Lived Experienced Research Ambassador

What is our role?

Our goal is for everyone who uses the Trust’s services to get the chance to take part in research. It is well known that service users benefit enormously from research, and we are lucky to be building on solid foundations at the Trust since it is the top mental health Trust in England for the number service users involved in research! However, there is still patchy participation in research across the Trust and we are committed to improving access and understanding the barriers to underrepresented groups.

Saskia Evans Perks, Lived Experience Research Ambassador Saskia.perks@slam.nhs.uk 

Some of the reasons to contact us

If you have lived experience – you are our community! I want to speak with as many of you as possible to raise awareness of research opportunities and to understand the barriers that might stop you participating in research.

If you are a clinician – you are often the conduit for offering research to service users, so please reach out if you’d like to discuss the benefits of offering research to service users or to help me understand what would help you make this offer routinely.

If you are a clinical researcher – you provide the service that we are promoting. I want to work with you to help you reach and meet the needs of diverse service users across the Trust. Please get in touch if you want to know more about the service user networks that exist across the Trust and its community.

If you are a Research Champion – you are our partners in promoting the benefits and importance of research with clinicians. I want to support the growth of the research champion network and represent the service user voice as a motivator for your work. Let me know how I can help!

Research club

The Research Club is a collaboration between the SLaM recovery college and Lived Experience Research Ambassadors. It was developed to ensure that research at the Trust and the IoPPN, King's College London is discussed with service users, staff, and all at Trust. We aim to ensure that our research is accessible to our service users.

The sessions involve researchers talking about their findings and how the research has shed light on how improve their current work and treatments as clinicians. A participant of the study often attends and explains what it was like to take part in the research study.

Email saskia.perks@slam.nhs.uk for more information.

Enrol via the Recovery College website: https://www.slamrecoverycollege.co.uk/enrol.html

The online meeting is held monthly. The upcoming dates for 2024 are:

Thursday 28 November, 2-3pm, Online 

Title: Involving neurodivergent youth in the translational science of ADHD and autism

Speakers: Dr Susie Chandler (Research Fellow/Programme Manager, King's College London) and Dr Luke Harvey-Nguyen (Foundation Doctor, NHS Wales; Youth Researcher Panel Member on RE-STAR, King's College London)

About the speakers: 

Susie has over 20 years’ experience in autism research. Her research interests include the developmental trajectories of autistic individuals, and the presentation and impact of co-occurring mental health conditions in this group. She is currently managing the UKRI MRC-funded programme, 'Regulating Emotions - Strengthening Adolescence Resilience'. This programme aims to find new ways to reduce depression risk in autistic young people and those with ADHD.

Luke is a Co-Researcher/Youth Panel Member on the RE-STAR project. Diagnosed with ADHD as an adult in 2020. Also, a Junior Doctor in the north Wales NHS and keen endurance athlete!

Session summary: 

There are increasing calls for neurodivergent peoples’ involvement in research into neurodevelopmental conditions. So far, this has tended to be achieved through membership of external patient and public involvement (PPI) panels, with panel members typically contributing in an 'advisory' capacity.

The Regulating Emotions – Strengthening Adolescent Resilience (RE-STAR) programme has developed a participatory model of translational research that places young people with diagnoses of attention-deficit hyperactivity disorder (ADHD) and autism at the very heart of the research team so that they can contribute to shaping and delivering its research plan. This talk will describe the impact this has had on the research and those involved, as well as the challenges (and solutions) faced along the way.

Service User Research Advisory Group

Service User Research Advisory Group (SURAG) aims to better understand the needs of the people who take part in research. It is an open space for service users to talk about their experiences of being research participants. It ensures that services users, as experts by experience, can advise on the research, engagement and dissemination activities. Attendees are encouraged to reflect on personal experience to ensure their voices are heard and can shape the design and implementation of the research locally.

 The meeting is held monthly on MS Teams 2pm - 3pm and is open to all Trust service users and staff with lived experience of menta health difficulties. To join, email: saskia.perks@slam.nhs.uk

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