Dear member

The Mouth Cancer Foundation has been 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 (like head and neck cancers). This event is 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). At the event they want to hear what we think is known about the survivorship needs of the people our organisation represents and where you think more research is needed. They need to hear the voice of the people affected by the cancer that our organisation represents.

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, this stakeholder consultation event is to hear the views of the people with less common cancers. An example of a survivorship model is at the end of this email. (What they hope to do is examine the cross cutting themes identified within the model across the less common cancers as well as feedback information on individual pathways as examples.)

The stakeholder event will be from 11am to 5pm on Tuesday the 9th June 2009 in Central London. Please could you let me know by Thursday 7th May whether you would be interested in attending the event?

I would like about three to four members to attend and represent those affected by survivorship issues. While it might be more convenient for members in the London area to volunteer, traveling expenses will be paid including overnight accommodation and subsistence if necessary.

Even if you are unable to attend, please let us have your views.

Best wishes

Vinod
Chief Executive
Mouth Cancer Foundation
Original Post
I and the cancer survivors and carer who have volunteered will be putting forward your views and comments.

On the 9 June meeting itself we will be working across the tumour boundaries the rarer cancer organizations represent to consider the survivorship pathway through cross cutting themes such as work and finance, self management and information. We will be using the NCSI survivorship pathway model and examples of specific tumour site pathways, which have been produced in conjunction with the NCSI workstream as part of the mapping of the survivorship journey.

We are also invited to present a completed pathway for the mouth (head and neck) cancers by Wednesday 17 June.

There is more information in the NCSI Newsletters which are available to view here.

Your comments and suggestions are welcomed.

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