I apologise unreservedly and express my sincere sympathy to all those affected by exposure to diethylstilbestrol (DES), including those exposed in utero and their families. National Health Service records are held by individual NHS organisations and general practices, and clinicians can record clinically relevant information, including known exposure to DES, in a patient’s own medical record where this is brought to their attention and is relevant to their care.
Women who believe or know that they were exposed to DES in utero may need regular colposcopy, which falls outside the routine screening programme. They should speak to their general practitioner about this, as local arrangements should be made for the follow up of women who have been exposed to DES where clinically indicated.
NHS England has asked Cancer Alliances to cascade existing guidance to clinical networks, including general practitioners and other health professionals who may come into contact with DES-exposed patients, so that appropriate follow-up can be arranged locally where needed.
The Department has commissioned the University of Exeter, through the National Institute for Health and Care Research, to review the latest evidence on the impacts of DES, including its long-term, intergenerational, and psychosocial effects. That work will help inform future decisions on clinical guidance, treatment pathways, and any screening arrangements for people affected by DES.
The Department will continue to work with NHS England and relevant partners to support awareness of the existing guidance for clinicians and patients affected by DES exposure.
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