The HOAX Project

The HOAX Project, 2012-2018

(Themes: psychosis, schizophrenia, paranoia, suicide, treatment, therapy, drugs, family, mental health)

 

Contents

A True Story
HOAX 2012-2014
.   HOAX My Lonely Heart (stage musical)
.   HOAX Psychosis Blues (graphic novel)
HOAX 2012-2014 Qualitative Feedback
The HOAX Project 2015-2018
The HOAX Our Right to Hope App
The HOAX Tour
.   HOAX My Lonely Heart (revised)
.   HOAX Psychosis Blues (second edition)
.   The HOAX Tour Website
The Mental Health Study
The HOAX Project Quantitative Results
The HOAX Project 2015-2018 Qualitative Feedback

 

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A True Story

 

The HOAX Project was a long term, ambitious project that sought throughout to push the boundaries of engagement, involvement and impact around serious mental illness.

It began with two existing, award-winning Ziggy’s Wish crossmedia applied narratives, created and launched 2012-2014. Both were based on the true story of a young man from Manchester called Rob, his life with schizophrenia, through to his death by suicide.

The first was the stage musical HOAX My Lonely Heart; and the second was its sequel the graphic novel HOAX Psychosis Blues.

Here these are collectively referred to as HOAX.

 

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HOAX 2012-2014

 

Rob was a poet in real life. HOAX was inspired by the poems he wrote leading up to and during his time living with schizophrenia.

 

HOAX My Lonely Heart (stage musical) 

The stage musical tells a backstory. It is the tale of two people – Rob and Helen – their meeting, their belief that the immediate need they satisfy in each other is love, the truer co-dependent nature of their relationship and their ultimate breakdown.

The show opened in Royal Exchange Theatre, Manchester 2014, running for four consecutively sold-out nights. It received outstanding reviews and was shortlisted for the Medicine Unboxed Creative Prize 2014.

 

 

HOAX Psychosis Blues (graphic novel)

The graphic novel tells Rob’s story beyond the end of the stage musical, post his diagnosis as having schizophrenia, and the difficulties he faces over subsequent years.

The book was published alongside the show in 2014. It was nominated for and won several awards including Comics in Education Graphic Novel of the Year 2014, British Comic Awards Best Book 2014, Comica Top Ten British Graphic Novels 2014, Critic’s Poll Publishers Weekly 2014, and The People’s Book Prize 2014/15.

 

 

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HOAX 2012-2014 Qualitative Feedback

 

It was evident from the qualitative feedback that HOAX had a profound effect on its audiences, suggesting these crossmedia applied narratives held a very real potential to change attitudes, reduce public stigma and reduce self-stigma around mental health.

A hauntingly beautiful masterpiece. (Andy Oliver, Broken Frontier)
This is a moving and important work. (Dr Ian Willliams, Graphic Medicine)
We can only come away from HOAX Psychosis Blues with a fuller and more profound understanding about schizophrenia and its impact. (Glen Downey, Sequart)
With the degree of mystery, stigma, and fear that shrouds mental illness, it’s something special to be understood on the profound level here. (Jules Valera, Mental health sufferer)
Still thinking about HOAX My Lonely Heart last night. Its dark beauty and powerful language reminded me of Sarah Kane. Haunting. (@allthingsdrama)
I can’t really convey how important I believe this project to be, spellbinding in its execution. It gives a voice to those who do not have one. (Matthew Charlton, The Good Review)
It has made me think a lot about people I know who are or have experienced psychosis… and reflect on the way they are treated by people, services and by me! (Sarah Radford)
A powerful window showing the plight of a schizophrenic sufferer. A bold and necessary piece of storytelling indeed. (Jon Turner, Your Days Are Numbered)

 

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The HOAX Project 2015-2018

 

In 2015, we began working with the Psychosis Research Unit (PRU) – a joint project between Greater Manchester West Mental Health NHS Foundation Trust and The University of Manchester – to explore how PRU might quantitatively harness that potential and test the hypothesis that HOAX could lead to positive behavior change around mental health, and even to self-recovery. Thus we created The HOAX Project – a world-first crossmedia applied narrative, health research study.

PRU promotes a normalising approach to understanding psychosis, and believes the experiences commonly regarded as symptoms of psychosis are often highly understandable reactions to adverse life events. Their primary aim is to develop ways of reducing the distress of people with these experiences, as well as developing ways of restoring their autonomy and dignity.

The aim of The HOAX Project was to study the impact of HOAX on audiences, including those with lived experience of psychosis-related difficulty; and whether this impact was long-lasting.

For this to work, PRU required access to a wide range of members of the public, as well as an optimized way to gather data from them over time. It was crucial this data-collection method supported the HOAX content being studied, to minimise the audience being ‘pulled out’ of their engagement with that content, and therefore to give the truest reflection of its impact.

Thus we developed and delivered a mobile app for the project, using digital applied narrative, titled HOAX Our Right to Hope.

 

 

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The HOAX Our Right to Hope App

 

The HOAX Our Right to Hope app was specifically designed to help people connect to PRU’s mental-health research in a way that showed them why the research was important, and why they should take part in it.

As such, the app not only housed PRU’s study questions, but it also wrapped them in a new piece of HOAX applied narrative that we created to seamlessly dovetail with the original HOAX content – introducing, linking and concluding it – and meant the audience could take part in the study without feeling like they were leaving the HOAX experience.

As this new piece of applied narrative was digital, it also meant we could provide PRU with highly efficient data-capture, categorisation, and export capabilities.

In addition it meant we could provide different interactive experiences for our different audience segments, ie. general public, and those who had lived experience of psychosis-related difficulties: with the app loading different study questions for each group, as well as providing different narrative experiences and associated support.

 

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The HOAX Tour

 

In order to engage with a wide range of members of the public, we secured Arts Council England Strategic Touring Programme funding, to tour a pilot of The HOAX Project across the north of England.

The tour ran across five venues in spring 2017. These were Barnsley, York, Grimsby, Liverpool and Salford: areas known for having low engagement with the arts and poor uptake of mental health services.

Tickets to the event included entrance to the HOAX My Lonely Heart stage musical, a copy of the HOAX Psychosis Blues graphic novel, and access to the HOAX Our Right to Hope app.

 

 

HOAX My Lonely Heart (revised)

As the applied narrative employed in HOAX is raw, emotional and powerful, we revised the original musical to reduce its running time, in order to accommodate the potentially vulnerable audiences that the study might attract. We also held post-show discussions after every performance, and provided additional clinical support at each matinee.

 

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HOAX Psychosis Blues (second edition)

A limited, hardback, first-edition run of the graphic novel had been printed in 2014. For the 2017 tour we commissioned a larger, paperback, second-edition run: more cost effective and, crucially, more portable across the tour audiences.

 

 

The HOAX Website

Key to the mental health research study was its anonymity, but also that each participant in the study had a unique identification code. To ensure this, we associated a unique code to each ticket that was sold. Audience members entered the code to access the app. For those who then chose to participate in the embedded study and answer the questions there, it meant their data was anonymous, attached only to a code, and not to them as individuals.

In order to deliver tickets with unique codes attached we created the purpose-built HOAX website.

 

 

Anyone could visit the website and engage with The HOAX Project, but we specfically targeted Healthcare, Community, Educator, Alternative Venue and Arts Venue groups: offering patient-centred perspective; insights into the difficulties faced by partners, friends and family; access to and engagement with ‘hard to reach’ groups; exploration of new and alternative means of treating people with mental health difficulties; validation and recognition for work done in the mental health sector; shared results; diverse representation; relatability; tangible help for at-risk individuals; subsidised arts provision; awareness raising; empowerment and encouragement to counselling; educational resources; new community connections; venue profile and exposure; new audience development; multi-stakeholder engagement and strategic partnerships; innovation; qualitative and quantitative evaluation; high quality artworks; as well as the chance to participate in a groundbreaking mental-health study, and contribute towards positive social change.

 

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The Mental Health Study

 

HOAX presented an opportunity to evaluate novel intervention strategies that could impact on mental health outcomes. As such, PRU’s research study aimed to provide preliminary evidence around the feasibility of HOAX to address multiple facets of mental health stigma.

Study questions were offered to participants, via their interactions with the HOAX Our Right to Hope app, across four different timepoints. These were Baseline (prior to the musical), Post Musical, Post Graphic Novel and Follow Up, and spanned a time period of six months.

General-public participants were asked questions that assessed behavioural intent and stigmatising attitudes, in order to explore the influence of HOAX on public stigma. Participants who self-selected as having lived experience of psychosis-related difficulties were instead asked questions to assess the influence of HOAX on internalised stigma.

All participant responses were gathered via the HOAX Our Right to Hope app. To best support PRU’s analysis of this data, we created a unique web administrator, purpose-built on an adapted database to ensure export compatibility with PRU’s existing data analysis systems.

 

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The HOAX Project Quantitative Results

 

The Psychosis Research Unit carried out a detailed analysis and interpretation of the health research study data that we captured, categorised and exported via the HOAX Our Right to Hope app.

From this came several significant findings including an increased engagement with the subject matter, as well as a positive change in attitudes towards people experiencing psychosis, and an increased likelihood of help-seeking if people suspected they were experiencing symptoms of psychosis. These findings were still true several months after the initial engagement.

With the stigma around mental health, particularly serious mental health conditions such as psychosis, being a major barrier to engagement, understanding and help-seeking, the findings highlighted the absolute potential for crossmedia applied narratives to bring about genuinely positive change; allowing PRU to build on their highly innovative and progressive work in the field of serious mental illness.

 

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The HOAX Project 2015-2018 Qualitative Feedback

 

In addition Ziggy’s Wish gathered qualitative feedback from the many sectors and stakeholder groups that we engaged with across the HOAX Tour.

I must say that I found the respective questions really helpful. It helped me to see the subtleties of how my perception of psychosis and mental health problems was changing. The thing I liked especially is that it’s easy to think I’m right-on and open, but the subtleties of prejudice, fears, judgements and just blindness opened up to me as I went through the parts. You have created such an incredible interactive artwork. It’s mind-blowingly brilliant and as a society we need to talk about mental health. (Annabel Newfield, Shakti Tantra practitioner)

After the play he said he had enjoyed it and also told me about his girlfiend having a miscarriage last year. He told me that he was not there for her and did not realise the impact of this on her until watching your play. This brought a couple of tears down his face which he said was a good thing for him to experience as he has struggled in the past to express his emotions. Thank you for bringing this performance to Grimsby and giving people the opportunity of seeing and experiencing this performance which was outstanding. (Jeanette Blythe, Early Intervention Practitioner)
Very powerful and groundbreaking performance, raising awareness of, and tackling the stigma surrounding mental health. (Cllr Eddy Newman, Lord Mayor of Manchester)
Combining arts, health and tech to help understand psychosis. Powerful, emotional and unforgettable. (@Ali_Clintworth)
I’ve a feeling this is a model that other people might want to use for other things because of its immersive quality. You’ve invested in Rob already if you’ve done the app. You’ve got some thoughts about this person and his friends because it’s earlier on before the events of the play. And obviously the graphic novel is after, so you get really involved in it. (Mental health nurse)
Tickets are ready, looking forward to it… Seriously impressive app highly engaged already… Arrived for HOAX, good to see so many people here… So pretty speechless right now, the value of arts and health clearly demonstrated… Talented cast and a story that will remain with you… Absolutely, fantastic production values highly rated, but the add on from app and graphic novel makes this very special. (Emma Leigh, MBE)
It was absolutely moving and gave a breathtaking insight into psychosis. (@nicnak91)
Thanks for showing psychosis is not a dirty word. (@patiani)
On Wednesday 19th April I went to my first musical it was at Grimsby Central Hall. This musical is to raise awareness about psychosis. I feel the musical was beautifully written. I love how it showed you from Rob’s and Helen’s point of view at the same time so you can see from both of their perspectives. The room in the Grimsby Central Hall wasn’t to big so it made the performance more intimate and you felt the music run through you and feel more close to the story. I can’t get the music out of my head. When I got back home I told my partner about it as he knows what is like to have Schizophrenia as he been diagnosed with it since he’s 17 and still has it but medicated. This performance made me cry and it was so raw and so true to what it is like to have Schizophrenia. I know I don’t know personally but my partner has told me what it’s like day to day. So this musical performance gave me the insight in what it is like for people with psychosis and I hope there will be more performances around the UK as this needs to be shown to stop stigmatization on Mental Health. (Zoe Leeman).
I had expected it to be interesting but wasn’t prepared for just how good it is. It’s funny, touching, surprising, powerful and authentic. (Audience member)
The art in the HOAX app is gorgeous. Amazed at how smooth it comes through. (Matthew Noe, Outreach Librarian)

Thank you for telling this story. I can’t imagine the strength it took for you. You have made such a big difference to so many people’s lives just by giving this experience a place to be shared. You have also done something enormous in documenting and evidencing the impact of art – and for that I have to thank you professionally. (Erin Sanchez, Healthier Dancer Programme Manager).

Can’t wait to see HOAX theatre challenging mental health stigma. Everyone has the right to hope! (Whittingham Lives Project)
HOAX did a fantastic job with such a difficult story line. Will definitely stick with me! (Cameron Dobson)
The discussion was really useful and a great way to start a debate about voice hearing and severe forms of distress. I hope this production is one way to reduce discrimination around voice hearing, and to change unhelpful but common stereotypes about voice hearing. (Audience member).
People will be resistant because it’s a real investment to come and say ‘I’m actually going to go to that dark place that has been so beautifully constructed and presented and performed’… but, it’s just amazing. (Audience member).
I found the play very useful in terms of showing me how psychosis might look and feel to an individual experiencing an episode and how it can appear to their friends or family. (Audience member).
HOAX is marvellous, you can really see the light at the end of the tunnel for people with mental health issues and depression. (Audience member).
I thought the potential reality you portrayed in the performance was incredible. (Audience member).

It’s really illuminating, and very, very powerful. That role is of nurturer and on the other side perhaps saying what someone wants to hear. It was really illuminating. With regards to an NHS training tool for professionals and people working who may come into contact with clients who are developing or displaying symptoms of psychosis, it was really, really powerful, really powerful. (Audience member).

I wanted to give you some overheard feedback. I was in the toilet after the show and heard a girl crying. She told her friend that at the beginning of the performance that she thought it wasn’t going to be for her and she wasn’t enjoying the opening song. But by the end she was profoundly moved and couldn’t stop crying. (Audience member).

It’s an incredibly creative, novel, idea that I’ve never heard of before. I just think it’s so clever. (Audience member).
It was absolutely superb it was enough to bring tears to your eyes, incredible. (Audience member).
This is raw emotional stuff and that’s why there are those defences up in big organisations and why they’re so resistant. (Audience member).
That was so close, you know, getting under your skin. How actually easy it must be to go haywire. I have to say I felt, good heavens, I could so easily have ended up like that. (Audience member).
We all really enjoyed the production and its provoked a lot of discussion amongst the family, and has certainly started the process of reducing stigma – and made us want to raise awareness of the importance of early intervention. (Audience member).
I thought the staging was very clever, the lack of space Rob was allowed at times, because that must’ve been so frightening. To suddenly feel like the seat that you’re on is not there – it’s a simple thing but actually, it must be really, really frightening. I thought you portrayed that really well in the performance, really powerful stuff. (Audience member).

Brilliant show everyone! A moving piece of drama enhanced by some fantastic music. Also loved the movement aspect of it which reflected the lyrical poetry of the piece . I hope you get the required response to move this project forward. Important that mental health gets the profile it needs for society to become mentally healthy. (Audience member).

Helen didn’t know what was happening to Rob. If someone’s given the right opportunities, if someone doesn’t have that deep-rooted stigma that prevents them from accessing help then, certainly, things could be very different. (Audience member).
Because one emotionally engages with it, you’re having a proper emotional response to the material and that’s how it captures the research. It’s actually reality capturing raw emotions. (Audience member).

It’s amazing that someone has been able to take something so painful and challenging and create something beautiful. It’s really moving and really beautiful and really inspiring. (Audience member).

I’m sure that your results from your research will show a significant impact. I really hope that this goes national. It’s brilliant, and I’m still processing. (Audience member).
I was watching it and I was thinking, I cannot believe the power and potency of what I’m actually seeing here and this is really helping me understand a mental health problem. (Audience member).

I think the thing that that speaks to me about is institutional defence mechanisms, organisations defend themselves against the visceral raw power of what you did on that stage, it was just, sorry I’m going to say it: fucking awesome. (Audience member).

I’m a mental health nurse and I work with mentally ill people and children, and the whole way that you produced this I just thought it was amazing and it was frightening to watch, it was disturbing to watch, in a good way. (Audience member).

We, as Samaritans, should be telling people to come and see HOAX, the author is really helping people to understand what happens in people’s lives. (Audience member).
Thank you, and the cast, for a brilliant, thought provoking evening. It was a difficult subject to watch but performed brilliantly. Thank you so much for what you are doing. (Audience member).

I’m going to take this back from tonight and I’m going to tell them I met a group of people who made a play tonight, watched that, witnessed that, and have taken the time to sit down here and talk about this. (Audience member).