The future – pancreatitis research

The Pancreatitis PSP will ignite true and lasting change for families affected by pancreatitis in the UK & Republic of Ireland. But what is a PSP, and how can you be involved?

The first survey for the Pancreatitis Priority Setting Partnership (PSP) has closed, but you still have the opportunity to tell us what questions you want pancreatitis research to answer in the second survey. Scroll to the bottom of this page and enter your details in the form to receive the second survey once launched.

The PSP for pancreatitis has been months and years in the making. With your help, we can identify the top 10 priorities for pancreatitis research. Whether you’re a patient, carer, family or friend affected by pancreatitis, or if you’re a healthcare professional involved in caring for or treating pancreatitis patients.

This PSP will start us on the path towards true and lasting change for pancreatitis patients in the UK & Republic of Ireland.

“ 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

What is a PSP?

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, 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 pancreatitis PSP?

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?

Acute pancreatitis is a sudden inflammation of the pancreas gland. Chronic pancreatitis is long-standing inflammation of the pancreas (life-long).

  • 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.

How might this change the future of pancreatitis research in the UK & Republic of Ireland?

How might this PSP change the future of pancreatitis research in the UK & Republic of Ireland?

We look forward to gathering everybody affected by pancreatitis in the UK into one place, together with healthcare professionals treating pancreatitis, 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 true and lasting change. We hope this PSP will ignite a change in attitudes, and lead to increased research funding for pancreatitis.

Every single person affected by or treating pancreatitis who wants to have their say in the UK & Republic of Ireland will get their chance to do so.

To know more detail about the pancreatitis PSP, you can read the protocol here.

Helen at Guts UK will be sending out 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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