Should more be done to inform patients of shortages?

H

helli

Well-Known Member
Relationship to Diabetes
Type 1
I see the shortage of pre-filled Fiasp pens has made it to the BBC news.
I think most regular Type 1 contributors on here are aware of such shortages and know to look at the Diabetes UK website. But, clearly, this is not known by everyone.
Should checking for medication shortages be part of our own self care or should more be done, especially when there is an obvious alternative? For example, in the case of Fiasp, the shortage is with the prefilled pens, so should there be an (automatic?) change to prescriptions for reusable pens with a note to the patient triggered by the shortage notification? Or can Diabetes UK do more to make people aware of shortages?
 
These shortages always come bundled with so much stress and anxiety for those affected.

I really can’t remember a time when so many different things were running short for so long.

And some of these shortages are meaning people are having to be swapped away from meds they know well, and which work for them - and there isn’t always a simple or straightforward alternative. :(
 
I saw that article this morning and I agree, patients need to be informed and be offered alternatives or suggestions at the very least. I read an article last week about the ongoing Creon shortage. I’m now having to ration my remaining capsules as apparently this could last until 2026! Not one person from my GP surgery has been in touch re this. I am going to contact them today and ask them what do they suggest I do. According to the article there’s 61,000 Creon users in the UK, quite a few will be Cystic Fibrosis patients who take a lot of Creon. I can reduce my dose and alter my diet and/or never leave the house, drastic but true, A CF patient can’t reduce their dose. The sad thing is, it's not a shortage of the drugs it’s all about money, and Brexit is a part of it too. I’m off to write a very strongly worded email to both my GP and my MP.
 
eggyg said:
The sad thing is, it's not a shortage of the drugs it’s all about money, and Brexit is a part of it too. I’m off to write a very strongly worded email to both my GP and my MP.
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:( :( :(

Yes there seem to be intricate webs of cause and effect threaded through lots of the shortages.

I’m sure I’ve heard that the FlexPen / Fiasp shortage is connected to the ongoing Ozempic debacle - because the same injection devices are used for both and they can keep up with the off label weight loss semaglutide demand. :(
 
everydayupsanddowns said:
I’m sure I’ve heard that the FlexPen / Fiasp shortage is connected to the ongoing Ozempic debacle - because the same injection devices are used for both and they can keep up with the off label weight loss semaglutide demand. :(
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I have heard the same which could explain the Fiasp and Tresiba shortage but why are there no reports of NovoRapid prefilled pen shortage?
 
helli said:
I have heard the same which could explain the Fiasp and Tresiba shortage but why are there no reports of NovoRapid prefilled pen shortage?
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Indeed! The mind boggles.
 
I think it is one of the downsides of the way the NHS has been looked at over the past few years with more and more profit based thinking. This ranges from the way GP operates, the way pharmacies operate and the way the pharmaceutical supply chains operate. Its made worse when we need drugs made in the EU. As @everydayupsanddowns says, it is a complicated picture and I doubt anybody really has an accurate view of it.

The net effect is that the needs of the patient are very much at the bottom of the pile.
 
Wouldn't it be lovely if the prescription computer app was linked to the "shortage alerts" and automatically sent out a message to the patient. Even something as simple as "Contact your GP" could help many people as it could trigger a follow up whether it was a drug replacement (e.g. reusable Fiasp pen or Humalog cartridges) or discussion of alternatives or suggestions on how to reduce.
 
helli said:
Wouldn't it be lovely if the prescription computer app was linked to the "shortage alerts" and automatically sent out a message to the patient. Even something as simple as "Contact your GP" could help many people as it could trigger a follow up whether it was a drug replacement (e.g. reusable Fiasp pen or Humalog cartridges) or discussion of alternatives or suggestions on how to reduce.
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Not necessarily easy for all those people affected by shortages to get appointments with GPs or nurses to resolve the situation promptly as many people struggle to get an appointment for a genuine health concern let alone medication adjustment due to a shortage.
 
rebrascora said:
Not necessarily easy for all those people affected by shortages to get appointments with GPs or nurses to resolve the situation promptly as many people struggle to get an appointment for a genuine health concern let alone medication adjustment due to a shortage
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That is why I did not say "Book an appointment". In many cases an appointment will not be required and in many cases the patient will just ignore it and be in the same situation as they are today so no extra impact on the GP surgery.
By the way, for many the shortage of drugs IS a genuine health concern both the impact on their physical health of not being able to get hold of life giving drugs but the mental health implications.
 
I’ve called my GP prescription team and someone is going to call me back! Then I called my pharmacist with whom I’ve had a very enlightening chat with. They can’t get Creon or any alternatives at all and “reading between the lines” he said it could be the middle of 2026! And it’s definitely about the money. He was very frustrated and couldn’t quite believe it’s gone this far. I have four tubs left, taking what I’m prescribed they will last 40 days. Taking the one a meal I’ve been doing for a few weeks now they’ll last four months. Not even to the end of this year, never mind mid 2026! The pharmacist even suggested a few of us get together and contact the manufacturer. It’s a thought. I’ll do some research.
 
If this forum is anything to go by, there seems to be an increasing demand for Creon and I am guessing that is putting increased pressure on the already limited supply.

@eggyg are you unable to get any Creon at all as I seem to recall that whilst the 25,000 were getting difficult to acquire, the 10,000 capsules were still available.
I wonder if this may be partly as a result of an increase in vegetarianism since I understand it is obtained from slaughtered pigs.
 
rebrascora said:
If this forum is anything to go by, there seems to be an increasing demand for Creon and I am guessing that is putting increased pressure on the already limited supply.

@eggyg are you unable to get any Creon at all as I seem to recall that whilst the 25,000 were getting difficult to acquire, the 10,000 capsules were still available.
I wonder if this may be partly as a result of an increase in vegetarianism since I understand it is obtained from slaughtered pigs.
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Apparently part of the problem is increased demand for lean rather than fatty pork! Presumably because pigs fed on a lower fat diet produce less lipase.
 
There should be a way to be informed of shortages. I’ve had an exasperating time since I posted about Humalog vial shortages a few months back. It’s taken until today to get a prescription for Trurapi vials. I’ve felt as if I had to prove I couldn’t find any Humalog vials. An alert when you go to order online indicating an ongoing shortage and the need to take action would work- I realise not everyone orders online.

My pharmacy kept saying Humalog vials would be back in stock soon, gp pharmacist asked me if I’d rung around all the pharmacists in the locality to source vials. I was told my surgery needed a letter from my pump clinic advising them what was a suitable alternative. Left a voice message for clinic, told it would be dealt with at a MDT meeting a few days later. Letter sent to gp. Surgery called to ask what the prescription for a different insulin was for- as in was I using more than one type. Prescription arrived at pharmacy today.

If there’s a shortage it would be good to be informed as soon as possible and for there to be a less convoluted & time consuming way to get an alternative drug.
 
soupdragon said:
Apparently part of the problem is increased demand for lean rather than fatty pork! Presumably because pigs fed on a lower fat diet produce less lipase.
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Wow! That’s an unintended consequence right there 😱
 
rebrascora said:
If this forum is anything to go by, there seems to be an increasing demand for Creon and I am guessing that is putting increased pressure on the already limited supply.

@eggyg are you unable to get any Creon at all as I seem to recall that whilst the 25,000 were getting difficult to acquire, the 10,000 capsules were still available.
I wonder if this may be partly as a result of an increase in vegetarianism since I understand it is obtained from slaughtered pigs.
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No 10k, no alternatives available either. The pharmacist said I won’t get anything anywhere! The heightened demand was cited on the manufacture’s website. Apparently it’s Europe wise but I’d read last week that the manufacturer gets more money for it in the Euro zone. UK pharmacies aren’t getting enough funding to afford it and I can only assume it’s cheaper to transport around Europe than shipping over to us. Some of it will be politics unfortunately. I don’t know what to do. GP hasn’t phoned back.
 
soupdragon said:
Apparently part of the problem is increased demand for lean rather than fatty pork! Presumably because pigs fed on a lower fat diet produce less lipase.
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What! I’m speechless.
 
Flower said:
There should be a way to be informed of shortages. I’ve had an exasperating time since I posted about Humalog vial shortages a few months back. It’s taken until today to get a prescription for Trurapi vials. I’ve felt as if I had to prove I couldn’t find any Humalog vials. An alert when you go to order online indicating an ongoing shortage and the need to take action would work- I realise not everyone orders online.

My pharmacy kept saying Humalog vials would be back in stock soon, gp pharmacist asked me if I’d rung around all the pharmacists in the locality to source vials. I was told my surgery needed a letter from my pump clinic advising them what was a suitable alternative. Left a voice message for clinic, told it would be dealt with at a MDT meeting a few days later. Letter sent to gp. Surgery called to ask what the prescription for a different insulin was for- as in was I using more than one type. Prescription arrived at pharmacy today.

If there’s a shortage it would be good to be informed as soon as possible and for there to be a less convoluted & time consuming way to get an alternative drug.
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I agree, this stress could maybe have been lessened if we’d known in advance and prepared for it. Why should we have to hear on the grapevine or in the media?
Glad you’ve got sorted but what an absolute ba** ache for you.
 
The shortage in Fiasp pre-filled pens is the materials used to make the pens, not the insulin itself I understand - In one of the pictures in the BBC article a Novopen Echo Plus is being used which requires the penfills (of which there is no shortage - I use them and have never had any problems) - so absolutely if there is a shortage of the pre filled ones you should automatically be given a refillable pen and the associated prescription IMO
 
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