For involvement to be meaningful, it needs to make a difference to the lives or the experiences of service users and carers. But far too often my involvement as an invited person with lived experience (LE) to co-produce has been undervalued, wasted and tokenistic. From an initial feeling of gratitude for being invited I feel ultimately let down and misled. I hate to provide such a negative view but feel it should be said. I do try to balance my negative experiences with how it should be done and give examples when I can. Because there is some great work being done by good people and there are certainly solutions. But you also need to see the suffering which results when co-production is not fit for purpose and I give you a personal glimpse here.
My background and reasons
I have a deep hole in my body due to my own mental health struggles of anxiety, depression, chronic OCD and eating disorders. It can vary in size from a never-ending pit of aching to a more comfortable space filled with enthusiastic grasshoppers wanting to leap out and grasp the potential beyond. Those grasshoppers are fed when I see that using my own negative experiences navigating the mental health system, the benefits system, and a career in education, is turned into positives. When what I offer is really heard, shared with the right people and then acted upon. It also happens when policy advisors take my evidence to the decision makers who ultimately decide where finances will be spent, what support will be offered locally, perhaps rewrite papers (even if just a few words that can really change the impact), revise criteria for accessing help, remove barriers, and remove ineffective interventions and recommendations that waste money and lives.
Initial involvement at the beginning to fully influence the work done
Do not fail to listen and hear our voice. The suffering caused by mental ill-health is huge, but the amount of new research and innovation to make things better is tiny by comparison. Enormous potential for major breakthroughs is missed because you are not involving LE experts from the start to finish.
You need to involve us at every step. Not just the initial stages, nor add-ons to the middle or just at the end but fully involved from start to finish. If we are only seen as additional advisors and not the real meat, bones, movers and shakers that we truly are then you fail to improve and correct the assumptions and ideology which are so often wrong and harmful. We can make a difference to you by improving your outcomes and then more importantly, the wider society if you only give us the voice and opportunity. Please do not overlook or dismiss us. We have such valuable contributions at each stage of your work and not only suitable for the occasional input.
Community connections
People with lived experience bring their own networks with them and form valuable connections with the very people who need to access the results of research and its impact when it is done well.
The significance I bring lies in my ability to foster empathy, understanding, and connection among those in my networks who are undergoing similar struggles. I can get the findings of good research back to the very people that need it. I can also offer a level of support and understanding that others cannot. They may be more likely to trust and confide in someone local to them who they feel can relate to. As a result, their own engagement and trust in treatment can be improved.
This rarely happens in practice and opportunities are sadly lost.
Language and documentation
I cannot state how frustrated I get in some meetings where the academic leads, professors, research staff overly use acronyms, technical, scientific or specific academic styles unique to these fields. I am educated yet feel excluded and sometimes thick. I have the experience and expertise to make this style of writing more accessible. I can make paperwork more accessible to those that need it most, I can make it more understandable and less overwhelming, translate “jargon,” and communicate important information in more accessible ways. I can make paperwork easier for people to complete. If my expertise is used it helps so many yet there still exists so much excessively complex paperwork which cannot be used by the people that need it. This results in lack of knowledge, engagement and chances to engage.
Let me help overcome this barrier.
Career opportunities
Being open about my lived experience limited my career and ultimately led to my dismissal because lived experience expertise is not seen as an asset and strength that enhances our work, but a risk to professional ability or reputation. Even if recognised that you can still fulfil your role it is only suitable up to a limited level of responsibility. Systems are not structured to allow us to truly lead, but just advise, consult and participate. Please look to our LEAB (Lived Experience Advisory Board) at the ESRC Centre for Society and Mental Health as an example of how people with LE lead from the highest positions.
I lost my job and do not want this to happen to anyone else.
Walk the talk
There is a huge difference between what the people holding the power to change policy decisions and invest in suitable services and support, say they will do and what they actually do. Done well, they remain true to the closing statements at meetings where they promise to take our contributions forward and uphold our needs. The pudding sadly lacks that proof we gave!
Sadly, I have been involved in many boards where I expected the changes agreed to be made, yet there has been no evidence to show anything. Worse is when I try to contact the people involved to find out what the state of play is to be told that person no longer works there or holds a different role. They are not available for any answers. I have no further means of contact. What was the point?
Compensation
The time and energy I put into everything I do is often unseen. Given I am passionate about creating a better future so that others do not suffer the frustration, pain and irrelevant history I have, I take my involvement extremely seriously. I invest real thought, time, effort and energy. When it is acknowledged it means so much and gives me huge feelings of belonging and self-worth. When offered a voucher or sent a little gift through the post to say “thank you” it means the world – that my input was valued and not taken for granted. So yes, people who give insights (in whatever way) about their LE should be compensated for their work in a way which is meaningful to them. This may include traditional payment, acknowledgement on research outputs, letters of recommendation for future roles, etc. This should be decided together to ensure people are compensated in the way that works for their circumstances. Yet I see salaried LE roles being frequently paid much lower than other staff roles or as in my case, taken as “voluntary time”. Where we add the icing or even cherry to the cake but are unacknowledged for our contribution this hurts me. Given how much we invest and add value, lack of any recognition is quite insulting and cruel!
I have recent experience serving on an eight-months NHS project in which I invested huge amounts of time. I did not want payment as such but received nothing apart from the generic email sent to all involved for their thanks for the contributions to the study. Perhaps more insulting was the insertion of the document to claim expenses for those in formal employment in the NHS.
Results/end of involvement
I always ask to be informed of the results, outcomes, further developments on everything I am involved in. I do not engage in anything that I do not want to see change for the better and so need to know what the latest developments are. Whether positive or negative, I was involved and have a stake in this so feel I should be informed of any developments. I may need to clarify or correct mistakes I made. I need to know how my involvement has been received and if it has had impact. What can I learn and improve on for future benefit? Yet in numerous studies and projects where I filled in all the forms to be involved in future newsletters and developments and updates I received nothing. After a year’s lapse from my initial involvement, I contacted the links given only to be told the email addresses no longer exist, study ended, contact not available, or an undeliverable message. What happened to my input? I feel guilt I might have done something wrong. Where do I go from here? Huge feelings of despair that my involvement was futile. Was it worth all my effort and investment? So many feelings of despondency and pessimism about whether I should involve myself in future because I obviously was not important enough or my contribution was useless and not needed. Lack of communication about the outcomes is so frustrating and makes me consider whether it is worth engaging in future work because it makes me question whether I was valuable or perhaps the opposite.
Conclusion
Yet I still believe I have potential for impacting society in a positive way with my experiences. I have this (maybe daft) belief I do have much to offer and do have some value.
Deep down, I still believe research that involves LE is crucial for developing effective interventions to prevent or treat mental health because we can inform about what does and does not work. We can identify and pinpoint the useful stuff that reduces our suffering with the hope that others can benefit too. OK, it may not work for everyone but if it helps just one person it is worthwhile. So please do not ignore us and our story!
When co-production goes well and produces changes, action and tangible results that can be seen and accessed, even when it says it will do “the right thing” my grasshoppers spring into action. But far too often they don’t get a look in and that damn hole gets bigger and my grasshoppers die. I do not want to become so jaded I stop trying so please help to ensure the participation of people like me.
(Author: Rachel Hill is a former languages teacher with long term experience of living with a mental health condition. After forced retirement left a huge gap in her life purpose, she no endeavours to use her experience to inform, encourage, inspire and motivate others. She finds her mental health journey is now presenting meaningful opportunities. “The greatest good I can do is not just share my story but actively work to improve/create services so that other sufferers have an easier time in accessing the help they need to help themselves.” She is passionate to create impact and shape future decisions about what is helpful, needed and potentially beneficial not only for those suffering but for those NHS policy makers who decide where funds are spent in the research and treatment of mental illness.)
* Photo description: My work matters because behind every study are real lives, and every voice helps build a future where no one is limited by their background or diagnosis. I want this for myself, my father and humanity because we are all equally deserving.
