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If you or someone you know has pancreatic cancer, planning for the future might feel difficult. You may have heard the term ‘palliative care’ but feel unsure about what this means.    Hosted by specialist pancreatic cancer nurses Simon and Rachel, this webinar will help you understand what palliative care is, what you can expect from it and who is there to provide palliative care and support you towards the end of life. We will also discuss planning for the future and what good end of life care should look like, with time for questions too.     This session is for people with pancreatic cancer and their loved ones. We appreciate these discussions may be upsetting & difficult, and that you may wish to stay for the section on palliative care but not the section on end of life care and we’ll make sure you’re able to leave before this section if you wish.   https://www.pancreaticcancer.org.uk/support-for-you/webinars/palliative-care-for-pancreatic-cancer-webinar-13-november-2024

Hi @Luke1971 Oh that is interesting, I will pass that over, thank you  

My pleasure. It's also worth saying that I walked into a pharmacy in Spain last month, asked if they had any, and walked out with some - easy as that (although it wasn't cheap). That tells me that the "manufacturing issues" situation might, hopefully, be improving. The packaging and name was different ('kreon 25.000U cápsulas'), but it was Creon. And my oncologist last week said that a number of his patients were reporting a gentle improvement in the shortage, even if it's only temporary. Fingers crossed.    

Hi @Luke1971 Thank you for this, and for raising it with your MP   Nadia

I raised this with my MP recently and received the following response.   The new Government has inherited ongoing global supply problems that continue to affect medicine availability in England. We know how frustrating and distressing this can be for patients, and we are working closely with industry, the NHS, manufacturers and other partners in the supply chain to resolve issues as quickly as possible to make sure patients can access the medicines they need. There are around 14,000 licensed medicines, and the overwhelming majority are in good supply. However, medicine supply chains are complex, global and highly regulated and the NHS does occasionally experience temporary shortages of some medicines. There are a number of reasons why supply can be disrupted, many of which are not specific to the UK and are outside the Government’s control; these include manufacturing difficulties, access to raw materials, sudden demand spikes or distribution issues, and regulatory issues. Medicine supply issues are global in their nature and, while we cannot always prevent them, we have a range of well-established processes and tools to manage them when they arise and to mitigate risks to patients. There is a team in the Department that deals with medicine supply problems by working closely with the Medicines and Healthcare products Regulatory Agency, the pharmaceutical industry, NHS England and others operating in the supply chain. We also work with partners to ensure alternative treatments are available to patients until their usual treatments are back in stock. At the time of writing, we are aware of ongoing intermittent supply issues with pancreatic enzyme replacement therapy (PERT), including Creon capsules. These have been caused by limited supplies of active pharmaceutical ingredients and manufacturing capacity constraints. The supplier of Creon has advised that it expects to have regular supplies released each month for the remainder of the year. The Department is continuing to work with all suppliers of PERT products to help resolve the issues, expedite deliveries, source stock from other markets and increase production. We have also issued comprehensive guidance to healthcare professionals, which provides advise on how to manage patients while there is disruption to supply. This guidance is being kept under review and updated will be made as necessary. In addition, serious shortage protocols (SSPs) are in place for Creon 10000 and 25000 capsules to limit prescriptions to one month’s supply; this is to ensure that Creon remains available for those patients who need it. An SSP enables community pharmacists to supply a specified medicine or device with the patient’s consent and without needing to seek authorisation from the prescriber. The Department will continue to work closely with the manufacturers to resolve the issues as soon as possible and to ensure patients have continuous access to medicines. If any patient is concerned about their treatment, they should discuss this with their clinician at the earliest opportunity.    

Hi. I had backache, fatigue in addition to acid reflux. I had been given a series of gastro tests to check what was happening. The tumour was initially shown on a CT scan. This was booked when the GP referred me as a result of the backache and fatigue. A month later a biopsy was taken which showed that the mass on the head of my pancreas was cancer.  It was classified as stage 4. I am currently under palliative care.   The team looking out for me are superb. They check in to see how I am and, post the clinical trial handover back to my oncologist, I  have three monthly reviews.  Good luck with your diagnosis. If you have anymore questions please ask. 

Hi Rowena, what a lovely post to read, I’m so very happy for you. Can I ask what test you had to initially get the diagnosis please? I’ve had pain, low faecal elastase and a few other symptoms for some months now, and have this gut feeling that it’s serious. If I could go to my GP and just request a test that would rule out cancer it may put my mind at rest. Thank you for posting with your update, sending love 💖       

Hi. As some time has passed I thought I would give an update. I am now back at work full time and enjoying some fabulous holidays. I use “Insurewith” for European travel insurance as they cater for travel with cancer. I continue to have 3 monthly CT scan and blood tests. I am so grateful to still be here. I am not up to full strength yet, but the post treatment symptoms including nausea is getting better. The results from the Emerald trial will be peer reviewed at the end of this year and hopefully published spring 2025. 

PERT shortages are continuing to impact people across the UK and it's more important than ever that we let people affected know that we are here to support them.    To reach everyone affected, we need your help. If you have been impacted by the PERT shortages and you would be comfortable sharing your experience with the media, please get in touch: https://www.pancreaticcancer.org.uk/get-involved/share-your-story/   If you have been affected by these shortages and need support, please get in touch. You can speak to a specialist nurse on our Support Line on 0808 801 0707 or via email at nurse@pancreaticcancer.org.uk.  

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