Best first transition clinic ever?

transition

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.
Perfect.

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.

TrialNet – Do I really want to know if I may get Type 1 Diabetes?

Today, Emilia, myself and a friend are taking our first steps into clinical trials called TrialNet to see if it’s likely that we may develop Type 1 Diabetes soon.
I think it’s fair to say that we’re all slightly nervous.

What it TrialNet?

TrialNet is a global research project into how Type 1 Diabetes occurs. There are centres in many countries, with Bristol being the main one in the UK but with others joining in including Bournemouth where we’re going today. I believe Portsmouth which is also local to us will be joining in soon.
I first found out about TrialNet via the #DOC (diabetes online community) but it was only following a talk by Dr Kathleen Gillispie at the JDRF Discovery Day in Bristol in April that I started looking into it properly.

Do I really want to know?

Once I started looking at TrialNet the question arose of whether I really wanted to know the answer it might provide.
Quite simply the answer is ‘yes’, although it’s taken me months of questioning myself to make sure I’m sure about this.
The result could go either way but it’s more likely Emilia and I will get the all clear and that would save a few years of worrying. If it turns out either of us are positive for the antibodies then we can proceed on to Stage 2 of the trial, if we choose. It’s important to note that we can opt out at any time.
Initially I signed up, hoping that Emilia might choose to but not really expecting that to happen. I’m pleased that she’s decided to come too as I’m sure she’s been silently worrying about her chances of getting Type 1.

The ‘Natural History Study’ trial

We’re taking part in the Natural History Study where anyone between 5-45 (yes I am young enough, just) with a parent, sibling or child can take part. It’s also open people aged 5-20 who have a cousin, aunt, niece, nephew or grandchild. Quite how a twenty year old can end up with a grandchild with Type 1 I can’t quite work out but presumably if a grandparent has Type 1 and the parents are too old to take part any grandchild can.
We’re visiting the Bournemouth Diabetes and Endocrine Centre today as it’s only 45 minutes drive away but if you don’t have a local centre then you can send your blood sample via post; contact your nearest TrialNet centre to discuss the options.

Helping each other

I know very little about clinical trials but I’ve always imagined that they’re all about the research and little about the person taking part. With TrialNet this definitely isn’t the case as all three of us will ultimately find out whether we’re likely to develop Type 1 Diabetes soon or not.
More importantly we’re helping the trial and I feel this is vitally important to help the scientists learn more and ultimately find a cure or preventative medicine.

Want to find out more about TrialNet

If you want to find out more about TrialNet visit the UK web site here: http://www.bris.ac.uk/trialnet-uk/index.html.

First HbA1c since pump…anxiously waiting

Anxiously waiting

Amy got her insulin pump on the 20th June and the very next day we were back in the hospital for her quarterly clinic appointment, which included the standard glycated haemaglobin check, or HbA1c check to you and me. Tomorrow is her next clinic appointment and the much awaited HbA1c check, which will reflect on her last three months.

HbA1c – a flawed test

There’s a standard joke within the diabetic online community (#DOC) that the HbA1c is a flawed test and that its result is pretty meaningless.
It’s possible to achieve a good HbA1c result when your blood sugars have been constantly low which in turn drastically affects your quality of life. Amy reports that hypos can take a long time to recover from and can ruin a many of the hours that follow. It’s pretty much the same thing for high blood glucose readings.
So it’s much better for quality of life to have blood glucose levels that don’t wildly fluctuate.
The HbA1c check doesn’t take account for fluctuations of BGs it merely tells you your average meaning that the same result can be achieved by two people, one who’s had many hypos and hypers and another whose levels haven’t fluctuated much and stayed within the desired range of 4-8mmol.
All this is best summed up by Dave Sowerby’s excellent article – HbA1c – A Good Measure?.
So, within the #DOC if anyone gets a ‘bad’ HbA1c many of us say ‘well, don’t worry, it’s a flawed test’.

HbA1c – who cares about flaws?
The other standard joke within the #DOC is that if anyone gets a ‘good’ result then we’re all so pleased for them, praising them on their good efforts.
If their result is 6.0 to 7.0 many say ‘wow, that’s brilliant, wish we could get close to that’ and ‘tell me how you do it’.
A result any lower than 6.0 often results in jokes being made…’you don’t really have diabetes do you!?’.
Rarely does anyone mention or ask about BG fluctuation, we’re just happy for those who have done well.

Previous results

When Amy was first diagnosed her HbA1c’s hovered around the 7.3-7.5 mark but recently they’ve been a lot higher.
We can explain this away as her having generally higher levels due to fears of hypos in the night, probably after reading articles in the media about people not waking up due to ‘dead in bed syndrome‘.
On 21st June 2013, at Amy’s last clinic her HbA1c was 8.2.
In March 2013 it was 8.0.
In December 2012 it was 8.3.

Why the anxiety?

We ultimately want Amy’s blood levels to be within range (4-8mmol) all the time with very little fluctuation, all because we went to minimise the chances of her getting complications later in life. So regardless of flawed test or not most people would prefer to see a lower HbA1c.
For me, I want to know that the insulin pump has made a difference. It’s already helping to minimise fluctuating BG levels and it’s helped loads with Amy’s quality of life and outlook on diabetes so (in theory) even if the HbA1c comes out the same or even slightly higher than before then we shouldn’t be worried.
I’d like a lower result too for the hospital’s sake, to know yet again that the pump has made a difference.

What do I think is going to happen?

I don’t know, really, I don’t.
It might go down: in the first 3 weeks we were sorting out Amy’s basal profile on the pump and she was having a lot of hypos, but that’s been mainly solved now and hypos are a lot fewer and far between.
It might go up: Amy’s pump has meant that she’s been snacking a lot, something she never did when injection as she would never take another injection, instead she’d avoid the snack. Amy knows that her snacking needs to reduce but at the moment it’s a rebound thing.
It might go down: Before the pump we never let Amy go to bed with a BG level any lower than the top of the range, meaning that she often went to bed at 10mmol. On the pump a 10mmol would be corrected at bed time, such is our confidence in the pump. In theory this means she runs a lot lower through the night, for many hours.
It might go up: she’s been on school holidays for the last 6 weeks and has been getting up quite late, often waking at 10mmol – which funnily seems really high nowadays.

So…I just can’t guess what the result will be.

…watching this space…