We are contacting you as someone who is registered for one or more of our clinical reference groups (CRGs), or someone who might have an interest in this area.

We would like your feedback on a proposed clinical commissioning policy for gonadal and genital surgery for infants and children with differences in sex development (DSD). This has been developed by NHS England. DSD is also known as variations in sex development or characteristics, intersex or disorders of sex development.

A final decision is yet to be made. However, based on the clinical evidence described in the policy proposition, the proposal is that surgery will not be available as a routine treatment option through commissioning until the individual concerned is able to give fully informed consent. There are exceptions to this, which include where there is requirement for emergency surgery or for gonadal surgery when there is a clinically confirmed significant cancer risk.

As a key stakeholder, we would like to hear your views on the policy proposition before it is considered further by NHS England.

Below is the proposed policy and other supporting documents:

·         Clinical commissioning policy proposition

·         Clinical evidence review

·         Equality and health inequalities impact assessment

·         Stakeholder response form.

What is NHS England asking you to do?

Please look at the proposed policy and give your feedback to the questions in the separate stakeholder response form (link above). You are welcome to respond on behalf of your group or organisation, or as an individual. You may want to consult others as part of your response, or you can forward this email to other stakeholders.

The stakeholder testing is open for 30 days and the last day for feedback is 4 December 2020. You can return your completed stakeholder response form toengland.ncpt@nhs.net.

Once NHS England has reviewed all the stakeholder feedback, a revised policy will be proposed for wider public consultation. You, along with other people will be welcome to comment on the proposal again at that time, before a decision is made.

Thank you very much for your input as a stakeholder in this area.

Other planned work around differences in sex development

In addition to developing the clinical commissioning policy proposition, a working group, which includes clinicians, people with lived experience of DSD and support organisations have been advising on the design of a new service specification.

The development of a new DSD service specification will outline the need for access to psychological and supportive care of parents, children and young people at each developmental stage through to transition to adult services. This will be available for testing with stakeholders in 2021.

Keeping updated

If you have been forwarded this information, or have been identified particularly for this work, but would like to receive future updates directly, please sign up to become a stakeholder of the ‘Specialised Surgery in Children’ clinical reference group via www.england.nhs.uk/commissioning/spec-services/get-involved.

Kind regards,

Specialised commissioning