Shape the future of pancreatitis research
We are delighted to be funding a Priority Setting Partnership (PSP) into pancreatitis. But what is a PSP, and why is it so brilliant?
What is a PSP?
The James Lind Alliance (JLA) helps set up PSPs for a wide range of diseases. The purpose of a PSP is to identify and prioritise the unanswered questions for certain medical conditions, or areas of health.
The process of a PSP brings together patients, carers, doctors, nurses, scientists, researchers, dietitians and other health professionals, all with an equal voice. Together, they will decide the top ten research priorities for their condition.
Why did Guts UK choose to fund a PSP for pancreatitis?
Our guts have been underfunded and undervalued for decades. A PSP has never before been completed into pancreatitis. It’s time we change that. Guts UK is proud to initiate this huge step forward for this misunderstood condition.
- What is pancreatitis?
- How many people have pancreatitis and how does it affect people’s lives?
30,000 people are affected by acute pancreatitis each year. There is little data on the amount of people living with chronic pancreatitis in the UK, but there are 12,000 hospital admissions per year for those living with chronic pancreatitis.
Sadly, acute pancreatitis can be fatal. Of those who will become severely unwell with severe acute pancreatitis requiring ICU care, 1 in 4 will die. Others may spend weeks to years recovering from their attack, depending on the severity and the time spent in hospital. Some people may have to learn to walk or speak again and some may also develop chronic pancreatitis.
Chronic pancreatitis for most is life changing. Many people live in pain and experience further complications such as developing type 3c diabetes. Those with chronic pancreatitis may struggle with losing too much weight. Many drugs are needed to treat this condition, such as multiple enzyme tablets with each meal. As with any chronic condition, sufferers may suffer psychological symptoms such as depression and relationship problems.
“ I was 8 years old when I had my first pancreatitis attack. This began my 12 year journey of managing an undiagnosed condition. I had an unheard voice for 12 years… Pancreatitis changes your life and who you are; it takes away precious time and moments that should be spent with the people you love.”– Elise
How might this PSP change the future of pancreatitis research in the UK?
We look forward to gathering everybody affected by pancreatitis in the UK into one place, together with healthcare professionals, with one common goal; discover the gaps in research and work out the top 10 priorities for pancreatitis.
Pancreatitis is a misunderstood and undervalued area of health. Guts UK believes a PSP is the best way forward to ignite true and lasting change. We hope this PSP will ignite a change in attitudes, and lead to increased research funding for pancreatitis in the UK.
Every single person who wants to have their say in the UK will get their chance to do so.
Helen West, Guts UK’s Patient / Public Involvement & Engagement Officer will be sending updates about the PSP, including timings and when you can expect to be involved by email. For the latest updates, sign up below:
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