UK Coalition event October'95
A B O U T T H E S E P A G E S
Marie Nally (a woman with breast cancer) and Nina Pope (a multimedia artist) launched the UK Breast Cancer Awareness web site in October 1995. Following Marie's diagnosis with metastatic breast cancer in 1994, we had used the Internet to search for information on treatment. There were innumerable cancer-related and breast cancer-specific sites but the majority originated in the USA and none related specifically to those affected by breast cancer in the UK. In September 1995, we decided to set up a web site for October Breast Cancer Awareness Month.
Working from a (as it was known then) Cancer Relief Macmillan Fund press release of events and a Channel 4 booklet listing support and research organisations, we built the prototype of the web site as it exists today. The site had 6334 hits in the first month on-line. In addition to the original Home Page, Cancer Contacts - UK Listings, and Hotlist, the site now includes pages on Patients' Rights, Breast Self-Examination, Book Reviews, Feedback and an on-line exhibition of the photographic work of Jo Spence. The site's typical hit count is roughly 10,000 per month. During October or immediately following media coverage, the hit count is much higher.
As friends who know each other's skills, strengths, opinions and priorities, we work together intuitively. The site developed organically and gradually in the time we have been able to give to it. We launched on free web-space provided by Nina's then-employer, the Bartlett School of Architecture. In March 1996, we moved the site to Easynet, on space offered by Eva Pascoe. We have never sought or had funding, other than free web space, and we value our independence.
The Cancer Contacts - UK Listing contains details of over 25 organisations which provide information and support or undertake research related to breast cancer. Incredible as this may sound, none of these organisations yet had its own fully-fledged web site when we went on-line and only a few even had an e-mail address. Several of the support organisations ran telephone hotlines without the back up of in-house Internet access to enable rapid informed replies to queries such as "what clinical trials would I be eligible for?" This situation, which has begun to change slowly, reflects the under-resourcing and decentralisation of cancer research and support in Britain. In the past two years Marie Curie, Europa Donna, Women's Nationwide Cancer Control Campaign and BACUP have launched their own websites. Breast Cancer Care and Cancerlink are now accessible via e-mail.
From the outset, we have invited representatives from the organisations included in our Cancer Contacts to submit and/or approve the material about their organisation which appears on the site. We have also invited members of staff from each of these organisations to view the site on-line with us. We have given site tours and introductions to the Internet to over a dozen takers from Breast Cancer Care, BREAKTHROUGH, Marie Curie, the Women's Environmental Network, Women's Nationwide Cancer Control Campaign, and other organisations.
Through 1996, the Breast Cancer Awareness web site developed a standing body of information which could be maintained with a minimum of input or extended indefinitely. Elements of the site, such as the Breast Self-Examination page and information from WEN on the possible link between environmental pollutants and breast cancer were added in response to e-mail from site visitors. Slow progress was made in our campaign to win over organisations working for those affected by breast cancer to the value of the Internet.
The on-line exhibition of Jo Spence's work, launched in October Breast Cancer Awareness Month 1996, represented a decision on our part to develop subjective, substantive content related to personal experience of breast cancer. We had each had an interest in Jo Spence's work since before we knew one another and had discussed its inclusion since the inception of the site. The Feedback section, also added in October 1996, reflects our interactive relationship with site visitors via e-mail. The Diary page, which first appeared in December 1996, documents our real-life contacts and activities related to breast cancer. A more overt editorial opinion is present in each of these deveopments.
Media coverage has included get netted, a Channel 4 series aired in May 1996 and articles in the Nursing Times (6 Nov 96) and Computer Life (Feb 97).
We wish to continue developing substantive content which will empower those affected by breast cancer in the UK- exploring personal experiences and campaigning on treatment and research issues. Effectively maintaining an information web site for those affected by breast cancer in Britain would be a full-time job. The fact that this role has not been undertaken by any cancer organisation reflects the under-resourced, voluntary, and fragmented nature of this sector. A wide knowledge of both the real-world and virtual resources would be required and would need to be continually up-dated. As intuitive, organic, sporadic and lop-sided as our efforts have been, the UK Breast Cancer Awareness web site has filled a gap (for longer than we ever imagined would be necessary) and will continue to do so.
If you do discover a number or link that is incorrect please let us know! We would like this site to develop beyond an on-line version of printed matter, making maximum use of the potential of the World Wide Web. ANY feedback you can give us is most welcome. All the organisations and charities are listed with their consent, and all information should be correct and up to date.
Marie Nally
up-dated 12 February 1998