FOI – 2025-3154 Healthcare of Infants (HTML)

Date received – 28 October 2025 | Date responded – 25 November 2025

Request

I am writing under the Freedom of Information Act (Scotland) 2002 to request the following information held by NHS National Services Scotland:

I would like to request any policies and/or guidelines used in your the healthcare of infants who are intersex/have a difference or disorder of sexual development, or have ambiguous genitalia at birth (such as clitoromegaly, microphallus or other atypicality). If NHS National Services Scotland does not have guidelines or policies relating to the above, please let me know.

Response

I refer to your freedom of information request that we received on 28 October 2025 requesting the following information:

I am writing under the Freedom of Information Act (Scotland) 2002 to request the following information held by NHS National Services Scotland:

I would like to request any policies and/or guidelines used in your the healthcare of infants who are intersex/have a difference or disorder of sexual development, or have ambiguous genitalia at birth (such as clitoromegaly, microphallus or other atypicality). If NHS National Services Scotland does not have guidelines or policies relating to the above, please let me know.

We have now completed the search of our records and can provide you with the following information:

Please find attached FOI – 2025-3154 Appendix 1 - SDSD Neonatal Care Pathway, this is the only live guideline NHS National Services Scotland (NSS) holds in relation to Scottish Differences of Sex Development (SDSD).

You can also find educational video links on the SDSD website, which are publicly available here: Professional Resources – Scottish Differences of Sex Development Network. The website links to several external resources.

Within the website there is an SDSD endorsed booklet available, this is aimed more at patients, but available on the professional resources part of the website here: The-Story-of-Sex-Development. This was developed by dsdfamilies, but SDSD are acknowledged.

Under Section 15 (Duty to provide advice and assistance) of the Freedom of Information Scotland Act, 2002 please note NSS are currently developing a guideline on “bilateral impalpable testes” which is still in the very early stages of review.

I trust you will find the information of assistance and if you require any further information, please do not hesitate to contact us.

If you are unhappy with any aspect of how we have dealt with your request, you can make representations to us asking us to review the handling of your request.

If you require any further information, please contact the Associate Director Governance and Board Services (Board Secretary) within 40 working days of the date of this correspondence.

Contact

Address

If after a review you are still unhappy, you also have the right to apply to the Scottish Information Commissioner, who can be contacted at Kinburn Castle, St Andrews, Fife, KY16 9DS, or via their application form.

National Services Scotland (NSS) is committed to publishing all information released in response to Freedom of Information requests. You can view all FOI responses within our FOI Publications repository.