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.
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.
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.
Shocked. Especially as at clinic this week (at a different hospital, UHS) the consultant mentioned starting transition for our 14 and 12yo, without going into details. Thanks for the heads up.