Useful Info

One of our aims is Sharing. We share information and experience, malady making each member organisation more effective in its work.

Many of our member organisations have very limited resources. If they are struggling with a particular issue, they may find that other members can help.

One of the main ways that members share information is through our regular meetings and the networking opportunities that these present. We also encourage publish here reports or consultation documents prepared by Cancer52 to share with its members and wider stakeholders.

If you have documents which you would like to share, or if there is an issue on which you particularly require help and guidance – please contact info@cancer52.org.uk

REPORTS

Cancer52  Position Statement on Value Based Pricing

In November 2012 Cancer52 published its views on Value Based Pricing.

Read the Cancer52 Position Statement on Value Based Pricing 13th November 2012, or feedback comments to jane.lyons@cancer52.org.uk

Cancer52 Second Annual Briefing Report

In October 2012, Cancer52 held its second annual briefing at the House of Lords.  You can read the report here.

NCSI research work stream, less common cancers consultation

Cancer52 was invited to participate in the NCSI work stream to map the research questions relating to the survivorship needs of people affected by the less common cancers. We organised an event for Cancer52 members, to which they were encouraged to bring people directly affected by the less common cancers (survivors and carers). A broad range of issues emerged on the day and these were formulated into research questions and included in the report which was written up for submission to the NCSI.

Download Cancer52’s submission to the NCSI research work stream. (this is about 10MB)
Download 6 page summary of submission

Register my tumour, recognise me

In March 2009, Brain Tumour UK launched a campaign to have all people who are diagnosed with a primary or secondary brain tumour recognized in official health statistics. The charity believes that approximately half of all primary brain tumour patients – around 8,100 people – are missed from official statistics every year. Many more cases of secondary brain cancer – perhaps 32,000 people – are also not recorded in detail. Brain Tumour UK argues that the UK must have comprehensive brain tumour statistics so that the NHS in England, Scotland and Wales, and Health Boards in Northern Ireland, can meet the urgent and complex needs of patients whilst science finds effective treatments for the disease. In Register my tumour, recognise me, launched in March 2009 Brain Tumour UK is calling for health service cancer teams in each country to require data on all brain tumours to be reported for cancer waiting times; data on all brain tumours to be collected across the UK, to the standards specified by the National Institute for Clinical Excellence, by the end of 2009; and for national governments to specify clear lines of accountability to ensure that comprehensive data is collected.

Download Register my tumour, recognise me.

Brain Tumour UK submission to All Party Parliamentary Group on Cancer Inquiry into cancer inequalities, June 2009

The All Party Parliamentary Group on Cancer was founded in 1998 to keep cancer at the top of the political agenda. The Group brings together MPs and Peers to help improve cancers services.

In April 2009 the group launched an inquiry into cancer inequalities with the aim of: assessing the inequalities in cancer that currently exist; seeking out examples of good practice in tackling inequalities; considering what more can be done by 2012, and beyond, to improve outcomes and create more equality in cancer care; and make key recommendations to Government, the National Cancer Equality Initiative, and the NHS on tackling inequalities.

They invited written submissions, followed up by oral evidence, to be compiled in an inquiry report which will be launched at the Britain Against Cancer conference (http://www.macmillan.org.uk/GetInvolved/APPG/ConferenceDetails.aspx) in December 2009.

Brain Tumour UK have shared their submission to the Inquiry into cancer inequalities. Download Brain Tumour UK’s submission to the Inquiry into cancer inequalities.

Click here to find out more about the Inquiry into inequalities http://www.macmillan.org.uk/GetInvolved/APPG/ReportsAndEvents/InquiryIntoInequality.aspx

EXAMPLE POLICIES

Policy on working with the pharmaceutical industry

Many cancer charities have working relationships with pharmaceutical companies and other organizations involved in the manufacture and marketing of drugs and other treatments for cancer. Often these companies can provide financial and other support to help charities meet their objectives.

Although there are undoubtedly benefits in working with these companies, there are potential conflicts of interest and it is perceived to be good practice to establish guidelines governing such relationships.

Orchid have shared with us their policy on working with the pharmaceutical industry. Read it/download it here.