Request for feedback: Proposed policy for gonadal & genital surgery for infants and children with DSD
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
Webinar: Quality of life and fertility in CAH – 21st November 2026
The European Society for Endocrinology (ESE) is running a free webinar focussing on CAH on 21st November 2026. Hear from patients and clinicians from across Europe as the subjects of health-related quality of life and preserving fertility across the lifespan are...
Supporting Safer Adrenal Crisis Care
The Addison’s Disease Self-Help Group (ADSHG) has launched a national advocacy campaign to improve emergency treatment and patient safety for people at risk of adrenal crisis. The campaign was sparked by the discontinuation of liquid hydrocortisone in the UK, which...
Pituitary Awareness Month (October) – Symptoms in the Spotlight
October is Pituitary Awareness Month. Although not CAH, some of the information from the Pituitary Foundation may be helpful for those living with CAH. Find out more at the Pituitary Foundation's website here. Header image from Pituitary Foundation UK. Recent Blog...