12th February 2020 Blog

Commissioning research, creating a legacy

Lived experience •

Dr. Fiona Riddoch

This is a big moment for us. We, at Words That Carry On, have just launched our first request for research proposals. What was an idea some 18 months ago, is now becoming a reality.

In April 2018, friends and family of Lindsay Riddoch launched Words That Carry On, in Lindsay’s memory.

Lindsay was a young poet and mental health activist. She was passionate about mental health justice and putting those with lived experience at the heart of research and service provision.

Her family and friends are hugely proud of her. Not just for what she achieved in her life as a scholar, poet and young professional but for the person she was: a force for justice who emanated strength, courage and determination.

This was particularly apparent in how she dealt with her own mental health challenges. Lindsay had a diagnosis of personality disorder.

As a legacy to Lindsay’s work, our aim is to fundraise for much-needed mental health research on personality disorder and/or autism. Thanks to our supporters’ incredible help we are confident we can raise £100,000 by the end of this year.

These funds will be entirely invested in research and dissemination, so that what we learn can make tangible differences to policy, practice and people’s lives.

We have taken care to make sure that the voices of people with lived experience of personality disorder, autism and complex mental health needs are at the heart of all our activities.

In early 2019, we asked people with relevant lived experience and health care professionals to help us define and prioritise where we should focus our research. Responses were collected through a survey.

People identified the intersection between the two clinical diagnosis terms personality disorder and autism as a key priority. A workshop with the same range of participants was held in September 2019. This also highlighted the need for improved training for staff working with people with a diagnosis of personality disorder and/or autism.

Image taken from survey report showing topics ranked in order of priority

Of note, we are deeply grateful to the McPin Foundation for their help throughout this process. They host Words that Carry On and have lent us their expertise and experience of carrying out mental health research that involves people with lived experience.

Finally, based on what people in this community have told us that matters, we are now looking for research proposals, of up to a total of £80,000, that explore the intersection between the two clinical diagnoses personality disorder and/or autism. We will ringfence a further £20,000 for proposals on how to disseminate the research findings.

Our key research proposal requirements are:

  • People with lived experience must play a key role in both the design and delivery of this research.
  • Applicant teams must contain researchers with clear knowledge of both the clinical diagnoses of personality disorder and autism.
  • We particularly encourage innovative approaches: using big data, technology, translating approaches from other disciplines.

Please spread the word. Support the fund. Encourage researchers to apply.

We all know that there is more to be done to fundamentally understand poor mental health. Words That Carry On want to support researchers to start deepening our existing knowledge through robust research, so people with complex mental health needs can live happy, healthy lives.

Dr. Fiona Riddoch is Lindsay’s mother and Words That Carry On co-founder

Visit the Words That Carry On website here.

Read the Words That Carry on survey report here.

Download the invitation to tender here.