Should more be done to inform patients of shortages?

eggyg said:
Thanks for that Eddy. I’m going to write to my MP ( and I advise anyone else having this problem to do likewise) to add my support for PLANETS a call for action.
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Is there a petition to government to get them to debate the medication shortages on something like change.org?
I would definitely sign it if there was.
Sadly, it only requires MPs to debate it but that is a good start to bring it to the attention of, potentially, more MPs to then do something.
 
As well as pressuring the politicians, I'd also be inclined to get a bunch of people to target Viatris via their SM accounts, eg: https://twitter.com/viatrisinc

"What are you doing about this life-threatening issue? It's your responsibility to fix it & I have zero interest in your excuses. Just get it done! Or the world will just assume you don't give a sh*t" etc etc

They certainly care about their reputation even if UK Creon revenue probably is relatively small. They have a bunch of other medications, some/most of which seem to be more or less generic.

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helli said:
Is there a petition to government to get them to debate the medication shortages on something like change.org?
I would definitely sign it if there was.
Sadly, it only requires MPs to debate it but that is a good start to bring it to the attention of, potentially, more MPs to then do something.
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I don’t know but it’s worth writing to your MP. If all of us who are affected by shortages did, it would definitely help.
 
Eddy Edson said:
As well as pressuring the politicians, I'd also be inclined to get a bunch of people to target Viatris via their SM accounts, eg: https://twitter.com/viatrisinc

"What are you doing about this life-threatening issue? It's your responsibility to fix it & I have zero interest in your excuses. Just get it done! Or the world will just assume you don't give a sh*t" etc etc

They certainly care about their reputation even if UK Creon revenue probably is relatively small. They have a bunch of other medications, some/most of which seem to be more or less generic.

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I’m not on Twitter/X but Mr Eggy is. I’ll get him on the case.
 
Eddy Edson said:
As well as pressuring the politicians, I'd also be inclined to get a bunch of people to target Viatris via their SM accounts, eg: https://twitter.com/viatrisinc

"What are you doing about this life-threatening issue? It's your responsibility to fix it & I have zero interest in your excuses. Just get it done! Or the world will just assume you don't give a sh*t" etc etc

They certainly care about their reputation even if UK Creon revenue probably is relatively small. They have a bunch of other medications, some/most of which seem to be more or less generic.

View attachment 31014
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I found them on Instagram. I’m not a big user and wasn’t too sure what to do but initially I’ve sent them a message asking them to explain the chronic shortage in the UK.
 
helli said:
Is there a petition to government to get them to debate the medication shortages on something like change.org?
I would definitely sign it if there was.
Sadly, it only requires MPs to debate it but that is a good start to bring it to the attention of, potentially, more MPs to then do something.
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Sadly, due to the election, all petitions are closed: https://petition.parliament.uk/
I guess that means nothing will happen until the "summer recession" is over because no one needs medication in the summer. 😡
 
eggyg said:
I found them on Instagram. I’m not a big user and wasn’t too sure what to do but initially I’ve sent them a message asking them to explain the chronic shortage in the UK.
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Good start!

They'll probably come back with a canned msg saying they continue to work closely with their manufacturer (Abbott, I think in Germany for the UK market) blah blah blah.

I'd quiz them about their commitment to delivering at least 90% of UK requirement per month - see eg https://www.neuroendocrinecancer.org.uk/neuroendocrine-cancer-uk-pert-update-30th-may-2024/

How can you square that with the huge difficulty people are having locating supply?
 
What I find really odd is I was taken off Statin due to slightly elevated liver enzymes(GP words, the number looked very high to me!).. However every time I pick up my metformin prescription it includes 2 months worth of Statins. I tell the Pharmacist I have been told not to take them and I certainly don't order them. He told me , he thinks one of the GPs is ordering them for me. I wonder if it it is the porridge hating GP?!!! Or more likely never reading any medical notes.
 
I’ve just read through the advice and it looks like I would vlbe better off staying on my NJ which has creon mixed in already - but how long will they be able to do that too?

I am on Pancrrax powder, which my pharmacy can’t get.
When I had a 3 night stay in hosi the other week even the hospital couldn’t get it and had to bring some over from the other locsl hospital.
Spoke to the pharmacist in my GP today and he is going to put me through for a referal.
I spoke to the dietitian yesterday and her advice was to ring round all the pharmacies.
I am currently only on a low food intake, but trying to increase it so I can get the NJ rrmoved - not looking likely now
 
Eddy Edson said:
Good start!

They'll probably come back with a canned msg saying they continue to work closely with their manufacturer (Abbott, I think in Germany for the UK market) blah blah blah.

I'd quiz them about their commitment to delivering at least 90% of UK requirement per month - see eg https://www.neuroendocrinecancer.org.uk/neuroendocrine-cancer-uk-pert-update-30th-may-2024/

How can you square that with the huge difficulty people are having locating supply?
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I don’t know whether the lean pig thing can be true, can it? Everything I’ve read seems to contradict each other. All smoke and mirrors I think.
 
eggyg said:
I don’t know whether the lean pig thing can be true, can it? Everything I’ve read seems to contradict each other. All smoke and mirrors I think.
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Maybe a decline in the consumption of bacon, ham and pork, with the increase in vegetarianism and veganism, and the NHS pushing processed meat (ham, bacon, sausages) and red meat (fresh pork) as unhealthy?
 
eggyg said:
I don’t know whether the lean pig thing can be true, can it? Everything I’ve read seems to contradict each other. All smoke and mirrors I think.
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10 million pigs are slaughtered each year in UK so supply isn't a issue, just a shame a pharmaceutical company here can't start manufacturing it, though appreciate it would be a long road before they'd get to that stage.
 
eggyg said:
I don’t know whether the lean pig thing can be true, can it? Everything I’ve read seems to contradict each other. All smoke and mirrors I think.
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It's apparent that govt and the professional societies, charities, trusts etc are just going by whatever information Viatris provides, and it seems that they are under no contractual or legal obligation to provide comprehensive detail. Maybe this lack of supply chain visibility is something that needs to be addressed; along the lines of a govt/regulator requirement to have indpendent end-to-end access to & auditing of the supply chain.

My guess is that the lean pork story is a partial factor but even in the linked piece it's clear that nobody really knows how important that is compared to the need to expand production. And I get no sense that anybody has a comprehensive view on how Creon production relevant to the UK (I think actually Abbott in Germany is the Creo manufacturer for the UK) fits into the global picture, in terms of logistics and contractual arrangements.

Eg: Currently there is no Creon shortage here in Oz or in the US as far as I can see; why can't Viatris source from non-Europen production for the UK and Europe? Contractual issues? Profitability? Logistics?

Without these kinds of basic insights it's hard to see how you can formulate a robust govt policy.
 
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eggyg said:
I don’t know whether the lean pig thing can be true, can it? Everything I’ve read seems to contradict each other. All smoke and mirrors I think.
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I've been told that the capsules will be becoming larger which does suggest a change to the formulation and could link to the lean pork issue being part of the problem. I'm sure that lots of other issues are contributing.

I was very excited to get a text from the pharmacy and hoped my Creon was in. No such luck. They have been texting only when the whole order was in up until now but must have given up waiting. Last month I was issued an NHS prescription and managed to get some from another pharmacy. The other pharmacy doesn't have any in either and told me that supplies are appearing randomly and are being split between pharmacies.
 
soupdragon said:
I've been told that the capsules will be becoming larger which does suggest a change to the formulation and could link to the lean pork issue being part of the problem. I'm sure that lots of other issues are contributing.

I was very excited to get a text from the pharmacy and hoped my Creon was in. No such luck. They have been texting only when the whole order was in up until now but must have given up waiting. Last month I was issued an NHS prescription and managed to get some from another pharmacy. The other pharmacy doesn't have any in either and told me that supplies are appearing randomly and are being split between pharmacies.
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Back in the day when I first started on Creon, 2007, the capsules were 40k, they were huge! They stopped those quite a while ago after a few shortages and being issued with the 10ks for a while which wasn’t ideal having to take loads to make it up to 120k! They cited lack of materials then, which I couldn’t understand as they were still making 25k and 10k. :confused: It’s an absolute mess.
 
My local pharmacy in Suffolk is rather good and have managed to find enough for my 7 bottles! Made sure they had fulfilled my friends needs first (they have CF)
I was down to my last day of creon on reduced amounts. After calling all round I had located a pharmacy near Stanstead (my brother lives near there) which could let me have a couple of bottles and was going to drive through with a written prescription when I thought I'd check the local pharmacy. They had just got in a delivery and were sharing out stock to those who need it most! Mine was just a few weeks overdue.
I wonder if the 90% of delivery figure is being met! Somehow I don't think so judging by the amount of people in dire need...
 
Apparently my pharmacy is getting one delivery a week of 500 25K capsules and they have 6 patients so are working through people in rotation. It was a bit busy so didn't get into the debate about how they're prioritising but hopefully it will be 'my turn' soon which will ease the worries for a week or two and can then start again.

Although doing the sums of 500 capsules every six weeks and I need 500 every 4 weeks....
 
Good to see some people getting some even if limited supplies of Creon.
I have moved from my pharmacy next to GPs who have been very good to an Internet pharmacy ( who are literally based a mile from where I live and can walk to and they do free local delivery).
I moved as they seemed able to get Creon where my normal one could not.
My latest prescription has just been delivered and although my request is for 3 bottles they at least delivered one a d the rest to follow with no date given.
 
Wendal said:
Good to see some people getting some even if limited supplies of Creon.
I have moved from my pharmacy next to GPs who have been very good to an Internet pharmacy ( who are literally based a mile from where I live and can walk to and they do free local delivery).
I moved as they seemed able to get Creon where my normal one could not.
My latest prescription has just been delivered and although my request is for 3 bottles they at least delivered one a d the rest to follow with no date given.
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Hadn't thought of Internet Pharmacy but a quick check and it looks like they only accept people in England. I'm guessing the free prescriptions for Wales and Scotland makes it all a bit too complicated.
 
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