National Cancer Survivorship Initiative

The government's Cancer Reform Strategy aims to build on the progress made since the publication of the NHS Cancer Plan in 2000 and to set a clear direction for cancer services for the next five years. It aims to show how by 2012 cancer services can and should become among the best in the world.

The Cancer Reform Strategy made a commitment to improve patients' experience of living with and beyond cancer. As a result, the The National Cancer Survivorship Initiative has been established to consider a range of approaches to survivorship care.

As a result of discussions with Professor Mike Richards, Pancreatic Cancer UK was invited to join a coalition of cancer charities set up at the instigation of Mike Richards to further the cause of the cancers outside the big four of breast, lung, bowel and prostate. The name adopted by the coalition Cancer52 reflects the fact that 52% of cancer mortality is due to cancers outside the big 4.

Pancreatic Cancer UK, as a member of Cancer52, was invited to participate in a stakeholder consultation as part of the Research workstream of the National Cancer Survivorship initiative, to identify research priorities around the survivorship needs of people affected by the less common cancers.

This event was part of the research workstream of the National Cancer Survivorship Initiative (NCSI) and is an important initiative that has developed from the Cancer Reform Strategy (2007).

The NCSI research workstream is mapping the cancer survivorship journey. It is now recognised that people living with cancer have needs that go beyond their medical treatment. A 'cancer survivor' is the term now commonly used to describe anyone living with or beyond cancer.

This mapping project has been completed for the 4 major cancer sites and cross cutting themes have been identified. To begin to map the survivorship journey for people living with less common cancers there was a stakeholder consultation event to hear the views of the charities and the people they represent.

The aim of the event was to hear what the charities think is known about the survivorship needs of the people your organisation represents and where they think more research is needed.

Pancreatic Cancer UK was represented by the Chair Sue Ballard and three survivors Alison Stunt, Michael Jarzebowski and Trace Allen. Alison also produced a survey which was sent to other survivors and carers to gather information from a wider group of people and to help define a pathway of needs for those affacted by pancreatic cancer.

photos of the event:

Dr Adrienne Morgan Cancer 52 secretariate, attendees

Michael Jarzebowski, Sue Ballard, Trace Allen, Alison Stunt and working sessions

Michael taking part in working session and Alison speaking during the discussions