Llais seeks further answers on behalf of people affected by gender-affirming surgery pause

Since the pause was announced, we have continued to hear from people affected by the decision. We have heard from people at different stages of the surgical pathway, including individuals who had been waiting for surgery for a considerable period of time.

Many people have told us about the uncertainty they are experiencing, concerns about what happens next, and the need for clearer information about the review process and future access to surgery.

As the independent citizen voice body for health and social care in Wales, our role is not to determine whether a clinical decision was right or wrong. Our role is to ensure people's views, experiences and concerns are heard, and to seek information that helps people understand decisions that affect their care and treatment.

At the Board meeting, we raised a number of issues directly on behalf of people who have contacted us. The NWJCC is yet to fully answer some of our questions and we are now following these up with the committee.

People have told us that the support available since the pause was introduced has not always felt sufficient to address the uncertainty and distress they are experiencing. We asked how the NWJCC will assure itself that people are receiving the support they need.

People also told us they were struggling to understand the review process and when they could expect further information. So we asked how communication with affected individuals will be improved and suggested that regular updates may help reduce uncertainty while the review is taking place.

We also raised concerns from people who told us they do not understand what needs to happen before referrals and surgeries can resume, as well as concerns about how fairness will be ensured when services restart. In addition, we asked questions about the scope of the review and why it is focused on current referrals and waiting lists.

In response, the NWJCC told the Board that three independent clinical reviewers have now been appointed and that the terms of reference for the review have been agreed. We understand these are expected to be published shortly.

We were also told that the review will begin with the group of patients whose surgeries were most immediately affected by the pause. Importantly, the Board told us that where reviewers determine a person can return to the surgical pathway, that can happen immediately and does not depend on the wider review being completed.

The NWJCC reiterated that it remains committed to providing gender-affirming surgery services in Wales, but said the pause was introduced following clinical advice and concerns relating to patient safety. We were also told that support continues to be available through the Welsh Gender Service and that letters have now been issued to affected patients.

Following the Board meeting, the NWJCC published a further update setting out additional information about the review process.

In that update, the committee said that it intends to begin by reviewing patients whose surgeries were due to take place between August and December 2026, in the order of their planned surgery dates. It also stated that it is currently working towards completing this first stage of the review by the end of December 2026.

The update further stated that patients who can proceed after an individual review will not need to wait until the wider review has finished before their surgery arrangements can progress. The NWJCC also said it has sought confirmation from surgical providers in England that patients able to proceed will be prioritised.

While these updates provide some additional information, we recognise that many people will still have questions and concerns.

People have consistently told us that uncertainty and a lack of clear information have been among the most difficult aspects of this situation. So we are continuing to encourage clear, timely and accessible communication with the people affected as the review progresses.

Many people have also told us they want to understand how decisions will be made, what the pause means for their future care, and what needs to happen before referrals can resume. Many have also told us they want a clearer explanation of why an immediate pause was considered necessary.

We raised these issues directly with the NWJCC Board and will continue to seek answers and assurances on behalf of those affected. Through our ongoing engagement we will continue to seek further information about the impact of the pause on affected individuals, the concerns that led to the decision, how those concerns were assessed, how the impact on people was considered, and the arrangements being put in place as the review progresses.

We would like to thank everyone who has taken the time to share their experiences with us. Their voices are central to our work and continue to inform our engagement with the organisations responsible for this service. We encourage anyone affected who has not yet contacted us to do so, as hearing directly from people remains essential to ensuring their experiences are properly understood and represented.  

Has your care been affected?  

If you have been affected by the pause to gender-affirming surgery referrals or procedures, we want to hear from you.  

You can tell us about your experience by completing our national survey, or by speaking directly with a member of your local Llais team. Whatever you choose, we're here to listen.  

Share your story online or contact your Llais local team to speak to a member of staff. 

The Welsh Gender Service is publishing updates and answers to frequently asked questions on its website, available here.