Should more be done to inform patients of shortages?

Eddy Edson said:
Blah!

Have you tried the hospital route - do you have a hospital-based team?

(Looking at the alternative suppliers, their usual business seems to be supplying hospitals with unlicensed drugs.)

I still think it wouldn't hurt trying to contact those suppliers directly - chances are you'll get the brush-off, but on the other hand maybe you'll find a kind soul who can give you some intel about where to find supplies.
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I don’t have a hospital team unfortunately. Never seen an endocrinologist in the 17 years since my op. I sort of think I’ve slipped through the net as I manage very well on my own and don’t make a fuss. Until now that is. Because my GP surgery doesn’t really know anything about Type 3c they’ve been happy to let me get on with it. I really wouldn’t know where to start with contacting the manufactures, I may ask my pharmacist for some advice on that. I can’t imagine they’ll give me a years worth maybe chuck me a pot of 100 which lasts a month! Thanks for your thoughts and ideas though.
 
eggyg said:
I don’t have a hospital team unfortunately. Never seen an endocrinologist in the 17 years since my op. I sort of think I’ve slipped through the net as I manage very well on my own and don’t make a fuss. Until now that is. Because my GP surgery doesn’t really know anything about Type 3c they’ve been happy to let me get on with it. I really wouldn’t know where to start with contacting the manufactures, I may ask my pharmacist for some advice on that. I can’t imagine they’ll give me a years worth maybe chuck me a pot of 100 which lasts a month! Thanks for your thoughts and ideas though.
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Smartway, one of the unlicensed Creon suppliers, has an online pharamcy subsidiary: https://smartwaypharmacy.co.uk/

Easy enough to check with them, no?
 
I recognise your fear @eggyg. I get through a tub of 100 x 25k capsules in 3-4 days. I'm already mixing 25k and 10k capsules to eke my Creon out. I started gently reducing my total consumption and a week with 3 mishaps later I've gone back to my former full usage. I'm now trying to more accurately decide what changing my preferred food choices might achieve. It's worrying.

That said I asked my pharmacy, Tesco, what their prognosis was and was told that so far they've had to split orders but managed eventually to round up enough Creon to satisfy everyone so far. They say their Head Office have no better idea about future supplies. The lady I spoke with also commented that while she, as the individual pharmacist who talks with me and can see my concern and frustration, can wholly empathise with me it is unrealistic for her (or me) to expect Tesco Head Office Pharmacy folks to appreciate how much angst this can cause; and of course "up there" even with their full empathy they probably can't do much anyway for the various shortages that exist.

Normally there are alternatives, either from different manufacturers or even a different approach with a different med. But for Creon the alternative PERT meds also seem to be constrained - enough to fulfil their normal demand and supply remit, but not to pick up the slack for Creon. I have Nutrizym on my prescription as a backup and have requested some of that as well. My recent repeat prescription request got caught up in the IT outages of last Friday; so I'm waiting to see how that unfolds. When, c. 2yrs ago, thee was a Creon shortage I was given Pancrease capsules. They were larger and more difficult to swallow, with an unpleasant taste from the outer capsule; so they wouldn't be my first choice; but if necessary ....
 
Proud to be erratic said:
I recognise your fear @eggyg. I get through a tub of 100 x 25k capsules in 3-4 days. I'm already mixing 25k and 10k capsules to eke my Creon out. I started gently reducing my total consumption and a week with 3 mishaps later I've gone back to my former full usage. I'm now trying to more accurately decide what changing my preferred food choices might achieve. It's worrying.

That said I asked my pharmacy, Tesco, what their prognosis was and was told that so far they've had to split orders but managed eventually to round up enough Creon to satisfy everyone so far. They say their Head Office have no better idea about future supplies. The lady I spoke with also commented that while she, as the individual pharmacist who talks with me and can see my concern and frustration, can wholly empathise with me it is unrealistic for her (or me) to expect Tesco Head Office Pharmacy folks to appreciate how much angst this can cause; and of course "up there" even with their full empathy they probably can't do much anyway for the various shortages that exist.

Normally there are alternatives, either from different manufacturers or even a different approach with a different med. But for Creon the alternative PERT meds also seem to be constrained - enough to fulfil their normal demand and supply remit, but not to pick up the slack for Creon. I have Nutrizym on my prescription as a backup and have requested some of that as well. My recent repeat prescription request got caught up in the IT outages of last Friday; so I'm waiting to see how that unfolds. When, c. 2yrs ago, thee was a Creon shortage I was given Pancrease capsules. They were larger and more difficult to swallow, with an unpleasant taste from the outer capsule; so they wouldn't be my first choice; but if necessary ....
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My pharmacist had said he can’t get any alternatives either. I’ve 6 weeks supply left ( 4 tubs of 25k) if I take the least of my prescribed dose, which is 3 or 4 per meal, and don’t snack. I’m currently trying to take just 1 per meal depending on the food, but only if I’m not leaving the house. When I was away at the weekend I was taking 2 per meal but did have a couple of very near misses! I placed my usual 8 week order for all my meds today. I’ve re ordered Creon too although it’s now 16 weeks since I last received any and that was in two batches two weeks apart. It will seriously impact my life style if I can’t get a regular supply. I have a busy life.
 
I normally get through about a tub a week of the 25K and have about 3 weeks left. I did try reducing the amount I take with the expected (and unpleasant) outcome. I don't have such a busy life at the moment as still recovering from surgery but I do like to leave the house occasionally! My GP has added a couple of options to my prescription list which means it doesn't rely on the pharmacist looking at alternatives. Of the regular pharmacists I see one is really proactive and will go back to the GP to get lists changed or updated if they find a supply of something. The other tends to shrug and say nothing they can do.
 
Standup said:
I normally get through about a tub a week of the 25K and have about 3 weeks left. I did try reducing the amount I take with the expected (and unpleasant) outcome. I don't have such a busy life at the moment as still recovering from surgery but I do like to leave the house occasionally! My GP has added a couple of options to my prescription list which means it doesn't rely on the pharmacist looking at alternatives. Of the regular pharmacists I see one is really proactive and will go back to the GP to get lists changed or updated if they find a supply of something. The other tends to shrug and say nothing they can do.
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I hope you manage to get something.
 
@eggyg It might be worth you getting a prescription for Creon and taking it to Tesco, Elaine, if they still have stocks of Creon.
I really feel for all you people who are needing Creon if this genuinely isn't going to be resolved before 2026. It just doesn't bear thinking about! So sorry to hear that you have had to cancel your holiday. Just awful because it is clearly going to impact your quality of life and comfort and confidence in a very big way and must be incredibly worrying.
 
rebrascora said:
@eggyg It might be worth you getting a prescription for Creon and taking it to Tesco, Elaine, if they still have stocks of Creon.
I really feel for all you people who are needing Creon if this genuinely isn't going to be resolved before 2026. It just doesn't bear thinking about! So sorry to hear that you have had to cancel your holiday. Just awful because it is clearly going to impact your quality of life and comfort and confidence in a very big way and must be incredibly worrying.
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You’re right about the confidence thing Barbara, I worry anyway when I’m out and it’s gotten worse as the years go on as every chronic condition usually does. Needing to know if there’s a loo handy or even some hidden bush. I’m not embarrassed to say that’s happened on our long walks a few times. I’m not one for just staying home as you know. I’ve just told my girls all about it and having to cancel our holiday. They are absolutely fuming on my behalf. I’ll ring Tesco now. Xx
 
Confidence is a fragile thing and getting it back once you lose it is really tough, especially as you get older and I can totally understand this sort of thing really knocking your confidence and potentially being quite isolating. I know my mother had a couple of episodes when out shopping, when she was caught short after 3 bouts of acute pancreatitis. She was never prescribed PERT of any sort and she had awful pain with it pretty well every day as well as the inconvenience of suddenly having to "go" and it stopped her from going out in the end. Wish I knew then what I know now as I would have pushed for her to be prescribed it.
Keeping fingers tightly crossed you can get a supply from Tesco. Obviously it is only a very short term thing to tide you over from one month to the next, but a little bit more is better than none.
 
rebrascora said:
Confidence is a fragile thing and getting it back once you lose it is really tough, especially as you get older and I can totally understand this sort of thing really knocking your confidence and potentially being quite isolating. I know my mother had a couple of episodes when out shopping, when she was caught short after 3 bouts of acute pancreatitis. She was never prescribed PERT of any sort and she had awful pain with it pretty well every day as well as the inconvenience of suddenly having to "go" and it stopped her from going out in the end. Wish I knew then what I know now as I would have pushed for her to be prescribed it.
Keeping fingers tightly crossed you can get a supply from Tesco. Obviously it is only a very short term thing to tide you over from one month to the next, but a little bit more is better than none.
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Tesco can’t get it. Superdrug neither. Boots has just rang out. Well, Lloyds and Asda constantly engaged. I’m not hopeful. Eldest daughter has been Googling and come across some digestive enzymes which I’ll ask doc or pharmacist if they’re worth buying. But unfortunately there isn’t any alternative to PERT.
 

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How absolutely frustrating @eggyg and everyone else who is unable to get Creon. I thought I'd share the position statements made by the Pancreatic Society who have two released statements, one for HCPs and one for patients. The patient one has some suggestions on managing with a limited supply, including meal plans, and some other suggestions too. And with anything like this it's important to speak to your GP/HCT before making major changes so do keep making noise because you need the their direction and support. Keep onto them!!

Position Statement: Pert Shortage | Pancreatic Society of Great Britain and Ireland

Pancreatic enzyme replacement therapy (PERT) shortage – advice for the management of adults with pancreatic exocrine insufficiency
www.psgbi.org www.psgbi.org
 
eggyg said:
Yesterday we reluctantly cancelled our forthcoming holiday to Madeira in October. The balance was due at the end of the month so we only lost the deposit. I can’t possible go if I can’t get any Creon and we would lose more and more money the longer I wait. We were going half board, which isn’t something we usually do, but we thought we’d treat ourselves for a change. But I just can’t chance it and I don’t want to spend over £2k to just sit in my room because I’m too scared to go out. We’re very sad about it as Madeira is somewhere we’ve never been and we were looking forward to getting some good walks in. We’re going to book a cottage in the UK instead nearer the time, that way I can cater for myself and know exactly how my body will react and plan accordingly.
I still haven’t had any word from my GP, I rang last Monday and someone was supposed to get back to me. I’m going to chase it today. @Eddy Edson kindly forwarded me some links re the shortage and there’s some advice on there on what to do if I do run out. Apparently us pancreatectomy patients should be top priority along with CF patients. I’ll point that out to my GP, when or if he ever returns my call.
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That's a shame for you both but understand your concerns.
 
Spoke to the lead pharmacist at my GP surgery. Because of my complex gastric issues, it’s not just lack of pancreatic enzymes, he’s going to a meeting on Wednesday and he’s going to bring my case up and call me back Friday afternoon. With, hopefully a plan. He suggested that they may have to refer back to the Freeman Hospital as it was where I was originally prescribed the Creon back in 2007. A lot of the advice they are giving out might not work for me as they suggest less fatty foods, and more fibre and fruit/veg for example, I can’t eat a lot of any of those because of my bowel adhesions. I’ve already cut down on oils/mayo/cheeses etc. as I’ve cut down on my Creon dose. The digestive enzymes you can buy on Amazon etc are an absolutely no no. They don’t have the strength of PERT and there is absolutely no alternatives. He didn’t try and soft soap me by saying it’ll be fine/ it’ll be back in stock soon blah blah blah. He did say I was “lucky” because I had four tubs left! I really don’t know what I’m hoping for TBH but at least I feel like I’m now on their radar and I’ve been heard. It’s been a stressful day all in all.
 
PLANETS Charity issues a strong call for action: https://planetscharity.org/news/pla...shortage-of-life-saving-digestive-drug-creon/

PLANETS has called on the government to intervene urgently over the shortage of a drug that can prevent life-threatening digestive problems in thousands of people with a range of medical conditions.

Neil Pearce (pictured), chairman of PLANETS and a former pancreatic cancer surgeon, has written to Wes Streeting, Secretary of State for Health and Social Care, outlining his “deep concerns” about the lack of pancreatic enzyme replacement therapy (PERT).

The treatment is often referred to as Creon which is the brand name of a commonly-used type of the drug.

He has warned that, unless action is taken quickly to implement interim solutions, the issue will lead to excess and avoidable deaths in this patient group from sepsis and diabetic complications.

PLANETS, which helps patients with pancreatic, liver, colorectal, abdominal (oesophageal and gastric) and neuroendocrine (NET) cancers, estimates around 20,000 people in the UK are affected by the problem.

PERT is prescribed for patients with pancreatic deficiencies caused by a variety of conditions including pancreatic cancer, pancreatic surgery, cystic fibrosis, chronic pancreatitis and neuroendocrine tumours.

Patients who rely on the medication suffer severe abdominal cramps and a particularly unpleasant form of diarrhoea when they are unable to obtain it – typically taking a handful of the tablets with every meal to avoid these symptoms.

Lack of adequate PERT leads to malnutrition, with rapid weight loss, fatigue, vitamin and mineral deficiency, susceptibility to infections and, as many of these patients are diabetic, their blood sugars become increasingly difficult to control.

The shortage has been caused by a number of factors including supply chain issues across Europe exacerbated by leaving the European Union, the lack of a UK manufacturer and a worldwide increase in demand due to a rise in the number of patients living with the conditions related to it.

In addition, current NHS prescribing rules prevent pharmacists from substituting a like-for-like product when a specific brand is specified on the prescription and NHS procurement rules exclude viable supplies from “unlicensed” sources such as US manufacturers.

“We are deeply concerned that the patients we represent remain at significant risk of avoidable, life-threatening complications due to the shortage of PERT despite a National Patient Safety Agency (NPSA) safety alert being released,” explained Mr Pearce.

“I am distressed by the stories I am hearing on a daily basis, including those of palliative pancreatic cancer patients suffering avoidable pain and indignity and some of my own patients from 20 years ago who are now unable to leave the house because of the severity of their symptoms.

“It is evident that the good intentions of the safety alert and the advice issued alongside it are not making a difference to patients in the community whose lives are now dominated by the search for this essential treatment.”

The NPSA safety alert advises that procurement rules are being relaxed to allow the import of PERT from unlicensed sources, but Mr Pearce said there was no evidence that patients in the community were getting access to these supplies.

“Every day we hear stories of patients scouring the country for pharmacists with a supply in stock and travelling as much as 100 miles to get a month’s supply or, in some cases, just enough capsules of this medication to last the weekend,” explained Mr Pearce.

“Patients face a Catch-22 situation where, once they have submitted their prescription to a particular pharmacy, if the medication is not available they receive a credit note for when stocks are available, which in some cases is months, not days.

“Even if they can find a pharmacy with stock, they can’t access it without a fresh prescription from the GP.

“The majority of patients in the community do not appear to have received the official advice to patients and are constantly contacting their nurse specialists, hospital dieticians and support charities for advice.

“The advice on how to eke out supplies and modify diet are helpful for those with mild symptoms, but are inadequate for the many patients with already complex diets and severe enzyme insufficiency.

“Patients in the worst category are advised to “try not to worry” because things might be better in 2025, which seems woefully inadequate.”

Mr Pearce said the latest advice given to GPs advises them to contact their local pharmacies to see what products are in stock and prescribe the particular formulation accordingly – but that the constitution of the treatment makes it difficult to achieve that.

“Unfortunately there is not one standard constitution for PERT, which comprises several different enzymes in different quantities and proportions, so different brands are not always directly comparable.

“Given that it is taking patients several days to track down a pharmacy with supplies, it seems unlikely that any GP outside of a dispensing practice would have time to do the same.”

Mr Pearce has proposed Mr Streeting and the government intervene to require pharmacy chains and suppliers to purchase sufficient wholesale stocks to supply the projected national need and distribute them equally to pharmacies across the UK.

He has also urged the relaxation of rules for pharmacists to allow them to substitute the closest available equivalent PERT product if the exact one prescribed is not available but an alternative is in stock.

“PERT is a very safe product with no foreseeable consequences from overdose,” he said. “In the long term, consideration should be given to developing a UK-based supply chain but these steps will provide an adequate interim solution.”

Mr Pearce has also contacted the chief coroner and national lead medical examiner due to specific concerns about the potential for avoidable and hastened deaths due to sepsis, poor diabetic control and malnutrition in pancreatic cancer patients.
 
So sorry you have had to cancel your holiday @eggyg but totally understandable. I hope that there is a positive response to this urgent problem following the interventions of PLANETS. Keep us updated.
 
Good to hear that someone who knows what they are talking about is highlighting the plight of those struggling to get Creon or any other PERT. in very clear and practical terms and more importantly suggesting what needs to be done to fix the problem, both short term and longer term.

I read the advice from the Pancreatic Society of Great Britain posted above and felt that it very much played down the issue and whilst I understand that they don't want to panic people, I felt that their assessment of the situation fell a long way short of the actual situation.... or at least of the situation being experienced by people on this forum
 
Eddy Edson said:
PLANETS Charity issues a strong call for action: https://planetscharity.org/news/pla...shortage-of-life-saving-digestive-drug-creon/

PLANETS has called on the government to intervene urgently over the shortage of a drug that can prevent life-threatening digestive problems in thousands of people with a range of medical conditions.

Neil Pearce (pictured), chairman of PLANETS and a former pancreatic cancer surgeon, has written to Wes Streeting, Secretary of State for Health and Social Care, outlining his “deep concerns” about the lack of pancreatic enzyme replacement therapy (PERT).

The treatment is often referred to as Creon which is the brand name of a commonly-used type of the drug.

He has warned that, unless action is taken quickly to implement interim solutions, the issue will lead to excess and avoidable deaths in this patient group from sepsis and diabetic complications.

PLANETS, which helps patients with pancreatic, liver, colorectal, abdominal (oesophageal and gastric) and neuroendocrine (NET) cancers, estimates around 20,000 people in the UK are affected by the problem.

PERT is prescribed for patients with pancreatic deficiencies caused by a variety of conditions including pancreatic cancer, pancreatic surgery, cystic fibrosis, chronic pancreatitis and neuroendocrine tumours.

Patients who rely on the medication suffer severe abdominal cramps and a particularly unpleasant form of diarrhoea when they are unable to obtain it – typically taking a handful of the tablets with every meal to avoid these symptoms.

Lack of adequate PERT leads to malnutrition, with rapid weight loss, fatigue, vitamin and mineral deficiency, susceptibility to infections and, as many of these patients are diabetic, their blood sugars become increasingly difficult to control.

The shortage has been caused by a number of factors including supply chain issues across Europe exacerbated by leaving the European Union, the lack of a UK manufacturer and a worldwide increase in demand due to a rise in the number of patients living with the conditions related to it.

In addition, current NHS prescribing rules prevent pharmacists from substituting a like-for-like product when a specific brand is specified on the prescription and NHS procurement rules exclude viable supplies from “unlicensed” sources such as US manufacturers.

“We are deeply concerned that the patients we represent remain at significant risk of avoidable, life-threatening complications due to the shortage of PERT despite a National Patient Safety Agency (NPSA) safety alert being released,” explained Mr Pearce.

“I am distressed by the stories I am hearing on a daily basis, including those of palliative pancreatic cancer patients suffering avoidable pain and indignity and some of my own patients from 20 years ago who are now unable to leave the house because of the severity of their symptoms.

“It is evident that the good intentions of the safety alert and the advice issued alongside it are not making a difference to patients in the community whose lives are now dominated by the search for this essential treatment.”

The NPSA safety alert advises that procurement rules are being relaxed to allow the import of PERT from unlicensed sources, but Mr Pearce said there was no evidence that patients in the community were getting access to these supplies.

“Every day we hear stories of patients scouring the country for pharmacists with a supply in stock and travelling as much as 100 miles to get a month’s supply or, in some cases, just enough capsules of this medication to last the weekend,” explained Mr Pearce.

“Patients face a Catch-22 situation where, once they have submitted their prescription to a particular pharmacy, if the medication is not available they receive a credit note for when stocks are available, which in some cases is months, not days.

“Even if they can find a pharmacy with stock, they can’t access it without a fresh prescription from the GP.

“The majority of patients in the community do not appear to have received the official advice to patients and are constantly contacting their nurse specialists, hospital dieticians and support charities for advice.

“The advice on how to eke out supplies and modify diet are helpful for those with mild symptoms, but are inadequate for the many patients with already complex diets and severe enzyme insufficiency.

“Patients in the worst category are advised to “try not to worry” because things might be better in 2025, which seems woefully inadequate.”

Mr Pearce said the latest advice given to GPs advises them to contact their local pharmacies to see what products are in stock and prescribe the particular formulation accordingly – but that the constitution of the treatment makes it difficult to achieve that.

“Unfortunately there is not one standard constitution for PERT, which comprises several different enzymes in different quantities and proportions, so different brands are not always directly comparable.

“Given that it is taking patients several days to track down a pharmacy with supplies, it seems unlikely that any GP outside of a dispensing practice would have time to do the same.”

Mr Pearce has proposed Mr Streeting and the government intervene to require pharmacy chains and suppliers to purchase sufficient wholesale stocks to supply the projected national need and distribute them equally to pharmacies across the UK.

He has also urged the relaxation of rules for pharmacists to allow them to substitute the closest available equivalent PERT product if the exact one prescribed is not available but an alternative is in stock.

“PERT is a very safe product with no foreseeable consequences from overdose,” he said. “In the long term, consideration should be given to developing a UK-based supply chain but these steps will provide an adequate interim solution.”

Mr Pearce has also contacted the chief coroner and national lead medical examiner due to specific concerns about the potential for avoidable and hastened deaths due to sepsis, poor diabetic control and malnutrition in pancreatic cancer patients.
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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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