Lived Experience Focus Groups

In spring 2023 the Review commissioned six support and advocacy organisations to facilitate a series of focus groups with former, current and potential future service users to understand their experiences and to capture their thoughts and ideas about what they need and want from services and how they would want to access them.

The Review worked through host organisations because they were able to provide a safe environment in which participants felt comfortable and confident to speak freely and could be supported before, during and after the sessions.

The brief was:

  • To facilitate between 15 – 20 focus group sessions (delivered by a range of organisations)
  • The focus group participants should be people with lived experience, i.e., those who identify as transgender, non-binary, gender fluid and/or young people who have been through a period of gender questioning, ideally, but not exclusively, people who have used NHS gender services, or are likely to use those services in the future.
  • Each focus group should engage with between 10 – 15 people, in the age range of 14 – 30 years. There will be some topics where parental / family perspectives may be helpful, but the focus is predominantly on the young people themselves.
  • Each discussion session should last for a minimum of 1 hour.

Host Organisations were asked to:

  • Work with the Review team to agree the format, focus and key questions for the sessions.
  • Recruit appropriate participants, in line with the criteria set out above.
  • Provide support to participants before, during and after the sessions as required.
  • Facilitate discussions in an open and non-directive way.
  • Compile and submit to the Cass Review team an accurate and comprehensive written report of the outputs from each focus group, including an anonymised profile of participants – age, expressed gender identity, whether they have accessed GIDs, region that they are resident.
  • Attend a meeting with the Cass Review team to discuss learning from the sessions.

The Review team set the questions explored through the group sessions. While the support organisations could pose additional questions, it was expected that the topics/questions put forward by the Review team would remain the main focus of discussion.

An information sheet was provided to participants ahead of their involvement.

The Review commissioned 18 focus groups from six organisations, two of these organisations also conducted surveys and some held 1:1 conversations.

When the focus groups had been delivered, the Review met with the hosting organisations to discuss the learning and agree key themes and messages that were common across the different groups. Feedback to the questions relating to the delivery model of the new services, for example clinic environment, name and location) was passed (with the agreement of the hosting organisations) to the NHS provider organisations to inform the services while they were in development.

Insights from the focus groups were presented at a roundtable meeting hosted by the Review to discuss how the learning informed the organisation and delivery of future services. Participants in the roundtable included some of the young people who had taken part in the focus groups, youth workers who had facilitated the discussions, policy leads from support and advocacy groups and clinicians from the GIDS and the new gender services.