Request for feedback: Proposed policy for gonadal & genital surgery for infants and children with DSD

Nov 10, 2020

NHS England has proposed a new policy around gonadal and genital surgery in infants and children with DSD (difference in sex development). A key part of the proposed policy is that ‘surgery will not be available as a routine treatment option…. until the individual concerned is able to give fully informed consent’ unless ‘there is requirement for emergency surgery or for gonadal surgery when there is a clinically confirmed significant cancer risk’.

As you’re no doubt aware, CAH is one of the most common DSD conditions and therefore this new policy (preventing any surgery in childhood) will affect more people with CAH  than those with any other DSD condition.

The Group feels that it is vital that as much feedback as possible is shared with NHS England about this proposed policy, so details about how to do this are below.

If you’re a member of the support group and have agreed to receive emails from us, you will have all the details to feed back to NHS England about this policy. 

If you’re either not a member, or haven’t received an email, please contact either Sue, Sallyann, Kaz or Jess via the Meet the Team page and they will will forward the details onto you.

The deadline for feedback is 3rd December 2020.

Recent Blog Posts

A selection of articles from around the world in 2025

A selection of articles from around the world in 2025

Here’s a selection of three articles from around the world in 2025 about CAH. They cover treatment methods and long term outcomes for people with CAH - making for interesting reading for anyone interested in or affected by CAH. These articles are not a recommendation...

COVID-19 Information & Guidance

COVID-19 Information & Guidance

As new guidance and information becomes available, we will do our best to link to it below - please check here for updates. If you contract COVID-19, remember to adhere to sick-day rules. Always seek guidance from your GP, endocrinologist or other appropriate medical...

Annual General Meeting – 2nd November, 3pm UK time in Oxford

Annual General Meeting – 2nd November, 3pm UK time in Oxford

The CAH Support Group is pleased to announce its 7th Annual General Meeting (AGM). It will be held in person at The Lighthouse, Oxford on Sunday 2nd November 2025 at 3pm UK time. A virtual Teams link is available on request. If you'd like to see the agenda and/or...

The CAH Support Group is affiliated with Society for Endocrinology, an organisation that supports clinicians, scientists and nurses who work with hormones throughout their careers. They engage policy-makers, journalists, patients and the public with hormone science to encourage informed health decisions, and to demonstrate the value of endocrinology to the wider world and also maintains a public information website, You and Your Hormones.

All content on this website (livingwithcah.com) is copyright the CAH Support Group unless otherwise stated.

The CAH Support Group cannot be held responsible for the content provided by any external links unless stated.

Cookie Policy | Privacy Policy | Disclaimer | Forum & Social Media Rules | Contact Us