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UK pancreatic cancer charity launches newly diagnosed patient pack

In a bid to achieve its aim of ensuring everyone diagnosed with in the UK has access to information about its services, UK has launched a ‘newly diagnosed pack’ for patients and will be piloting it’s use in hospitals throughout the UK.

Targeted at busy specialist nurses, Pancreatic Cancer UK’s comprehensive information resource for newly diagnosed patients covers key information about the disease. Nurses can add additional information specific to their hospital to the pack, meaning that for patients, they can store all the information about their treatment and care in one place.

The pack includes details of the Support and Information Service Pancreatic Cancer UK provides to patients and carers, including personalised telephone and email support, a Forum where people can talk to others in similar circumstances and a Live Chat service which runs fortnightly. The pancreatic cancer nurse specialists that run the Support Service provide users with additional medical and factual information, such as answering questions about symptom control or potential treatment or care options. Often this is on an ongoing basis as many people use the service multiple times. It is the only Support Service, dedicated specifically to pancreatic cancer, in the UK.

In a recent survey[1] of Pancreatic Cancer UK’s Support Services users, 100% of the respondents said that they were very satisfied and would use the service again and 100% would recommend the Support Services to others affected by pancreatic cancer. One user of the service commented,

“I want to thank you from the bottom of my heart. The information was just what I needed at a vulnerable time. Unfortunately my Father died only a couple of weeks after diagnosis but I got what I needed at the time and would wholeheartedly recommend your service to anyone else in a similar situation.”

Pancreatic Cancer UK recently achieved certification by The Information Standard, a health and care certification programme supported by NHS England, thereby proving it is a provider of reliable, high quality health information. Following a review of its information production processes, the charity met the programme’s certification criteria and will therefore be able to display The Information Standard quality mark on its literature and website.

Anna Jewell, Head of Support and Information at Pancreatic Cancer UK, comments, “Over the past year our Support and Information Services have gone from strength to strength, with the introduction of our new Live Chat service and now with the certification we have received from The Information Standard. We hope this serves to reassure patients and health professionals alike that the information we provide, including within our ‘newly diagnosed pack’, is reliable and of a very high quality. Demand for our Support Line in particular has been at its highest in the past year, much of which we can directly attribute to key episodes of the Coronation Street pancreatic cancer storyline.”

The Pancreatic Cancer UK Support Line (020 3535 7099) and website (www.pancreaticcancer.org.uk) were advertised after the Coronation Street episodes in which Hayley Cropper was diagnosed resulting in a 50% increase in calls to its Support Line. The charity also had nearly 10,000 visitors to its website in one day, as opposed to a normal daily average of around 600 visits. When Hayley was told her pancreatic cancer was inoperable, the charity received as many calls in that one evening, as it normally receives in one week and these were all new callers.

Any hospitals interested in joining the ‘newly diagnosed pack’ pilot should contact [email protected]


[1] A survey of support line users carried out over a 4 week period, from 1st July until the end of July 2013. The survey included support line users dating back to March 2013, as many of these were recent users and had used the service on several occasions. In total, 135 surveys were sent out. 37 were completed and returned. This represents a 27.4% response rate.

Pancreatic Cancer UK