NEON

Donate a story

What is the NEON Collection?

The NEON Collection consists of over 600 stories from people around the world who have experienced mental health problems and have a sense of recovery from this, in many different ways.  Currently 31 organisations and collections and 27 individuals have contributed, with more collaborations and donations on the way.

How are the stories being used?

The stories are being used in online trials by the NEON study to investigate whether viewing, hearing and reading stories of other people’s experiences helps people with their own mental health-related distress and recovery.  The Collection can only be accessed by people who have registered to be participants in the trials, and will never appear openly available online.

All stories are used with permission from the narrators.  You can find further information about the NEON Collection here and the trials here.

Why donate my story?

“I hope that by sharing my story with NEON, I can help others find the strength to push on with their recovery. By sharing my story, I have changed my mind set from victim of my mental health to that of someone who, in recovery can help others.” [NEON story donor]

It is very important to us that we have a large collection of stories from people with a range of different experiences, so that NEON has the best chance possible of helping other people to find a story that ‘speaks’ to their own situation.  We are really grateful to anyone who considers donating their story  – we wouldn’t have NEON without them.

You might want to donate your story because you would like to help others who have been through something similar, or to prevent others feeling isolated.  You might see donating your story as a way of offering support, hope, or empathy to others, or of turning difficult experiences of your own into something that benefits others.  Donating your story might be an act of activism or resistance to structural inequalities such as racism or homophobia.  And/or you might donate your story as a contribution to health research – it will be part of discovering whether stories can improve people’s quality of life or increase people’s hopefulness that a meaningful life is possible (for example, you can see some of NEON’s published findings based on people’s stories here).  You can also choose to allow your story to be accessible to other research studies beyond NEON – this is entirely optional.

You can find some feedback from people who have donated their story to NEON here

How has the NEON study considered the wellbeing of narrators and recipients of stories?

This is a really important issue for us.  We know that sharing a story is an act of generosity, and accessing other people’s stories can be an act of bravery.  Some of us on the research team and all on our Lived Experience Advisory Panel have our own lived experience of mental health distress, and have told our stories in various settings, so we have drawn on some of our own experiences in thinking about issues of wellbeing.  We have also used the expertise of other survivor/service-user led organisations.  Here are some of the things we’ve put in place to ensure wellbeing:

For narrators (people donating their stories):

• Narrators have a right to withdraw their story from the Collection and trials at any time (further info here)
• Narrators can submit updates to their story at any time (further info here)
• Narrators can choose to donate their story anonymously
• Criteria for inclusion/exclusion have been drawn up by, and in partnership with, people with their own lived experience
• We hope we are completely transparent about our criteria and processes for inclusion and exclusion. Narrators can find information about these processes here.  If you would like any further information, you can contact us here
• Narrators can appeal a decision to exclude their story
• We have produced a set of good practice guidelines which are available here

For recipients (people accessing the stories in the trials)

• We have added content warnings to stories which contain references to any of the following: abuse or sexual violence; death or endangerment to life; self-harm including eating disorders; violence or aggression; injustice, prejudice and discrimination
• There are pages on the NEON intervention website giving details of resources for self-care and information about additional support for trial participants]. Participants can also add their own self-management strategies and choose to be reminded of them if wanted
• We will exclude stories which contain descriptions of potentially harmful behaviours in sufficient detail that imitation might be enabled.

How do I donate my story?

Donating your story to the NEON collection is a simple three-stage process:

First, you’ll need to read some information about how we’ll use your story in the NEON trial intervention and how we’ll keep it safe.

Next, you’ll need to fill out a form to provide your consent for us to use your story, providing your name and email address. We’ll keep this for our records.

Finally, a member of the NEON team will get in touch with you by email to arrange the transfer of your story so that we can check whether it can be included.

What is the process once my story is accepted?

Overview:

• A member of the NEON team accesses the story and makes an initial decision about inclusion based on our inclusion/exclusion criteria
• A second member of the NEON team accesses the story and checks the decision
• If both agree on the decision, it is implemented and the story is included or excluded
• If the story is included, the story is characterised using an inventory called INCRESE, to make it searchable within the NEON intervention. Content warnings are added if appropriate and the story is uploaded to the NEON intervention website for trial participants to access.
• If the story is excluded, the narrator or source collection is informed, and can appeal the decision
• If there is uncertainty about inclusion/exclusion, particular groups are consulted depending on the nature of the uncertainty. Further information about this process is available here
• Once a story has been included and uploaded, the narrator can withdraw it at any time by contacting NEON

How to tell my story?

First, you might want to think about whether you definitely do want to tell your story at this time.  Our colleagues at the McPin Foundation have released a guide for people who might be interested in sharing their mental health experiences, which includes some thoughts on reasons to share or not to share our stories.  You can download it in colour here and in black and white here.

If you would like to go ahead, we can accept stories in any format that can be presented online, including text, video and audio. If your story is text-based, we have a template available that you could use to present your story, but it’s up to you whether you use it.

Various mental health organisations have produced materials that can guide people in producing a story, including the following:

Scottish Recovery Network’s Recovery Story Sharing Materials

Mind’s guide for creating a written or video story

Diversity in the NEON Collection

We are committed to the NEON Collection being as diverse as possible, including:

• To ensure we have stories that represent a wide range of experiences, so that people who access the collection have the best possible chance of finding stories that ‘speak’ to their own situations
• Because we recognise that people who experience inequality within society can be disproportionately affected by mental health issues

Our commitment to diversity includes actively working with organisations and individuals to increase our range of perspectives, with a current focus on ethnicity, sexuality, neurodiversity and gender diversity.

To that end, we would particularly welcome the stories of people who identify as being from the following groups, who are currently under-represented in the NEON Collection:

1. a) Black, Asian and other minority ethnicities
2. b) Minority sexualities (e.g. lesbian, gay, bisexual, pansexual, queer people …)
3. c) Neurodivergent perspectives (e.g. people on the Autism spectrum or with ADHD, dyslexia, dyspraxia …)
4. d) Minority genders (gender-fluid, intersex, non-binary, trans people …)

We do however welcome all story donations from all people, and from narrators located anywhere in the world.

Please note that the terms used above reflect the diverse identities and experiences of British society – alternative terms may be preferred in other countries.