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User-led Charities: Including Everyone for Greater Impact


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Charities have always been a way for people to come together and make a positive impact in their communities. But have you heard about user-led charities? These are organisations that are run by and for the people they serve. In this blog post, I want to explore the benefits and challenges of user-led charities, as well as the importance of including everyone for greater impact. As someone who used to run a user-led local charity, it's a topic close to my heart.


What are user-led charities?

User-led charities are organisations that are run by the people they serve. This means that the individuals who are impacted by the charity's work are also the ones who make decisions about how the charity is run. User-led charities are about empowering people by giving them a say in the decisions that affect their lives. "Nothing about us without us," is a well-known saying among charities for deaf and disabled communities.


The benefits of user-led charities

User-led charities are more likely to understand the needs of the people they serve. When people are involved in the decision-making process, they are more likely to come up with solutions that are tailored to their needs. This can lead to more effective and impactful programmes and services. Another benefit is that they can be more sustainable in the long term because the people who are served by the charity are also involved in running it. In other words, they are invested in its success. This can lead to more dedicated volunteers and staff, as well as more engaged supporters. (That was certainly the case with my own charity.)


Users as experts

User-led charities are also the experts. There will be times when as a user-led charity CEO you will be faced with a commissioner or funder who is keen to apply a 'one-size-fits-all' performance criteria. This can be an opportunity to speak up and share knowledge in a way that enables others to gain a better insight into the lives of your beneficiaries. For example, helping an individual into employment is sometimes only half the story; for your beneficiaries, helping them to stay in employment beyond the first few weeks is a challenge that unknowing funders may overlook.


The challenges of user-led charities

While user-led charities have many benefits, there are some challenges too. One of the biggest challenges is that our user-led organisations can be limited by the skills and experience of their staff and volunteers. It is true that in the sector I know about, which is deaf charities, there are some hugely talented individuals whose positive impact is felt not just among the deaf communities they serve, but at a society-wide level. However, there are only so many amazing individuals you can pull out of a small pool. Such talent is at times sorely stretched.


Skills shortage

Recognising a shortage of skills within your own community or group can be a hard truth to swallow, particularly when one of the codes we all live by in the charity sector is to make our organisations places of opportunities. Sadly, in 2023, we live in a time when sustainable funding is ever harder to come by, and funders apply performance measures that even twenty years ago were unthinkable. These days a user-led charity has to look beyond the employment and volunteering opportunities it provides to its own users, and consider the wider social and environmental impact its charity is making. In short, being user-led is not a satisfactory end in itself; to thrive, you need to be a well-run organisation as well.


Being inward-looking

Another challenge is that user-led charities can sometimes become inward-looking and too focused on the needs of their own users. At first that might seem odd: why wouldn't you focus on your users if you're a user-led charity? But occasionally you do witness a kind of self-defeating one-upmanship of victimhood that prevents organisations from appreciating the bigger picture. Working together for a more just and equitable society is always going to be better than trying to change the world on your own.


Many user-led charities are exemplars of inclusivity but, especially those user-led organisations centred on communities which historically have suffered oppression, there is a risk to being purist about what 'user-led' should actually mean. If a charity becomes too focused on only giving a voice to its users, this can lead to resistance to thinking about needs as part of a bigger picture. And to accepting help from outside the organisation and 'outsiders' when not to do so would limit the charity's ability to innovate and grow.


Conclusion: including everyone for greater impact

User-led charities can be a powerful force for change, offering a more inclusive and democratic approach to charity work. However, there is a balance to strike between inclusion and collaboration. While it is important to prioritise the voices of those who are directly impacted by services, it is also essential to recognise the value of diverse perspectives. Collaboration with people who have different skills and experiences can offer a unique perspective, leading to more innovative and impactful services.


Thanks for reading!


Jenny Hopkins is the founder of The Boiling Frog. Having spent the earlier part of her career in publishing, she switched to the charity sector and became CEO of a local deaf charity. Over a period of ten years, she is credited with transforming it into an award-winning organisation and trusted partner of local health and social care statutory bodies. She has since stepped back from that role to embark on a PhD about the impact of marketisation on deaf charities, alongside mentoring other CEOs of small charities. She uses The Boiling Frog blog as a way to reflect and challenge her own experience and perceptions about the role of charities in society today. She also volunteers as a trustee for two charities.

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