Reported sites of breast cancer clusters

Albrighton West Midlands Ardsley West Yorkshire Ashton Cornwall Axminster Devon Beauchief South Yorkshire Bexley Kent Birmingham Bobbingworth Essex Bradley West Midlands Bilston West Midlands Boston Lincolnshire Bradford West Yorkshire Bramerton Norfolk Brightstone Hampshire Bristol Avon Bromeswell Suffolk Bucklebury Berkshire Bugbrooke Northamptonshire Carnforth Cumbria Cefn Mawr Wales Chapeltown South Yorkshire Chesterfield Derbyshire Cilcain Wales Clowne Derbyshire Comberbach Cheshire Cookridge West Yorkshire Corby Northamptonshire Cwmbran Wales Darlaston West Midlands Darley Dale Derbyshire Dartington Devon Derby Derbyshire Desford Leicestershire Drighlington West Yorkshire Earls Barton Northamptonshire Eastleigh Hampshire Enfield Middlesex Fakenham Suffolk Fareham Hampshire Farsley West Yorkshire Folkestone Kent Garforth West Yorkshire Gillingham Kent Glenfield Leicestershire Grangemouth Scotland Grange-over-Sands Cumbria Grassington North Yorkshire Great Barr West Midlands Grimsby Lincolnshire Godalming Surrey Gowerton Wales Guildford Surrey Hannington Northamptonshire Harrow Middlesex Helston Cornwall Ingatestone Essex Isle of Man Irthlingborough Northamptonshire Launceston Cornwall Lincoln Lincolnshire Leamington Spa Warwickshire Leeds West Yorkshire Leicester Leicestershire Leven Scotland London E4 N4 NW2 SW3 SW15 Llowes Wales Loweswater Cumbria Lydbrook Gloucestershire Macclesfield Cheshire Maidenhead Berkshire Maidstone Kent Mansfield Nottinghamshire Maldon Essex Milton Keynes Buckinghamshire Morley West Midlands Newcastle-upon-Tyne New Mills West Midlands Newport Wales Northallerton North Yorkshire Northampton Northamptonshire North Creake Norfolk Northfield West Midlands Orkney Islands Scotland Penmaenmawr Wales Peterborough Cambridgeshire Pirbright Surrey Polmont Scotland Portsmouth Hampshire Preston Lancashire Rattery Devon Redcar Teeside Rhostyller Wales Romanby North Yorkshire Rotherham South Yorkshire Rusland Cumbria Saxmundham Suffolk Settle North Yorkshire Sheffield South Yorkshire Sibsey Lincolnshire Slimbridge Gloucestershire Southampton Hampshire Spalding Lincolnshire Stanmore Middlesex Stiffkey Norfolk Stroud Gloucestershire Surfleet Lincolnshire Thornbury Avon Totton Hampshire Totnes Devon Upper Wharfedale West Yorkshire Upper Wortley West Yorkshire Wanborough Wiltshire Washingborough Lincolnshire Waterlooville Hampshire Weldon Northamptonshire Wednesfield West Midlands Whaplode Lincolnshire Winchester Hampshire Wincobank South Yorkshire Woking Surrey Wolverhampton West Midlands Woodbridge Suffolk Wrexham Wales York Yorkshire

Breast cancer hotspots identified by the project

Axminster
Sheffield
Birmingham
Southampton
Bradford
Wolverhampton
Leeds
Wrexham
Northampton
York
Portsmouth

Putting breast cancer on the map

Funded by the National Lottery Charities Board, Putting Breast Cancer on the Map was a project initiated and carried out by the Women's Environmental Network (WEN) from April 1997 until May 1999.

Rationale

The primary basis for this unique project has been the rising incidence of breast cancer in the UK, where the estimated lifetime risk for all women is 1 in 11. According to statistics publicised by the Cancer Research Campaign in February 1999, 635 women are diagnosed with breast cancer and 240 women die from breast cancer each week in the UK.

In considering breast cancer in relation to the communities, conditions and environments in which women live and work, this project is an important contribution to the growing international movement for 'environmental justice'. The environmental justice approach emphasises the importance of understanding why an area such as Lincolnshire for instance, has a 40% higher incidence rate for breast cancer than the rest of the country. This project set out to ask why a breast cancer epidemic is occurring in the UK and sought to identify probable factors within the environment, thus shifting the focus away from disease management to disease prevention.

Aims and objectives

To gather women's perceptions of the relationship between their environment and their health with specific focus on breast cancer.

To identify breast cancer clusters in the UK and their possible links to environmental pollution.

To raise awareness, stimulate discussion and participation.

To build and develop an information resource, and data base.

To generate a grassroots network of individuals, organisations and groups with a common goal.

Background to project

There were 80,000 signatories to the 1995 WEN petition calling for a greater emphasis on prevention of breast cancer. Some signatories expressed a desire to become involved in positive action to draw public and government attention to the urgency of the need to address breast cancer prevention in the UK. These women formed the network from which the project idea grew.

Project design

The project was designed to collect and collate information and perceptions regarding the quality and health impacts of work, home and community environments of each participant, by means of questionnaires and maps.

WEN invited participants to be the researchers and the creators of maps, thus acknowledging the essential value of their vested interest, skills, knowledge and experience to the process.

A 32 page project guide, which (including a 12 page questionnaire) was widely publicised and distributed; 26 workshops were held in various locations in England Scotland and Wales to further inform and assist the 252 people who were able to attend.

The bringing together of the various strands of the information gathering process produced a dynamic and 'living' picture of breast cancer incidence in the UK and possible factors affecting it. We have used this template to define the future direction and parameters of the project.

Participants

The project attracted the attention and involvement of hundreds of women with and without breast cancer. Many had not been active in environmental issues before. Most of the 148 organisations that responded to the project encouraged their members to participate via articles and publicity in newsletters. The strongest support for the project came from members of Unison (the largest public sector union in UK) and The Inner Wheel Club.

The higher than average 25% return rate for questionnaires is testament both to the solid reputation of WEN, and to the level of public concern regarding the increasing incidence of breast cancer in the UK.

The words and drawings of the women who took part in this project speak with a power which can only begin to be captured by the examples incorporated in the full report.

The total number of respondents at the close of the project was 1000 ?, ranging in ages from early 20s to late 80s. The majority were white English, and almost all were female; 3 males responded. 250 of the 545 respondents whose maps and questionnaires form the basis of the report had experienced breast cancer. Sixteen had other forms of cancer.

One participant wrote:

"I am of deep 'green' philosophy and lifestyle. I have been on a low fat anti-cancer diet since my mother died 15 years ago (of colon cancer). I am vegetarian, non-smoker - if I can get breast cancer anyone can therefore I would like to think that this information [given in the questionnaire] is helpful in finding ways to prevent it".

Summary of project findings

The project identified a large number of breast cancer clusters, a significant number of breast cancer 'hot spots' and many areas of high incidence of breast cancer throughout the UK. See front and back covers.

Analysis of 545 questionnaires, 250?maps and 26 workshops showed that: 54% of participants were concerned about the high incidence of breast cancer, general cancers, asthma and other allergic illnesses.

44% of participants were concerned about environment and health effects of agricultural and industrial chemicals and emissions. This concern was particularly emphasized in relation to crop spraying, pesticide usage and contamination of air, food and water supplies.

34% of participants were worried about the increase in health problems including asthma, hay fever and other illnesses that may possibly be linked to environmental pollution. This was expressed especially in connection with air pollution from traffic and industry.

• Best thing in personal environment - access to countryside.
• Worst things about personal environment - air pollution and road traffic.
• Less than half the respondents who lived in areas where crops were grown knew whether crops were sprayed.
• 90 recorded exposure to pesticides ranging from sheep dip to woodworm, lice and flea treatments.
• Air pollution emerged as the primary environmental concern, yet 272 respondents did not know whether their Local Authority had an air quality monitoring system.
• Both air and water quality were perceived as better in the home than in the workplace.
• Inadequate to non-existent health and safety standards were reported in many work situations.
• 161 respondents, representing voluntary, public and private sectors, recorded 298 workplace hazards that affected their health. Grouped in order of value these were indoor air pollution (chemicals, cigarette smoke, electrical emissions from office equipment etc); regular exposure to sources of EMFs and radiation (VDUs); outdoor air pollution from nearby road traffic; poor ventilation; stress; regular exposure to occupational and structural products (asbestos); poor lighting.
• Living near agricultural and industrial sites was perceived by most as linked to poor health outcomes.
• 31 kinds of health effects, from skin rashes to premature births, were considered to be linked to environmental contamination.
• Radiation, outdoor air pollution and agricultural chemicals were seen as the main sources of environmental contamination linked to health concerns and illness.
• Commonest of 28 health problems experienced in past 5 years were headaches, stress, depression, anxiety, asthma, hayfever, constipation and diarrhoea.
• Three most commonly occurring breast health problems were cysts, mastitis and episodic pain.
• A significant number of respondents with breast cancer recorded acute to chronic levels of stress, anxiety, insomnia and depression.
• 311 different factors were suggested as contributing to or causing their breast cancer by 169 respondents. Grouped in order of value these were environmental pollution including agri-chemicals and pesticides; stress; genetic; the pill; HRT; injury; use of/exposure to chemicals.
• More than half the total respondents knew at least one person with breast cancer.
• Many respondents expressed strong feelings about the government's lack of action and industry's lack of compassion with regard to public health.
• Main ongoing concerns overall respondents were high rate of breast cancer incidence and outdoor air pollution.

Recommendations

The World Health Organisation (WHO) recently reported that breast cancer had become the most common cancer in women throughout the world. The urgency needed in addressing this growing problem is obvious in the UK, where 635 new cases of breast cancer are diagnosed and 240 women die of the disease every week. WEN demands that more emphasis be placed on prevention of breast cancer.

The following recommendations are based on the analysis of the project questionnaire, and information arising from participants' maps and project workshops.

WEN calls upon the Government to:

• Make women's and children's health the prime indicator of the state of the environment.
• Acknowledge the right of women and their communities to participate as equal and active partners at every level of decision making about local pollution and health-related problems, including setting of research agendas, implementation of recommendations, enforcement and evaluation of solutions.
• Establish mechanisms for improved collaboration between statutory and voluntary bodies (e.g. Department of Health; Department of Environment, Transport and the Regions; Health and Safety Executive; Local Government) in order to effectively address environmental factors linked to breast cancer and women's health. Such collaborative work needs to be done in conjunction with NGOs, government and community groups.
• Commitment of a proportion of annual health spending to a comprehensive programme for primary breast cancer prevention.
• Follow the lead of progressive policies from other European countries on the control and restriction of all endocrine-disrupting substances and implement the Precautionary Principle in connection with all substances, processes and pollutants suspected of impacting adversely on the health of the population.

Research

WEN calls for:

• Acknowledgement of the relevance of women's experienced based evidence on possible links between adverse health effects and environmental pollutants; and commitment to the use of this evidence to initiate official research programmes.
• The planning of a national breast cancer research agenda to be undertaken by governments in consultation with health professionals, patient-user groups, voluntary sector organisations etc.
• Analysis of Health Authority data on breast cancer incidence and prevalence by locality.
• Review of all chemically based pollutants suspected of having the potential to cause breast cancer, and publication of results in freely available and easily accessible forms for the public.
• Synergistic effects on human health of minute amounts of chemicals, pollutants and radiation to be an intrinsic part of research.

Workplace

WEN calls for:

• Employers should be obliged to keep better long-term records of occupational ill health.
• Every worker should have a health file, extending over the whole period of his/her working life, in order to assess possible long-term health effects of hazardous workplaces.
• More research is needed into effects on workers' health from exposure to multiple combinations of pollutants in the workplace. This is especially important for women who can suffer "double jeopardy" from exposure both at home and at work.

WEN will continue to work toward the achievement of these recommendations.

Precautionary principle

A principle which "argues that, in order to protect the environment, prudent social policies must precede absolute scientific proof that any particular chemical or intervention does harm. This approach has developed from our inability to predict the future. In the past, our traditional 'wait and see' attitude has led to irreversible damage to the environment. Many international authorities accept the precautionary principle and it has already been used to preempt or limit environmental damage". Dr Cathy Read in 'Preventing Breast Cancer The Politics of an Epidemic'.

IT IS WEN's VIEW THAT THE PRECAUTIONARY PRINCIPLE SHOULD EQUALLY BE APPLIED TO PROTECT OUR HEALTH.

Long term goal

WEN's long term goal is to campaign for more focus to be put on the prevention of breast cancer and other environmentally linked health effects felt by women.

WEN's health team will continue to work towards this goal in a second stage of the project by:

• Making contact with women and providing opportunities and forums for them to voice their concerns.
• Utilizing breast cancer as the platform/vehicle to investigate the wider implications of the environment and our health.
• To create a democratic process that exists outside the confines of the present bureaucratic systems and treatment-led health care.
• To establish the links between Environment and Health and the possible solutions, political interventions and research directions required.
• To gain universal acceptance of the precautionary approach to environmental factors affecting the health of individuals and commnunities by transferring ecological principles to human health.
• Project is a model/pilot that needs to be built upon; could be developed across other health areas; link to long term goal.
• What we have learnt from testing out a new model - say what we have learned, pass on to others etc.
• Future funding initiatives to further develop.

NOTE: We apologize for absence of Northern Ireland on our UK map. The computer mapping programme we used was unable to include Northern Ireland with its map of UK.

What you can do

• Perhaps by joining a local WEN group which has come together as a result of the project to research, explore, map, act upon environmental concerns related to breast cancer incidence or other health outcomes in your area. EG - Group of participants in Southampton area meet regularly to follow up members concerns about air and water quality in greater detail, with a view to improving standards in their environment.
• By acting as our local contact person for exchanging information via a regular newsletter, communicating with others interested in follow up work related to the project such as local research and mapping or whatever is deemed most essential regarding environment, breast cancer and health by participants in your area. EG - At an end-of-project workshop held in Wales in May, we found that the person who'd organised the venue and publicity for us was keen to continue as a WEN link person in her part of Wales, for the continuing life of the project. We are able to provide her with financial, material and information support while she builds local networks and keeps us informed about local follow up work to the project.
• Perhaps you would like to locate others in your area who participated in the project with a view to finding a common concern on which you might focus as a group.
• Perhaps you will want to know what happens next to the unique project that you played a part in, and how effective the project will be in setting 'prevention' high on the breast cancer agenda in the UK. WEN members are kept informed of progress in the quarterly newsletters they receive, so please join to stay informed.
• Perhaps in a way we haven't even thought of! We are open to ideas so please let us know.

The following project publications are available from WEN, 87 Worship Street London, EC2A 2BE

"Putting Breast Cancer on the Map" project pack, please send an A4 (8"x12") size, 66p SAE

Executive Summary of project report, please send an A4 (8"x12") size, 39p SAE

The Putting Breast Cancer on the Map Project Report please send £16 (includes.p&p in the UK) or £18.50 for places outside the UK. Please make cheques payable to Health Project.

Project team

Project Coordinator: Helen Lynn
Administrators: Adama Sesay & Liz Skan
Local Groups Coordinator: Cathy Nugent
Board Representatives: Emma Craig & Vicki Carroll
Volunteers: Di Ward, Jackie Chandler, Christine Knight, Marisola, Ada, Dee Barker and friend, Mary Cox, Astra Blaug, Sue Lumsden, Alison Booth, Hannah Coleman, Cristina Garcia Longoria
Steering Group: Clare Dimmer, Marie Nally, Di Ward and team members.
Report Production Group: Helen Lynn, Laura Potts, Liz Skan, Clare Dimmer, Cathy Nugent, Di Ward.
Editing Group: Ann Link, Vicki Carroll
Consultants: Chris Grundy (GIS mapping) and Christoper M. Bergen (techno crises)

The Women's Environmental Network, P O Box 30626 London, E1 1TZ
Tel: 020 7481 9004 Fax: 020 7481 9144 Email: health@wen.org.uk
Website: www.wen.org.uk Registered Charity number 1010397