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.

QiC Diabetes Awards 2016: being a Judge

QiC Diabetes logo“No thanks, it’s not really my sort of thing” I said on the phone a few times to Emma, “but if no-one steps forward I’ll do it”.
Emma was organising the Judges for 2016’s Quality in Care (QiC) Diabetes Awards and was seeking to get a non health care professional (HCP) person on each of the three award judging teams.
No-one else stepped forward.
“Damn it” I thought, never wanting to backtrack on a promise.

QiC Diabetes Awards: a bit of background

The QiC Diabetes Awards is a programme designed to award some of the very best projects, initiatives, people and groups within the UK Diabetes arena. 2016 sees it celebrate its sixth year.
This year they were 11 categories, 8 of which were for projects and 3 were for people. See the list here.
Many of the winners and finalists from previous years are featured on the QiC Case Studies page for others to view and learn from, maybe taking on the initiative/project or adapting it to suit their organisation.

What the judges do

This year the judges were responsible for just 7 of the project categories and these are split across three judging teams.
Bob Swindell, Andy Broomhead and I were the non-HCP people and we each took our place on the teams which were chaired by Simon O’Neill (Diabetes UK), Dr Paru King (Derby Hospitals) and Dr Sheridan Waldron (Children and Young People’s National Diabetes Network) respectively.
Each team had to decide on the winners, finalists and commendations for each category.
My team had two categories to review – of course I’m not going to let on which ones.
After all the applications are finalised they are sent by email to each judge who then reads (and re-reads in my case) each application scoring each section against a defined set of criteria. We received them on 14th June 2016.
You have about a month to do this before the results grids are sent back to the organiser, who collates everything ahead of Judging Day. We had to send ours back by 11th July 2016.
After Judging Day you sit back, relax, and look forward to attending the QiC Diabetes Awards evening which you automatically get an invite to.

Paperwork, paperwork

I was sent an email with all the applications for my team’s two categories, 25 applications.
“Well, this won’t take long” I thought, incorrectly.
25 applications, most of which had 10 sides of A4. I don’t think I was prepared for the amount of paperwork I had to read through, and as someone who doesn’t really read it was all a bit of a shock to the system.

It’s 2016, why did I agree to be a judge this year?

If I’d really thought this through I never would have agreed to be a judge this year, another year maybe, but not this year.
June 2016 saw a month long feast of football in the EUFA Euro 2016 finals.
Early July saw the Tour de France start.
It turns out for me these were both far more compelling than judging applications for an awards programme.

Don’t judge my judging process

I guess everyone’s judging process is different, I’ve never done it before but my process worked for me and I’d improve it if I were ever to judge anything again.
On average I took at least one hour per application and judging it on its merits against the framework proved not much of a problem, but after doing that I needed to make sure it was fairly judged against the others. On the two days where I locked myself away for 6 or 7 hours this was much easier, but with football and cycling to watch this wasn’t so easy.
I made notes about every mark I gave for every section for every application as I was worried about being questionned on Judging Day. Turns out I needn’t have worried so much but making notes helped me through the process.
Finally I’d done them all and emailed Emma my completed results grid, merely seconds before the deadline time. Which was pretty much like my whole life at school.

Judging Day beckons

I was very nervously excited to go to Judging Day, at Chandos House in central London.
As a non-HCP and clearly the least educated person in the room I felt nervous about stating my views, holding my ground, challenging others and being a valuable member of the team.
But this would be the first time I’d ever met Becky or Anne in person, after years of chatting on Social Media, and I was really excited about that. Plus I was looking forward to saying hi to a few people I’d met before: Simon, Andy, Kate, Phil, Mayank and Bob.
The judging day itself was good, fairly low key with great open discussions.
The wine, cider and meal out afterwards with Anne and Bob was even better, even if I did later that evening fall victim to Bob’s mission of upping his step count for his One Million Steps Challenge for Diabetes UK.

Making a difference

My worries about making a difference as a non-HCP were unfounded. My views were encouraged, listened to and respected and I left feeling I’d made a real difference, raising awareness about some things, highlighting inconsistencies the HCPs hadn’t noticed.
I was initially worried about being seen as a representive of others in the community – I’ve seen some pretty negative comments to this effect about others – but I soon realised that I’d been invited myself, not as a ‘patient rep’. Otherwise I’d have refused to join in.

Would I do it again?

Yes, I would, without a doubt.
Along with the caveat of not doing it in a year which features a major football tournament.

DISCLOSURE
No-one had any input into the writing of this article other than me.
I received compensation for my time spent being a QiC Judge, for the hours spent doing the reading, taking the day off for the Judging Day, and travel was also paid for. On the plus side I’ll be using this exclusively for Amy and her diabetes stuff.
I also got a free lunch and Lord knows I love a free lunch, it was a damn fine meal and the company I had was pretty good too.
I also got a no-expenses-paid invite to the QiC awards on 13th October where there’ll be cake and I intend to up my ‘wages’ by consuming vast quantities of it.

Worst first ‘transition’ clinic ever?

transition

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.
TWELVE.
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.
But…
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.

Freestyle Libre – hypos, hypers, hype and hope


Hype

With Abbott’s Freestyle Libre launch at the EASD conference on Monday the excitement in the diabetes online community is hotting up, with some getting their hands on the device already.
(If you’ve not heard of Libre before perhaps read this: Abbott Freestyle Libre Flash Glucose Monitoring: no more fingerpricks?.)
The full facts about the product are not yet out but there’s quite a lot of rumours going around and the following seems to pop up all over the place:
– Cost, the initial starter kit will be £135 and will include two sensors which cost £48 each thereafter.
– Sensors, last for two weeks, no more, no less.
– NHS will initially not be funding Libre although there are funded trials going on and may well be special cases for individuals.
– Libre will only be available to 18 year olds and over, the kids licence will hopefully come along soon (I’ve heard that before).

Here’s a video from Abbott about getting started with a Libre, including inserting a new sensor which seems very easy:

Hypos & Hypers

We’ve started using CGM (continuous glucose monitoring) alongside Amy’s Animas Vibe pump to help with hypos and hypers. The CGM alerts whenever Amy goes high or low, Libre won’t do that.
We use CGM to get data to recognise patterns and make adjustments to Amy’s insulin pump’s basal profile. Libre will do that.
We experiment with different combo/wave boluses for different foods and view the results on CGM to see how to do it better the next time. Libre will do that.
In a hypo situation it’s crucial to know whether the most recent treatment of glucose is working and levels are coming up, CGM doesn’t react fast enough so isn’t used for this only blood checks will do. This will be interesting how Libre compares to Dexcom as Dexcom samples every 5 minutes and has about a 5 minute lag, so you could be up to 10 minutes out. Libre though samples every minute but what is it’s lag? If it’s close to Dexcom then it might be up to 6 minutes out, but if it’s closer to older CGMs it could be up to 16 minutes out.

Hope

Without seeing results of trials this product gives me hope for Amy’s future, hope that technology is moving so fast at the moment that even without a cure her life will be more bearable on a day-to-day basis, more hope that this will lead to lower HbA1c’s (without hypos/hypers) and no complications.
Day-to-day it might be able to relieve the soreness of her fingers.
During the night it will mean we can check her levels more easily when she’s asleep. She has a habit of lying on her pump which means I can’t get to it without waking her up.
I hope that this device becomes a mainstream alternative to fingerstick tests and NICE/NHS will fund it on the basis of a lot less test strips being used. I would also be happy to co-fund it like others in my clinic do for the Omnipod insulin pump.

#DBlogWeek 2014 Day 2 – Poetry Tuesday: A Childhood All Gone

dblog week 2014Tuesday’s topic: This year, Diabetes Blog Week and TuDiabetes are teaming up to bring out the poet in you! Write a poem, rhyme, ballad, haiku, or any other form of poetry about diabetes.


So here’s my entry, the first poem I guess I’ve written since my school days. Hope it’s okay.

A childhood all gone: a true story of Amy’s diagnosis and where we are now

 
Well she seemed very nervous perched there on the desk,
Softly saying some words which caused us distress.
A quivering voice made me see from the start,
These familiar words still broke the nurse’s heart.

My salt covered cheeks saw confusion elsewhere,
On the face of a girl who awoke free of care.
Nurses make you better knew the 10 year old girl,
But not what the next few minutes would unfurl.

“Will I die” asked the girl, of the nurse, sat in front,
Whilst the family’s throats all swallowed a lump.
“You’ll need to take insulin to make you feel right.”
“Just the once? No? What? For the rest of my life?!”

With the first meal arriving when six struck the clock,
“Who would you like to give the first shot?”.
The needle-phobic young girl said without any strife,
“I might as well start if I’ve got this for life”.

With injection two done she tried to sleep tight,
On pillows with tear stains she awoke feeling bright.
The nurses so calming got us through the day,
But with arms full of D kit we wanted away.

We couldn’t go yet though as we hadn’t been told,
How to give Glucagon if she’s ever out cold.
The training was nearby but well out of sight,
But that curtain wasn’t as soundproof as the girl would have liked!

The next few weeks all seemed quite fraught,
Trying to remember everything we’d been taught,
Of injections and testing at least four times a day,
How we wish we could take our girl’s pain away.

It all seemed too much, just how did we cope?
With support from our nurses and minds full of hope.
But we felt quite alone, no-one quite knew,
Just how much we had to prepare, carry and do.

We were eighteen months in before I discovered my rock,
In the PWD* who are known as the #DOC*.
They teach me so much and in so many ways,
And continually help to brighten my days.

Three years now have past and how times have changed,
We’re stronger and confidence runs through our veins.
The little young girl with her childhood all gone*,
Would turn out to be so incredibly strong.

Amy and Kev

 
* PWD is people with diabetes
* DOC is the Diabetes Online Community, found 24 hours a day especially on Twitter
* So her childhood’s not all gone as such but she’s been launched into a world of responsibility and worry way ahead of her years.

dblog week 2014

#DBlogWeek 2014 Day 1 – Change the world

dblog week 2014Monday’s topic:Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up.


One of the (many) things that gets me fired up is the headline ‘diabetes is going to bankrupt the NHS’ that you see splattered in news stories occasionally. Articles appear in many online media article, like The Guardian, Sky, The Express and The Daily Mail. At least the NHS filled us in on the stats.

As well as the stories we hear that the people with the purse strings want to privatise elements of the NHS to farm off their ‘problem’. Yet at the same time some of the advice or practises seem to either waste money of give advice which is contrary to current thinking.

 
Without the NHS I see that our family could be missing one rather special thing, Amy.

My ‘change the world’ blog is more about changing the minds of those in Government and my words to them are simple:
Back off.
Change your plans.
Do you realise what an asset you have, the envy of a world which looks at the NHS for the care that it gives, not the money that it costs?

Rather than stop there I’ve got some ideas on how you can change things, although nothing below is diabetes related. As a caveat I have absolutely no medical training, so the following might just be stupid pipe-dreams born from reading and misunderstanding things far more complicated than I realise.

  • Change your focus on Cholesterol and get rid of the Eat-Ill plate – ok it’s the Eat-Well plate really – and prescribe some decent modern up-to-date advice, to adults, to parents but most of all to kids. You’ve got fantastic support from the likes of Zoe Harcombe (@zoeharcombe), so use it and rid Britain of this metabolic disease. Less obese people means less money you’ll have to spend on medication.
  • Only prescribe Statins to those that actually need them. The NHS already knows it’s over prescribing statins. You’ve got fantastic support from the likes of Dr Asseem Malhotra (@DrAseemMalhotra), so use it and save some of your budget.
  • Make sure that nothing can be prescribed on the basis of a single ‘high cholesterol’ figure which isn’t broken down. I’m happy to have high cholesterol if it’s all HDL or the ‘good’ LDL. This one will of course help the one above.
  • Come to think of it if the EatWell (*ahem*) Plate was changed and favoured less carbohydrate wouldn’t that reduce your bills for Metformin and Insulin? Remind me how much that costs you again.
  • Surely millions could be saved by giving easy and cheap access to sport and leisure. There’s thousands of homes soon to be built near where I live and work but I don’t see cycle lanes high on the agenda but they could be and it could all be paid for by the developers, not you, just make them do it. There will be lots of parking no doubt for fuel guzzling cars. Tell me, in the long term will you ‘gain’ more money from cars or making people healthier?
  • You know that all types of Diabetes are growing, so how come you are investing less than many countries? JDRF’s CountMeIn campaign has hopefully shown the Government how low our research grant is compared to other countries. You have numerous MPs in the likes of George Howarth, Caroline Noakes and Jamie Reed who could tell you lots more. So, up the research grant, help find a cure and/or prevention and help eradicate diabetes full-stop.
  •  

    dblog week 2014

Type 1 diabetes and young people – Rt Hon George Howarth, MP

Parliament_at_Sunset

I’ve just finished listening to (a lot of) Rt Hon George Howarth MP’s parliamentary session entitled Type 1 Diabetes and Young People. It was a breath of fresh air to listen in the public eye who ‘got it’, who explained everything correctly, who wanted more support for people with Type 1 Diabetes.

Here’s a link to a stream of the debate: Type 1 Diabetes and Young People.

Mr Howarth’s own knowledge of Type 1 Diabetes is for me a sad and alarming story. As a parent of teenager with Type 1 Diabetes I worry enormously about stories like that of his daughter. Clearly if I ever meet Mr Howarth we’ll get along quite well.

So it was a first for me, listening to some ‘boring’ (perceived, not actually what I felt whilst listening) speech and actually understanding it, agreeing with it and at the end wanting to applaud Mr Howarth for holding this session. It was great to hear him praise Zoe Scott’s Hedgie Pricks Diabetes and Diabetes with Eating Disorders amongst other organisations and charities. Diabetes UK’s and JDRF’s programmes and initiatives were covered well.

What amazed me the most was the knowledge of, and some of the issues raised by, other MPs who (I guess) have little exposure or knowledge of Type 1 Diabetes. One MP raised that education needs to be given to those with Type 1 to help them avoid diabetoketoacidosis (DKA) due to Diabulimia. Another MP raised the issue about schools not supporting children with Type 1 and those that cannot inject their own insulin.

Between them they covered many things, such as the benefit for some in using insulin pumps; the Artificial Pancreas project funded by JDRF; about transition from paediatrics to adult care based on clinicial need rather than age; support and training for psychological issues; about the DWP and issues with awards of Disability Living Allowance.

This was all great to hear, that those with influence know a lot of what they are talking about and are behind many initiatives to bring Type 1 Diabetes more support than it currently gets.

Personally I’d like to thank everyone involved for taking part and especially Rt Hon George Howarth for this debate.

All aboard the diabetes coach

On the 29th December 2010 Amy boarded the type 1 diabetes coach – destination unknown – and we all joined her. Luckily we can get off for a breather whenever we please, unfortunately, she can’t.

We were lucky that Amy didn’t go for too long before being diagnosed; she was only 22 mmol/l when admitted to hospital and whilst she’d lost a fair bit of weight she wasn’t very dehydrated and didn’t need to be placed on a drip. Afterwards, we estimated that she’d lost one stone (14lbs, 6.4kg) and how we didn’t spot her weight loss is a mystery to us all.

Come the next day – New Year’s Eve-Eve – life seemed completely different. Emilia and I went to the hospital to find two tired people who’d got some sleep inbetween the tears. Amy look bright, so much better than the day before and spent time talking with her sister whilst Jane and I spoke with the DSN about everything we needed to know for the next couple of weeks.

Amy had been given a pad and a pen to write down any questions she had. I took one look and was amazed the things that mattered to her to most. First on the list was ‘does this mean I can’t go to India anymore?, followed by quite a few more – see First questions from a newly diagnosed diabetic.

Whilst Amy and Emilia played some games on the hospital bed Jane and I were taken aside for the (almost freaked us out) ‘what to do if your kid doesn’t wake up training session‘.

Later we met with the dietician and had further chats with the nurses and doctor.

The quality of care from the moment we arrived at Sophie’s Place had been impeccable.