The Launchpad Programme: Building Research Through Lived Experience

Helen: My mother was first diagnosed with schizophrenia in her 30s, when I was a child, though there were clear signs of her condition before that. The admissions to hospital that followed diagnosis were frequent, revolving door, and always against her will.  There were periods of stability on medication followed by relapse once she stopped. It was difficult for us as a family, and I focused on learning about schizophrenia to distract from the challenges that came with the condition. In 2012, my mother was diagnosed with dementia, and I spent the next eleven years as her carer. Dementia transformed her from a suspicious, withdrawn person into someone relatively sociable in her care home. For six years, despite everything dementia brought with it and some loss of dignity, for the first time we shared fun and real connection.

This experience began a deeper consideration of what these two diagnoses mean for patients and carers, and I wondered why the conditions were treated separately rather than together. As I became more involved in health and social care research, I began to ask whether there was a research project in it. With support from HIOW Healthcare NHS Foundation Trust and others, I have started that process. There are 500 people like my mother in Hampshire and Isle of Wight.

Blue and I met at a Research Leaders Training session and at a number of events and conferences. I described my idea and suggested that a Patient and Carers Group could form the basis of an application. Blue’s focus on psychosis and our connection on patient involvement,  gave us the tools to form a Launchpad team. We have just begun the process alongside our professional mentors Lizi Graves, MARC, Jeni Malpass and Leire Ambrosio, raising awareness through groups, newsletters, surgeries and clinics to attract patients and carers to our group.

Blue: The Launchpad programme has provided a valuable opportunity to collaborate meaningfully with a lived experience peer, something I have long been passionate about developing further in my work. Through this initiative, Helen and I were able to come together and apply for the team award, building on our shared commitment to improving care for people affected by psychosis. Our interests naturally align, with Helen bringing important insight into the intersection between psychosis and dementia, enriching our perspective and approach.

Collaboration, particularly with those who bring lived experience, is essential to ensuring that research and service development remain grounded, relevant, and impactful. The Launchpad has not only facilitated this partnership but has also created space for us to grow as a team, combining clinical and experiential knowledge in a meaningful way.

The support from the Academy has been instrumental throughout my research journey, and the Launchpad continues this by enabling us to train, gain experience, collaborate, and share our work. Ultimately, it contributes to our collective goal of improving care and outcomes for the people we serve.

If you are interested in joining our Patient and Carers Group or would like more information, please contact

e: helen.sloan9@nhs.net 

t:07973 919210

Helen wrote a blog on her experience of caring for her mother:

https://bit.ly/47OM5o6 or https://rdn.nihr.ac.uk/news/new-blog-series-caring-someone-dual-diagnosis-dementia-and-paranoid-schizophrenia