parents would not get the chance to talk then Amy might as well be in adult clinic already. The Dietician told me that I was ‘lucky’ (cue dumbstruck face) that they’d left it until 15 as their guidelines say anytime after 12.
Are they seriously trying to say that they think it’s a good idea for 12 year old kids to go it alone? Or was this yet another CrapFact the Dietician dreamed up?

Do they think we’re both here because we don’t work?

Let’s not forget that I had taken a day’s leave from work and Jane was losing her day’s wages to be able to attend clinic as a family.
That’s something we don’t mind doing at all, but there’s no point if we have no involvement.
That’s a cost DLA offsets but it’s also the cost of another self-funded Dexcom sensor. Hmmm, pointless clinic appointment or another CGM sensor. Right now, there would be no contest if we didn’t need them.

Is it time to change Hospital?

The way I feel right now, the way Jane feels right now, and faced with a lack of education (previous and future) and so far the worst transition experience ever?
Yeah, I think it is.
Amy is relatively happy here, but she doesn’t realise the care she’s missing out on, she doesn’t understand what is available elsewhere, she doesn’t understand what a good transition could be.
I don’t feel comfortable switching unless it’s a family decision.

A way forward

It seems the best way forward is to let clinic know our issues and let them have a chance to respond, to see it our way, to change.
Jane and I plan to do this early this week.
If that doesn’t happen I feel it’s time to move on.