The National Hereditary Breast Cancer Helpline was founded in 1996 by Wendy Watson, at a time when little or nothing was generally known about Hereditary Breast Cancer. How it all began:
Wendy held the first Hereditary Breast Cancer Awareness week to mark the launch of the helpline. This was warmly received by the whole genetic community and supported by the late Princess Diana (click the letter to the right to read). Two genes had at that time been found which, if faulty, conferred around an 80-90% breast cancer risk.
The main aim of the helpline was to ensure that those worried about their family history had access to full information on all the options currently available, referrals where appropriate, and full peer support for whatever option was chosen. Most importantly that those affected had the opportunity to make informed choices. It is also an important role of the helpline to reassure those worrying unnecessarily. To that end the Helpline has been enormously successful, given the feedback over this past 19 years.
From the outset one of the main problems was inequity of service. The Helpline was instrumental in bringing the ‘Management of women at risk’ to the attention of the DoH and in 2006 guidelines were developed and announced by NICE, with representation and approval from the Helpline. The Helpline has also been involved with the current moratorium on ‘Genetic testing and insurance’, and was also active in alerting the government to the worrying situation of the gene patent, which, if allowed to go forward, would have made genetic testing prohibitively expensive for the NHS, thus costing lives.
The Helpline is manned as near as possible 24 hours per day, every day, although an answering service is always available. To date many thousands of calls have been taken worldwide and Wendy has given numerous talks internationally. In 2001 Wendy was called upon to help advise on the launch of a similar incentive in the USA.