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Service user and carer Involvement Group (EXTEND-InG)

I want to give back and use my experience of psychosis and recovery through early intervention in a positive way - Service user
I have found it empowering to be back involved and feeling useful - Service user

The EXTEND Involvement Group (EXTEND-InG) is composed of 9 individuals with personal experience of psychosis care. The group is chaired by Veenu Gupta and David Shiers, two members of the study team with their own lived experience. The other 7 members were recruited to offer their insights and perspectives from a range of relevant socioeconomic, demographic and clinical backgrounds. This includes service users, carers, individuals from different parts of the England, and experiences at different points along the early intervention referral/discharge pathway.

Active Public and Patient Involvement (PPI) is essential to ensure the EXTEND research programme stays focused on the things that matter most to service users and their caregivers. The EXTEND-InG members will play a vital role in shaping the research programme, meeting regularly throughout the study to:

  • Give feedback on documents that provide service-users with information about the data that will be used in the study and how to opt-out should they wish to.
  • Contribute to the development of material that we will use in the study to collect information on the views of EI service-users and carers.
  • Work with the wider team to identify key variables relating to EI care that will be central to the EXTEND research study.
  • Participate in meetings with the wider community of people and families with experience of EI services that we will hold during the study to share our research plans and findings.
  • Review and provide feedback on emerging research findings from the study and provide a ‘lived experience’ commentary to all study outputs.

The quotes on this page are taken from responses by members of the EXTEND service user and carer Involvement Group (EXTEND-InG) to specific questions. To read the full versions of these responses please see this blog post.