UK government NHS Breast Screening Programme
United Kingdom

For years independent experts have requested transparency with the client population for breast cancer screening on the issue of overtreatment, but the National Health Service Breast Screening Programme have prevaricated. Everyone wants people with breast cancer to get prompt appropriate treatment; equally, nobody wants people who do not have cancer to be treated as if they do.

If the treatment for breast cancer were a pill with no side effects, it would matter less. But approximately 7000 women per year in the UK receive some or all of surgery, radiotherapy, chemotherapy and adjuvant drug therapy they do not need. They pay a high price for nothing: their life is not saved because it is not threatened.

It seems reasonable that if cancers can be found early, lives can be saved. But women are not told before screening what practitioners know, that
- they may find themselves having to accept life-changing treatment for lesions which may never harm them
- cancerous cell changes are not uncommon and many don’t progress
- screening identifies many minor lesions over and above those that would go on to endanger life but pathologists do not yet know enough about cancer to tell whose abnormalities will progress
- hence all are treated just in case
- this applies both to noninvasive (in situ) and invasive cancers. Some invasive tumours remain static or regress. Not all cancers will kill. This is recognized with cervical and prostate cancers
- screening predominantly identifies slow-growing tumours, treatable even if found later, artificially inflating survival statistics
- sometimes surgery is done to look for cancer not detected by other tests.

The numbers involved in overtreatment are significant. Some would wish to avoid it; it is too late after receiving an equivocal diagnosis to find out.

Independent experts dispute the NHSBSP’s statistics. The NHSBSP quote their own study that for every overtreated person, two other lives are saved. Some people may prefer to avoid even this risk for the sake of a very small chance of benefit; it is their right. Many independent estimates say 10 are overtreated for 1 death prevented in 2000 women screened over 10 years. The difference is huge, significant and material to the decision whether to be screened. Women have a right to know.

Evidence that screening saves lives is lacking. Many screen-diagnosed women are encouraged to believe and allowed to go on believing what is not true, that screening saved their lives.

The NHSBSP has said that they do not want to explain overtreatment for fear of deterring women from screening. That is paternalism. It is wrong to withhold truth about risk of harm in order to secure uptake of a preventive health programme. Women may still want screening when they know the risks, but it is every woman’s right to decide for herself on correct information whether she wants to take the significant risk of overtreatment for the small chance of benefit. My request is simply for accurate relevant information.

We the undersigned, call on the NHSBSP to adopt a policy of transparency with its clientèle regarding the risks of harm and the chances of benefit, if any, in being screened for breast cancer.

• We request that information leaflets be designed with the aim of facilitating decision-making by clients and not of increasing uptake. These two objectives are in conflict. The latter involves distorting the information, since the truth about screening may deter some individuals from being screened. It is their right to decide on correct information, and rational and safe not to be screened if they so wish.

• We request that all literature, particularly information leaflets accompanying unsolicited appointments for screening, be open and honest about what is and is not known.

• We request that the NHSBSP in their public information leaflets:
- indicate the nature and limitations of screening a population for a disease
- give the range of estimates of benefit and harm presently made by independent experts, and indicate that there is uncertainty and that there are differences of view amongst experts
- name and explain the issues of overdiagnosis and overtreatment
- refer to alternative reliable sources of balanced information for clients to find out more, including reference to Sense About Science/Making Sense of Screening and to the Nordic Cochrane Centre review of breast screening.

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The Straight Talk about Screening petition to UK government NHS Breast Screening Programme was written by Miriam Pryke and is in the category Health at GoPetition.