For 20 years NPC has been helping philanthropists and charities to maximise social impact in the lives of the people they serve. To mark our 20th birthday, we’ve been talking to leading figures and people doing things differently to ask: Where next for social impact? In this essay, Helen Garnham, Claire Handy, Lee Holt, and Kaneez Shaid work together to explore the future of user involvement, what has changed since the pandemic, and how we can build on the positive and overcome challenges in the future.
In this essay, the term ‘Experts by Experience’ refers to people with lived experience of receiving mental health support or caring for someone who has received mental health support – they could be already involved in co-production or not at all. Opinions are the authors’ own.
‘Where I am now is completely down to charities – my work, my growth – they have given me the tools and techniques to support my recovery.’
Expert by Experience
Charities can be vitally important to people’s recovery, but there has not been enough progress towards making sure charities’ work is truly shaped by Experts by Experience, who need to be engaged meaningfully. Larger charities will sometimes subcontract to grassroots organisations when working with underserved communities. Too often though they do not enable what is needed by that community, but merely what is wanted by the subcontracting organisation.
This is not good enough. In the future, charities need to work in the spirit of collaboration, not competition, and support grassroots organisations who are mostly led by Expert by Experience. In our Community Mental Health Unit, we try to be the stewards of the system – building alliances, allocating micro grants, encouraging innovation, taking on risks that smaller charities can’t, and giving a voice to as diverse a population as possible.
‘Communities have the solutions, but they don’t always have the funding and resources. Applying for micro grants is a full-time job and often not in people’s skillset or the best use of their time.’
Expert by Experience
Connections are at the heart of a healthy community
Charities have always reached deep into their communities. Grapevine are doing wonderful work in Coventry, supported by The Kings Fund, in which they’ve brought together people from the whole community over three days, including the vicar, community groups and people from the community centre. These are the true ‘mental health workers’. For an Expert by Experience, isolated and depressed, the smile from their postman made their day. What emerged as important to people wasn’t necessarily about mental health services but the value of connection.
During the pandemic, we saw communities coming together organically, from checking in on neighbours to street WhatsApp groups and people setting up mutual aid groups, so we know it can be done.
‘Covid 19 vaccination was a great example of voluntary, community, and social enterprises reaching into communities – trust exists in often unnoticed organisations – from faith institutions such as mosques, synagogues and churches to football and social clubs.’
Expert by Experience
The future is digital and hybrid
The pandemic has accelerated digital communication, and this is not going to go away. This can be of huge benefit to many Experts by Experience who were previously excluded from face-to-face conversations. If, for example, you’re agoraphobic, unable to travel, or live in a rural area then it’s likely that you were previously excluded. Now though, you can shape mental health services digitally. This can bring a great deal of meaning and reduce isolation. But we need to get the balance right. Some people prefer face-to-face contact whilst others face digital poverty, so in the future we will need to embrace a wide range of communication to reach underserved populations.
‘We have a responsibility to make sure people have equal access.’
Expert by Experience
Handing over Power
The pandemic saw traditional hierarchical structures challenged. We need to build on this momentum. We’re slowly progressing up the Ladder of Co-Production from the early days of ‘informing’, but the future needs to see Experts by Experience ‘leading’.
Experts by Training need to understand that they may be holding power that they don’t even realise they have. It can be intimidating to challenge a ‘Chief Executive’ or a ‘Doctor’, so this needs to be considered in ways of working.
In Coventry, as part of the NHS Community Mental Health Transformation, they have set up a ‘Design Authority’, which is a group of Experts by Experience who support and inform community mental health transformation. The Design Authority are embraced as equal partners and involved in every single workstream. By co-chairing, joint bid-writing, being on interview panels, influencing recruitment, and feeding back on and informing training packages, they are integral to the redesign. The Trust invests in the Design Authority with training and work coaches to build confidence in challenging Experts by Training and managing workload. The Trust recently hired an Expert by Experience to help develop a Lived and Life Experience Workforce, which is a strategic and highly influential position.
As we build back better from the pandemic, we don’t want to return to rigid systems that are unable to move and have to shut down in a crisis, nor do we want systems that are highly disruptive to the point that there is unmanageable conflict. We think the future looks like a system that shares spaces, power, roles, money, and time to build relationships – systems where Experts by Experience co-chair, sit on boards and are part of driving agendas and wider system change.
‘Experts by Experience being in a leadership role in a charity feels radical but hopefully it won’t in the future.’
Expert by Experience
We are increasingly seeing more participatory methods of evaluation, but this will need to go further in the future. It is often said that you treasure what you measure, so it is important to co-produce evaluation as well as evaluating engagement with Experts by Experience in itself.
In our Northwest London suicide prevention project, we have been working with Nurture Development to co-produce an evaluation toolkit. This has produced innovative ideas such as a set of cards that can help illustrate where an Expert by Experience is on their journey and a personalised form of evaluation built around peer support that is then discussed in a group where confidence, anxiety and trust are measured. We could even measure trust in systems in this way. It also emerged that Experts by Experience want to capture cross-institutional issues when evaluating pilot projects; for example issues like housing, poverty, lack of education were all linked to deteriorating mental health and suicide ideation.
Conclusion: Time to share power
This is a challenging time for charities and the communities they work with. The worst thing you can do is retreat into old ways of working. ‘You don’t know what you don’t know’, so now is the time to share power with Experts by Experience to get deeper insights to make greater impact.
During the pandemic, funders started to take more risks and money flew faster with less bureaucracy, benefitting the charitable sector. Funders have the power to influence change and champion charities that genuinely engage with their communities. We very much hope and predict that this will be the future.
The time is now to embrace what we’ve learnt from the pandemic, to stand firm and resist going back to our old ways of working and to proactively engage with the challenges of today and what lies ahead for humanity.
We hope you find these essays and interviews engaging and thought provoking. We’d love to hear what you think the future holds, and what you believe NPC should be focusing on. You can join the conversation using the hashtag #20yearsofNPC or through our events. As a charity ourselves we rely on the generosity of those who value our work to help us to continue to produce research and guidance to support the sector in maximising social impact. Visit the 20 years of NPC page to find out more.
Thankyou to PwC for sponsoring our essay and interview collection.
By Helen Garnham, Claire Handy, Lee Holt, Kaneez Shaid.
Helen Garnham is Head of Equalities at Rethink Mental Illness, Claire Handy is an Advanced Lived Experience Development Lead, Lee Holt is an Expert by Experience Lead and Kaneez Shaid is Head of Community Engagement at Rethink Mental Illness.
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