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Heading Patient Satisfaction Survey.
We are undertaking a two part survey into patient satisfaction with treatment and referrals in order to ascertain inequity across the country, and hopefully help improve services for all. The second part is for those who have undergone risk reducing surgery. We have included a 'Word Document' for each survey to download, fill in, save and send back to the Helpline at canhelp@btopenworld.com We have also included the printable Adobe version which would need to be downloaded and printed, filled in and returned to the National Hereditary Breast Cancer Helpline, St Annes Cottage, Over Haddon, Derby DE45 1JE. We are happy to send you a stamped addressed envelope to save your postage if you email your address to the above. Many, many thanks for your co-operation here. It will be an invaluable resource. Wendy |
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Welcome to the N.H.B.C Helpline Website, 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 the Helpline 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 (letter). 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 14 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. |
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| Both Wendy and Becky have participated in TV documentaries depicting their stories; ‘The Decision – Living in the shadow’ and ‘My breasts or my life’. We have both of these available on DVD if anyone would like a copy, we are asking for a small fee to cover costs of £7.50. If anyone is interested please send a message ...with your details on facebook to one of our helpers – Gary Knowles. Thanks. | |||||