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T1 refused insulin repeat prescription - Twitter thread

LittleGreyCat

Well-Known Member
Retired Moderator
Messages
4,388
Location
Suffolk, UK
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Dislikes
Diet drinks - the artificial sweeteners taste vile.
Having to forswear foods I have loved all my life.
Trying to find low carb meals when eating out.
https://twitter.com/CaisterClara/status/1443272924954337280?s=20

This seems to have been fixed, but is an alarming cautionary tale.

There should be no way that a repeat prescription of a life saving drug should be refused until a test has been taken, whatever the circumstances.

Posting it here so that people in general are aware.
 
Thanks for posting @LittleGreyCat, it doesn't surprise me that much. In fact when I went to re order my last repeat prescription online, they had taken off my novarapid. I added a little note requesting the novarapid along with my Lantus which was still on there and also asking them to put it back on the repeat for next time. Got to the pharmacist....no novarapid waiting for me. Off to the actual surgery where the conversation with the receptionist went like this, me, 'my novarapid was taken off my repeat prescription', her, 'Let me check..oh yes', me, 'I need some more', her 'Yep, I'll request the GP to do another prescription, it'll take up to a week'. Luckily I did have enough to last me a couple of weeks but the point is they really don't understand how anxious we get when we are about to run out. I know that if I'd needed it there and then the GP would have rushed to get me some, they're really good but it's the casualness of some people that is annoying. Incidentally the reason it had automatically been taken off was because my last order had been more than 12 months ago, back then they'd given me 3/4 boxes which had lasted me a year as I use about one pen a month.
 

Hi,

I tend to have a med review with my GP once a year?
Lol, one time with a new GP he asked. "Do you still need insulin??"

Oddly, I notice I've had the Lantus reusable pen AllStar pro removed from the list.. Presumably I haven't ordered one in over 3 years..
I would probably need to explain what it was & put in a special order, if I did need another spare.

Ah, the mother writes on a Tweet "GP has said cause she hasn’t had a checkup with them she can’t have anymore repeat prescriptions, but her consultant does all this."

This may well explain how it all went wrong.. No GP med review??
 
The last time I went to the pharmacist to get insulin he told me I could be ordering more bottles of the stuff than the 2 x 10ml that I usually get.
I did get into trouble once when the prescription came back with short acting insulin pens rather than lantus.
Thought I could manage with short acting until the mistake was resolved and ended up DKA and being very told off for taking up an acute care bed. Ironically I am now on 24/7 short acting via the pump of course.
But yes agree that it is ignorance that would lead to someone being denied a regular life sustaining medication whose absence leads to such an acute decline in health for a type 1.
 
Here is a letter (edited!) which I wrote 9 years ago to the Complaints Manager of our Surgery Pharmacy:

19th November 2012
Dear Ms,
Thank you for taking the trouble to write to me on 16th November and for clarifying matters raised in my letter to J C.
As a patient who relies on Insulin being available at all times, I'm sure you appreciate the perception of the Pharmacy system from the user's viewpoint. On being told that even Insulin had been controlled by a quota, I felt that to do nothing was not far short of irresponsible. However, from your explanation it is now clear to me that the problem is essentially external. I would suggest that any patient on life-saving medication needs assurance that they are not cut adrift, purely because of financial considerations.

Those "financial considerations", as outlined in her letter of the 16th effectively said that once the Surgery had reached its quota of insulin and test strips, they were allowed to sell any other stock abroad, since it would gain better prices! My immediate thoughts and response was that if I wanted to live in the USA and risk dying in the gutter, I would have moved over there...
 
I have a med review every year. I suspect it is a regulatory requirement for all repeat prescriptions.
Thankfully, I don't have to attend the surgery. I just have to phone and remind the receptionist to give a GP a nudge to tick a box.
A few things have been removed from my script when I haven't ordered them for 12 months like backup insulin pens in case my pump fails. But these were readded and surgery procedures were changed after a polite but firm phone call to the prescribing pharmacist.

Unfortunately, I think these procedures are dictated to the surgery from on high and they need to be reminded how to play the game, sometimes.
Like most things, arguing with the receptionist is a waste of energy. A friendly call to get them on your side to fight the battle with their colleagues on your behalf is far more productive.
 
This used to happen to me all the time at my old GPs but it was a prescription review that was needed, not blood tests. Every 6 months they were required and every 6 months my mum would have to ring and argue with them. At that point my prescription was insulin, test strips, ketone strips, lancets. They would say "well we need to make sure those items are still needed".
I've also had a pharmacist refuse to give me an emergency supply of lantus when I had to stop using my pump so I had 2.5 days of constant novorapid injections. Lesson learned though.
 
I just can't understand this, what is wrong with health care providers. Apart from potential life threatening consequences, what about the the stress of having to constantly battle, wrangle to receive a decent standard of care
 
I can understand the need for meds reviews as many people suffer from taking too many medications and of course that also means it is vastly inefficient so there should be a push for de prescribing just not insulin for type 1 diabetics. Unless we are mice we haven't been cured yet!! I am also worried that this is symptom of there being more type 2s who need to go onto insulin hence the confusion at the surgeries and at the pharmacists. It is possible for a type 2 to not need insulin anymore.
 
I lost lancets off a repeat prescription and it took 3 months and a fax from the consultant before they went back on. When I complained they put Lantus back on - both begin with an L I guess.

Got through because manufacturer sent me some freebies
 
This happened to me recently. Luckily, I spotted it quite early. Took ages to get an appointment. When I finally got one, I missed the call (as they insisted it must be a phone appointment, but also refused to give me a time to expect the call). When I noticed I'd got a call, whilst I was in the shower (of course), I also found a voicemail from my Doctor.

He said this, clearly reading the notes at the same time: "I have no idea why they want me to do this, and it's a complete waste of everyone's time, sorry. Written you a prescription. And I've put a note on your record that's highly unlikely you'll randomly stop being diabetic any time soon, unfortunately."
 
I really like your doctor's reply ! It sounds like a 'the lunatics are running the asylum' situation'.
 
JMK1954 said:
I really like your doctor's reply ! It sounds like a 'the lunatics are running the asylum' situation'.
Click to expand...
Yeah, when I first met him, it was a bit intimidating how direct and abrupt he is, but it's something I really like about him now I'm used to it.
 

Yes indeed, we really really really want our health care professionals to know the difference between an autoimmune disease and a metabolic disease - if they don't get it - who will??!! I often wish I could go back in time and make it not so that these two different diseases with a same/similar symptom got given the same word...
 
Camoo said:
I just can't understand this, what is wrong with health care providers. Apart from potential life threatening consequences, what about the the stress of having to constantly battle, wrangle to receive a decent standard of care
Click to expand...
I fully sympathise, but we could be having a worse time in some other well known countries! We need to hang on to the NHS , but as @NicoleC1971 says, the providers need to avoid wastage. There is still far too much of it. It doesn't help that if you take a prescription home and find an item is wrong, it can't be repackaged for the right person!
 
I have always insisted on picking up my repeat prescriptions myself since my husband picked up insulin for me and it was not the right one, This was a few years ago when bovine insulin was still available. I was dispensed a 30/70 mixture instead of Hypurin Bovine Lente which I was expecting. The young pharmacist argued with me when I got to the shop ! I think he was a locum.
Since that point, I have always unpacked the pharmacy bag before I leave the shop. It saves a repeat trip if there has been an error and saves waste within the shop. The staff at my branch of Boots always show me the insulin before putting it into a bag, on the grounds that I know what it is supposed to be. That suits me.
 
I want to point out that insulin for type 2 diabetics can be just as important. I am uncomfortable with the idea that all type 2 diabetics are safe from harm if they don't get meds, particularly if high blood sugar levels can cause a cascade of other life threatened conditions, including mental health issues.

I feel that there is a certain amount of dismissiveness in some posters concerning the severity of type 2 diabetes for many.
 

Hi,

This sounds to me more like an error with the dispensing pharmacist & not at the GP's end?
Lol, yep. I tend to check the bag contents prior to leaving the counter too..


Yep, gotta be said. Prescribed meds are prescribed for a reason. Unless there is a medical professional review ascertaining if the patient needs them anymore in the daily course of treatment.

There does seem to be a "protocol" these days regarding cutting the patient off from a script.
It's quite possible it has been put in place to stop patients falling through the net regarding consistent health care?
But it would be better if the surgery communicated with the patient rather than them finding out down the chemist a couple of days later??

A few years back picking up a prescription I was pulled into a side room by a pharmasist checking I knew how to use my meds?
Safe to say I'd only been "doing this for nearly 40 years" at the time.. but it was nice to know the guy cared..
 
Jaylee said:
but it was nice to know the guy cared..
Click to expand...

I know this is off topic but it is suprising to know that people we asume don't care actually do.
Daughter had a PIP assesment a week oe so ago by phone got through it ok and put it out of mind.
Several days after she recieved a phone call from the lady who did the assesment as she was concerned and wanted to make sure my daughter was alright and managing her meds OK sure suprised me.
 
Jaylee said:
A few years back picking up a prescription I was pulled into a side room by a pharmasist checking I knew how to use my meds?

Safe to say I'd only been "doing this for nearly 40 years" at the time.. but it was nice to know the guy cared..
Click to expand...
The pharmacy I have gone to for many years is a bit like that as well, both of the pharmasists have been there for years as owners of the franchise there, and have come out and explained about any new medication I have been prescribed.

It's a bit harder now I get my medication delivered, but there is a note left in the MedAdvisor app which I order my scripts through about any contraindications that may happen.
 
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