Update on our work regarding NWJCC’s decision to pause gender-affirming surgery

Since the pause was announced, we have met twice with the NWJCC, submitted a representation, and continued to raise directly with decision-makers the experiences and concerns shared with us by people affected. 

Through the representation, we have formally requested information and assurances regarding: 

• the decision-making process that led to the pause; 

• the impact on people whose referrals or planned surgeries have been affected; 

• how those impacts have been assessed and are continuing to be monitored; 

• the arrangements being put in place to enable the service to resume; and 

• the support, information and communication being provided to those affected. 

We know that this situation continues to cause uncertainty and distress for many people. Since our original statement, we have heard from a significant number of individuals who have shared their experiences with us. 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, all of whom have been directly affected by this pause. We have, and will continue to, share those experiences and concerns with the NWJCC and Welsh Gender Service. 

We are also aware of the concerns raised by community and representative organisations and of calls for further scrutiny of the decision.  

Llais is the independent citizen voice body for health and social care in Wales. Our role is to ensure that people's views, experiences and concerns are heard, understood and properly considered by decision-makers. 

When changes affect NHS services, we seek to understand how decisions have been made, how people have been involved, and how organisations are responding to the impact on those affected. Where we believe that people's views have not been adequately considered, or that engagement has been insufficient, or the correct process has not been followed, we have a range of options available to us to make sure those concerns are properly raised and considered. 

At the time of publishing this update, we have been given some answers to our questions verbally, including confirmation from the NWJCC that it is committed to keeping people informed, and that patients should receive a letter in the coming weeks that confirms next steps for them. 

But we are still waiting for detailed responses to the questions and issues we have raised through our written representation to the NWJCC. Obtaining and considering that information remains a priority, as it will help us understand the factors that the committee considered in reaching its decision to pause services, including the potential impact on people, the arrangements being put in place, and how the impact on affected individuals is being assessed and managed. 

It is only once we have received and considered those responses that we will be able to determine what action may be necessary to ensure people's experiences, concerns and interests are properly represented. 

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.