This week’s blog comes from our Chief Operating Officer, Mary Rose Roberts.
In response to a recent report from NCVO, Mary Rose delves into the growing mental health crisis affecting leaders of small organisations – and why it’s time for change.
The recently published report by NCVO and The Fair Collective, Breaking Point: The Mental Health Crisis in Small Organisation Leadership, found that 85% of small charity leaders experience poor mental health due to their roles, with 20% reporting severe impacts – “including hospitalisation, suicidal thoughts, and burnout”.
This is alarming – but, I suspect, unsurprising to anyone working in this space.
Small charities are the backbone of the charity sector, yet the stress on them is immense. I’ve worked for one of these small charities, Beacon, for nearly nine years – five in a position of leadership. I’ve seen first-hand the pressures and mental health challenges that our rare disease patient group leaders face and experienced plenty of it myself.
Reading the report, I found I could relate hard – it reflects the reality we live every day in this sector. But whilst the report brings important issues to light, it can’t just be preaching to the choir.
No one works in a small charity for the money
Let’s be honest: no one works in a small charity for the money. The sector is notoriously underpaid, and most people are here because they’re driven by a deep desire to make a difference.
Many have personal connections to the cause – especially true in rare diseases, where patient groups are often founded by those directly impacted by the condition. Few – if any – set out to become a ‘rare disease charity leader’.
Yet out of necessity – and with all the trials and tribulations that come with it – this is what these individuals become.
In small charities, under-resourcing and under-funding are the norm. In other sectors, you might downsize or pause services in such circumstances – but how does a charity do that when cutting back means people go without life-changing support?
Setting boundaries – as the report tells us to do – sounds great in theory, but in practice, applying those boundaries comes at the expense of the real people with real needs that you are ultimately trying to support.
And when the cause is personal it’s hard to just ‘switch off’ at 5 o’clock.
Wearing too many hats
So, what actually happens? As the report shows, leaders end up wearing multiple hats – becoming a “one-stop shop for all professional services”. In a small charity, you don’t have the luxury of hiring specialists for every need. You figure it out or go without, and the pressure piles on. That’s certainly been my experience.
And it’s not just about workload. Nearly 75% of leaders surveyed said they prioritise their team’s wellbeing over their own, preaching what they themselves don’t practice. Ding ding ding – I’m guilty of that too.
As I have learned – and continue to learn – emotional intelligence is crucial in leadership (and trust me I don’t always get this right). The pressure of perception is huge – leaders feel the need to keep things together for the sake of their teams, knowing their mood affects everyone else. But hiding your true feelings all the time is unhealthy – we need outlets too.
The broken funding model
The report rightly highlights the need for better mental health support for charity leaders. Amongst other things, it suggests setting aside budgets to support mental wellbeing and encourages a broader understanding that looking after yourself is not selfish – it’s essential to continue delivering support to your community. I agree with all of this.
However, I don’t feel it places enough emphasis on how external factors – particularly the broken funding model – make it incredibly difficult for charities to focus on internal change. The “recommendations for funders” feel almost like a secondary consideration when, in my opinion, it should be the primary focus.
Without reliable funding, charity leaders are left scrambling to keep their organisations afloat, constantly chasing the next funding deadline, and making impossible decisions about which services to prioritise. The knowledge that a funding shortfall could mean cutting vital support, losing staff, or even closing the charity, weighs heavily on leaders.
Many charities are stuck in a cycle of short-term, project-based funding, with funders often preferring “new” and “innovative” projects. But what about the core services that charities already know work and that their communities rely on?
These are the programmes that need sustained funding. Charities can’t build meaningful, long-term impact this way – and that pressure takes a serious mental toll.
At Beacon, we’ve seen first-hand the transformative difference that moving from a volunteer-led to a staff-led organisation makes for our patient groups. However, switching to a staff-led model comes with its own set of challenges, especially because ensuring the financial security and wellbeing of those staff now rests on the charity leader – an extra stress!
Yet, many funders inexplicably refuse to cover staff costs. People are the powerhouses behind small charities, and when they are well-supported, they can share the leaders’ workload (which, by the way, is how you really enforce those aforementioned boundaries).
The pressure of constantly fighting for funding – and I say fighting because that’s what it feels like – is a major contributor to the burnout many charity leaders face. Funders need to realise that the way they operate directly impacts the mental health of charity leaders.
Of course they can’t fund everything, and checks and balances are necessary, but they also need to be reasonable. Leaders are already stretched thin and every rejection – hearing “no” after weeks of hard work – is a huge setback for their mental health.
How Beacon supports the mental health of rare disease leaders
At Beacon, we are committed to supporting the mental health of rare disease leaders in a variety of ways:
- We’ve partnered twice with the mental health charity Rareminds to deliver Building Rare Resilience workshops– a collaboration we hope to continue.
- We run an annual mentoring programme that offers one-to-one support for patient groups in pursuit of their own goals.
- We run a leadership masterclass that pairs patient group leaders with a qualified coach to help them develop their skills.
- We recently ran a successful training session on tackling imposter syndrome, and published a follow-up guide on our Resources Hub.
We signpost to existing mental health resources, have a guide on our Resources Hub to help patient groups support the mental health of their communities, and an additional guide on how leaders can support their own mental health is currently under development.
The report also highlights the importance of a strong, positive relationship with your board for leaders’ mental health. We’ve previously hosted in-depth training on recruiting trustees and have a number of online resources on this. Unfortunately, our partner in much of this training – Getting on Board – closed in 2024 due to financial challenges – yet another reminder of the pressures facing small charities.
Supporting mental health within our own team
We know that working in a small charity comes with its own pressures and, whilst there is always more we can do, we’ve tried to create an open, supportive culture where mental health is taken seriously. As a small, close-knit team, we rely on each other professionally, but we genuinely care about each other as people – not just as colleagues.
Practically speaking, Beacon offers an Employee Assistance Programme that includes a free, confidential counselling service. We have flexible working policies to help staff maintain a better work-life balance and provide time off in lieu to ensure that longer hours are balanced. We have a generous annual leave package to make sure everyone can take proper breaks and recharge, and we encourage staff to take mental health days when needed, recognising that this is just as important as physical health.
We know looking after our team’s mental health is essential for delivering the best support to the rare disease community. If we want to create a culture of care for patient group leaders, it must start with how we treat our own staff.
Systemic change is needed
Small charity leaders are doing extraordinary work under near-impossible conditions. We are passionate about what we do – and most of us, myself included, stay because we genuinely love it despite the challenges. But sustaining our vital work becomes much harder when the structural issues are so overwhelming.
Making changes from within can help, but meaningful change must come from the top down. Asking charity leaders to simply “set boundaries” while facing these challenges is unrealistic.
Charity leaders cannot keep being expected to do more with less. If we truly want to support our communities, we must first support those leading these efforts – or, as the recent wave of charity closures shows, we risk losing them entirely.
Thank you for reading this blog.
If you are finding things difficult at the moment, you’re not alone – take a look at these mental health courses for support.
