Lived Experience Advisory Forum (LEAF), Sussex Partnership NHS Foundation Trust
Group type: 3. Institution or initiative-specific
Named contact: Ruth Chandler (Service User and Carer Involvement Co-ordinator)
Email address: Research@sussexpartnership.nhs.uk
Telephone: 01273 265896
Sussex Partnership NHS Foundation Trust
Remit of the group
The Lived Experience Advisory Forum (LEAF) is a mixed group of service users and caregivers who support researchers to ensure that patient and public involvement (PPI) and PE is part of the design, delivery and translation of research at Sussex Partnership Foundation Trust. We play an active role in the sponsorship of studies and report to and from the governance meetings in the R and D department.
We make sure that the authentic voices of lived experience inform all of these aspects of research. Our aim is to be a ‘critical friend’ to researchers while taking a robust approach to tokenism
Who can consult the group?
Researchers within Sussex Partnership NHS Foundation Trust
Frequency of meetings
More about the group (optional)
LEAF was established in 2009 as a Design group. A key achievement this year has been the development of a PPI strategy for all our research activities. Individual LEAF members have taken on different reporting and practical responsibilities in the group, ranging from reporting to the governance to revising our terms of reference.
We now hold strategic oversight of several Design and Delivery groups in the following specialist areas:
- Early Intervention Psychosis
- Mood and Anxiety
- Learning Difficulties
We have emergent groups across the wider themes. Each group provides advice to clinicians on the design of research proposals. These groups work closely with the RDS (Research Design Service) by applying for small grants to fund involvement on individual grant applications and provide ongoing PPI support to studies without a PPI budget.
We have promoted a lived experience video for PE activities and embedded involvement in the development of the OCD and Voices clinics.
We have delivered PPI and Peer Researcher training locally and have also been asked to deliver this in other Trusts. We have spoken at local and national conferences about our PPI and PE work and have published a book on recovery for caregivers with the Scottish Recovery Network.
Two LEAF members have gone on to Higher Education.
A research idea around Peer Support suggested by people with learning difficulties has successfully bid for own account funding.