OurD Tweetchat & A Valuable Lesson

Me again,

I completely missed Tuesday’s OurD Tweetchat, Emily was having a 2.6 hypo & wanting all my attention, so I was MIA to even hear everybody else’s experiences.

I’d never have been able to answer questions on ‘Diabetes & Pharmacy’ in 140 characters.  Not a hope.  It was going to have its own blog post at some point anyway.  I will go into more detail below (mainly in question 3 where I’m bound to drift a small way off the topic.

Question 1 – Have you ever had a problem getting your prescription, anti-diabetic tablets or insulin?

I don’t think we’ve had no more than anyone else.  We actually have an online ordering service around here so we can place an order one evening & they will be dropped to our door.  We don’t have any direct contact with the local pharmacy any more.  The only issues we have is when having to get non-standard items, such as a quantity of ketones strips, or emergency pen supplies when they have expired.

We have had a couple of occasions recently when we have had to go purchase test strips due to failure to deliver however in their defence we really shouldn’t be allowing test strips to run as low as 48 hours supply remaining before re-ordering.

All in all they do a very professional job & make life easy for us.  They are always on the end of a phone late in the day if prescriptions have not been dropped off to let us know if/when they are going to arrive

Question 2 – If you have a regular repeat prescription, has your pharmacy team ever gone out of their way to help you if you had a problem?

We no longer actually deal face to face with the pharmacy (Boots in our case).  We live in a relatively small town and they are the only pharmacy.  For reasons explained below we rather fell out with our pharmacy.

Question 3 – When you (or your child) were diagnosed, were you given enough information about your medicine and BG testing? Has your pharmacy helped?

Here we go.  The fun bit.  It may go on a bit as this question as I say was going to get its own blog post.  There is no one person to blame, there are failings all the way through but the accumulation could have killed Emily.  So I best start at the beginning.

We are going back a couple of years now.  November 2011 to be precise.  Emily had woken up with a reasonable BG, low double figures, not uncommon.  I went to work.  Amy took over, noticing that the insulin was running low anyway she did a full set change & proceeded with the day, corrected, bolused breakfast and went on with the day.

2 hours later, BG was checked & she was even higher, high teens, this was odd.  No real signs of illness, air bubble maybe.  Again Amy corrected.  Emily snacked and went on with her morning.  Next test & we were in the mid 20s.  What was going on!?!  Ketones, 0.1.  So wasn’t her body was registering that Insulin was in her system.

One thing about Diabetes is it is very hard to deal with from your desk at work at times like this.  So I told her to correct again.  These doses were becoming quite hefty.  I was very concerned we were tempting a crash.

Emily had lunch, she was 3, you can’t stop a 3 year old wanting food.  Again it was bolused.  It got to about 1pm & Amy retested – HI.  Ketones 0.1.  This doesn’t make sense.  Again Amy corrected, Emily had now had a full days insulin in corrections alone.

I was becoming tetchy.  Amy wanted to know what was going on.  And the problem was hard to work out while we were separated.  I called our DSN, we didn’t get along (hence why we have now moved clinic, she always knew best or so she thought).  I had to get Amy to talk to her, I couldn’t answer the questions she needed to know, another hour passed, 90 mins, still HI on the pump, another correction.

Then the first error in a catalogue was uncovered.  Well in honest the first 2.  One was by our clinic at diagnosis.  It was possibly seen as non-important information to a family put directly on a pump but I’m telling you now, EVERY PARENT NEEDS THIS INFORMATION AT DIAGNOSIS!

Our DSN had Amy check the vial of Insulin from this morning, was anything different… It’s a bottle of clear liquid.  What is different, was it filled with Vodka?  There’s different insulin?  No-one has mentioned different types of insulin (This is much before the DOC for me, we had no contact with any other diabetics or knowledge of how MDI worked).

The label on the box was the same as always, however underneath the sticker put on by pharmacy once pealed was a purple box, not a blue one.  This is when the panic set in, and not only for us.  We barely knew what it meant but the DSN certainly did & she sounded for the 1st time in our experience worried.  You know what I mean, they take a breath and start talking very slowly and over calmly.  She wasn’t fooling anyone.  The very clear message was get her into hospital immediately.

So what had been discovered, Emily’s pump is filled with Apidra, and this stuff certainly Apidra, however she uses Apridra Glulisine, this was Apridra Glargine – More commonly known to everyone reading as Lantus & alike.  Emily was at this time on approx. 2 units of basal a day.  We had given her 12 units of the Glargine that day so far.

It had been a mis-pick at the pharmacy, and then incorrectly checked by the 2nd pharmacist.  Another poor practice was that the printed sticker was then wrapped around the box covering most of it (as you know these boxes are rather small and you could easily cover most of it).

Yes I admit we could have questioned the different colour box, but in all honesty we have all seen the packaging that our supplies come in change over the years, so it wasn’t a big surprise to see it in a different shade.

So Amy came & collected me from work en-route to the hospital, to this day this is still the only time I have had to use a pen.  I took Emily to the other room at work and battled to inject her with a correction of her fast acting insulin (on the advice of our DSN).  It isn’t something I would like to do often, I just hoped it had worked.  To be fair the last time I was shown how to inject was over a year before, the week after she was diagnosed during a crash course with our DSN.

Amy bombed it to the hospital.  When we arrived there was an entire team waiting for us.  Emily was a bit perplexed by it all.  She was feeling fine.  Amy went with Emily, I was pulled aside by our DSN, specialist & doctors and asked to relay everything from today.  Then the doctor said ‘so you’ve given her all her daily basal insulin?  2 units’… ‘No, her daily total insulin, 12 units, and I’ve just given 3 units via a pen’.

I have never seen someone who isn’t ill go so grey in front of my eyes.  Not really the reassuring smile I was looking for.

BG was taken, we had a figure again finally.  They had Emily in a bed, working out a plan of action, her pump was removed.  Something she really couldn’t understand.  I think she thought she was cured!  All we were told was that nothing would happen at the moment.  They expected things to really kick off in the small hours of the morning (what an ideal time for a BG crash).  It was only 4pm!  That’s a long time to hang around waiting for something bad to happen.

Over the next few we were given very limited information as to what Emily had been given, looking back now I understand but then it was very different.  All we understood was Emily needed blood readings every hour and that the insulin she’d had would keep dropping her blood for several hours afterwards.  It was all very vague.

I remember her being allowed to eat anything she wanted, and having no bolus to cover it.  The hospital had decided the best way ahead was to get her BG as high as possible.  And that we did, it was off the chart.  We had no idea just how high.  But it was better than being low.

Amy said her goodnights at 8pm, trying to hold herself together, she doesn’t do the overnight stays, that’s my area as previously mentioned.  Emily settled down for the night after watching a DVD and went to sleep.  Was a horrible time alone, curtain drawn, sitting in a dark, cold hospital chair.  The nurses were lovely as always.  I went into my auto-pilot, on the our every hour checking her levels.

Then it started 1am, we got our 1st reading that wasn’t HI, 2am, 3am, 4am, they went just dropping they were plummeting.  The nurses had provided everything required to deal with a hypo if the time came to it.  I just wanted to get to the morning & let Emily have breakfast.  I wanted to seriously avoid treatment to a screaming Emily in a ward full of sick children. For the 1st time she looked really sick from her diabetes.  Even at diagnosis she didn’t look this ill – Bless her

hospital nov 11

I was now on 30 minute BG checks.  By 5:30am she was 4.2, It couldn’t be left any longer.  I woke Emily & hoped for a happy child, and very unlike her she was  co-operative.  She WANTED food.  The nurses fetched toast & jam for her while every other child slept, sitting eating in the dark.

For the next 6 hours we battled with her BG, but not once did she hypo.  Things started to calm, her BG was holding steady rather than dropping.  At lunchtime the next day her pump was re-attached.

I then stubbornly & probably not correctly in some people’s eyes argued with the DSN that I never got on with.  Yes she knew more this time, but I was tired and not to be messed with.  I wanted to take Emily home.  She tried scare tactics saying she could crash at any time & it wasn’t safe, however I spoke to another DSN who said she will be fine & we could go.  In hindsight another 6 hours would have been a better plan of action but as mentioned I was tired & I really did have Emily’s best intentions at heart.  She was frustrated, bored and wanted to be home in familiar surroundings.

Everything else was uneventful & within 24 hours Emily was back to 100%, looking like nothing had happened.

24hrs

But the point remains serious failures from our Diabetes Team, the Pharmacy & ourselves.  This wasn’t the end of the matter.  The PCT (Now known as the CCG) had to be involved, Boots Pharmacy were investigated.  Insulin vials were taken as evidence & every member was interviewed along with us.

It dragged on a while, we were eventually visited by the PCT & made aware of the findings, Boots were hit with a big fine for the error.  New guidelines were announced for every Boots Pharmacy which meant Glulisine & Glargine no longer shared the same fridge.  In fact they’re meant to be nowhere near each other.  We received an apology from Boots & that for us was the end of the matter.

I would like to think we & Emily suffered that awful day so that no-one else would have to.  If the changes stop it happening in future then it was worth all the worry.

The failure remains that at diagnosis not enough information was available from our diabetes team about different types of insulin, in fact we’d never heard of Glulisine or Glargine until that day, just Aprida, which is something I feel still needs to be worked on in clinic.

So in answer to the original question – Clinic, No & Pharmacy, Yes

Question 4 – Most T1 and T2′s are expert patients, do you feel you know more than the Health care professional? Do you ever feel patronised?

Yes, this is why we left our old clinic, everything came from the big book of diabetes.  They were not willing to take the time to care.  It was only through the DOC that I realised just how inept they were.  Undoubtedly we know more than the HCP, we live this on a daily basis.  Each case is different and need to be treated as such.  I think as patients & carers we deserve a lot more respect for what we do.

Question 5 – Have you ever been offered any other lifestyle advice from your pharmacist, Eg – footcare, weight loss, minor ailments?

No, we have always been told Emily is too young to worry about these things.

Thank you for listening to me ramble far too much!

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