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6th National Pancreas Diseases Patient and Public Forum

Patients and staff at the Royal Liverpool University Hospital are to host the 6th National Pancreas Diseases Patient and Public Forum, which aims to highlight, discuss and develop the care of people with pancreas diseases.

The Trust is one of the largest specialist centres for diagnosing and treating pancreas diseases, with major clinical research programmes aimed at improving patient care, supported by the National Institute for Health Research (NIHR). Following the first National Pancreas Diseases Patient and Public Forum in Liverpool in 2013, the Liverpool Pancreas Patient and Public Involvement Group was formed and they have now organised the 6th event, to be held on 17 May in the Royal’s Education Centre.

The purpose of the forum is to raise awareness of pancreas diseases, support research, strengthen patient influence and support patients, families and carers. The free event is open to all, including patients, carers, researchers and health professionals, and everyone who attends is encouraged to meet, network and share experiences. There will also be stands from charities and organisations concerned about pancreas diseases.

“This year’s event has been shaped by feedback from last year,” said Karen Manby, the chair of the Liverpool Pancreas Patient and Public Involvement Group. “We are delighted to have leading and respected guest speakers from all over the country to discuss recent research and updates in the care of both adults and children with pancreas diseases. Specialists will give talks on diet and the pancreas, as well as mental health issues that can occur with a pancreas disease diagnosis. Patients will also give talks on work the group have undertaken to improve results for those with pancreas diseases.”

Pancreatitis and pancreatic cancer are major problems in the UK that hugely affect people’s lives. Despite this, most people never think about their pancreas, where it is, what it does or how vital it is, until it goes wrong.

“The pancreas makes juice needed in the bowels to digest and absorb food. Without this, food passes through the bowel undigested. The pancreas also makes insulin and other hormones needed for the body to use sugar as energy. When the pancreas cannot produce insulin, it has to be injected to keep it alive,” explained Professor Robert Sutton, NIHR senior investigator who founded the forum and later supported the formation of the patient group in 2014.

“Acute pancreatitis occurs in about 50 people out of every 100,000 of the population every year, from gallstones, alcohol or other less common causes. Acute pancreatitis leads to severe pain and lack of ability to digest food. Parts of the pancreas may die (gangrene inside the body) and the dead parts usually become infected. The lungs, heart and kidneys may fail and one out of every 20 to 30 patients will die from acute pancreatitis. The earlier treatment is given the better, but new drugs are needed to prevent complications.”

Chronic pancreatitis develops newly in about 200 out of every 100,000 of the population. This can lead to severe pain that goes on for years and is debilitating, with a permanent loss of ability to digest food. Chronic pancreatitis increases the risk of pancreas cancer markedly, but the risk can be reduced by a healthy lifestyle. The impact of chronic pancreatitis can be reduced by earlier diagnosis and treatment.

“Cancer in the pancreas is a very common but difficult cancer. It develops in almost 20 people out of every 100,000 of the population every year. This cancer leads to poor appetite, inability to digest food, loss of weight, jaundice, itching, abdominal pain, back pain and premature death,” said Professor Sutton.

“The exact causes of pancreatic cancer are unknown and many cases occur out of the blue, affecting healthy men and women. Only one in every five people found to have pancreas cancer survive for one year, and only one in every 20 survive for five years or more after diagnosis. It is vital we diagnose this cancer earlier and develop new treatments.”

You can find out more about pancreatitis and pancreatic cancer at the event on 17 May. Further information regarding the event including venue details, expenses and directions are available after registration.

To register, email Pancreaticforum@rlbuht.nhs.uk or call 0151 706 2308