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

What you should know about COVID-19 – updated 10th August 2021

What you should know about COVID-19 – updated 10th August 2021

Guidance from other organizations is continually being issued and we'll do our best to link to them below - please keep checking back here for more updates. UPDATE 10th August 2021 Article: “ChAdOx1 SARS‐CoV‐2 vaccination: A putative precipitant of adrenal crises”...

European Hormone Day – 24th April 2024 – Because Hormones Matter

European Hormone Day – 24th April 2024 – Because Hormones Matter

European Hormone Day returns for a third time on Wednesday, 24 April, uniting the endocrine community across Europe and beyond to raise awareness of the vital role of hormones in health and disease – #BecauseHormonesMatter. Many people have an idea of what hormones...

Genomics England – The Generation Study – CAH included

Genomics England – The Generation Study – CAH included

The Generation Study is being carried out by Genomics England in partnership with the NHS. It is exploring the possible use of genome sequencing in newborn babies to identify a wide range of rare genetic conditions alongside the routine newborn blood spot screening....

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