Parkinson’s UK supports thousands of people through one of the most active condition-specific forums in the UK and a fast-growing Facebook community. As conversations became more complex and member needs intensified, the charity recognised the need for expert, human-first forum moderation and support.
Freya Kendall, who leads social media and digital community engagement at Parkinson’s UK, describes the moment they realised they needed a partner who could go beyond simple rule enforcement:
“Our online groups aren’t just places to chat – for many, they’re an emotional lifeline. We needed moderators who truly ‘get’ that.”
This is where Social AF stepped in.
The Challenge
A fast-moving community with sensitive needs
People come to Parkinson’s UK’s online spaces at every stage of their journey – diagnosis, progression, treatment changes, or moments of real emotional difficulty. Posts often involve:
- Questions and uncertainty about symptoms
- Carer fatigue
- Medication concerns
- Relationship pressures
- Loneliness and isolation
- Emotional distress and vulnerability
Moderating these conversations isn’t simply about keeping to guidelines, it requires compassion, good judgement, signposting to care and support, and the ability to diffuse tension without undermining the honesty of the community.
Freya explains:
“It’s a space where people feel safe enough to share things they might not tell friends or family. Managing that responsibly is a serious task.”
Complexity on both the forum and Facebook
Moderation challenges varied across platforms:
- On the forum, with over 16k users, conversations are long-form and nuanced, with members sharing deeply personal stories or detailed questions that require thoughtful replies.
- On Facebook, with 10,000 group members, posts move rapidly, with many requiring support and safeguarding responses.
Parkinson’s UK needed moderators who were confident in both environments and able to maintain the same tone, care, and sensitivity wherever they were responding.
What Parkinson’s UK Needed
The charity needed these three essentials:
- Consistency
- Responses that aligned with their tone of voice
- Reliable coverage across busy periods, evenings and weekends
- Responses that aligned with their tone of voice
- Emotional intelligence
- Moderators able to recognise vulnerability and respond gently
- Confidence in managing distress without being clinical or cold
- Moderators able to recognise vulnerability and respond gently
- Professionalism
- Clear documentation
- Escalation processes
- Respect for community rules and safeguarding standards
- Clear documentation
Freya said: “We needed people who could step into our world and feel like part of our team – and Social AF just got it, right from the off”.
How Social AF Delivered
1. Seamless Integration with Parkinson’s UK
Social AF’s moderators adopted the charity’s systems, workflows, and tone of voice guidelines, becoming an extension of the internal team rather than an outsourced service.
Freya said:
“It never felt like a handover – more like we had suddenly expanded our team with people who already cared.”
2. Moderation Across Two Distinct Platforms
Social AF provided:
- Full forum moderation, including:
- Reviewing all new posts
- Supporting emotional disclosures
- Spotting patterns or recurring themes worth escalating
- Ensuring community guidelines were followed without being heavy-handed
- Reviewing all new posts
- Facebook group moderation, including:
- Approving and reviewing posts
- Responding to comments
- Reassuring members when discussions got heated
- Signposting to appropriate resources
- Approving and reviewing posts
3. Human-first signposting and compassionate responses
Social AF’s trained moderators use soft, reassuring language – responding promptly but always with genuine warmth. This was especially crucial when members shared details about:
- Mental health struggles
- Stress or burnout as carers
- Fears around the future
- Isolation
- Changes in symptoms
The moderation team used de-escalation techniques and always sought to empower members to seek help rather than shutting them down.
4. Safety, escalation, and safeguarding
Social AF implemented clear processes for:
- Flagging urgent wellbeing concerns
- Notifying the Parkinson’s UK team of higher-risk posts
- Recording issues that required patterns or follow-up
- Ensuring vulnerable individuals received the right guidance
This helped Parkinson’s UK stay informed without overwhelming staff with daily moderation demands.
5. Deep empathy at the heart of every interaction
Bernard, one of Social AF’s moderators, sums up the approach:
“Every message is a chance for us to make someone feel seen, supported, and less alone. We really care about every interaction.”
The Impact
1. A safer, calmer, more supported community
With Social AF in place, the charity saw:
- An increase in response rates
- Fewer escalated conflicts
- More accurate signposting
- Increased trust from long-term members
- A more welcoming environment for everyone affected with Parkinson’s
2. A more consistent experience across platforms
Whether someone posted on the forum or Facebook, they received:
- The same warmth
- The same professionalism
- The same sense of being heard
This consistency helped strengthen the community identity as a whole.
3. Reduced pressure on Parkinson’s UK staff
Freya shared that having Social AF onboard allowed internal teams to:
- Focus on strategic engagement rather than daily fire-fighting
- Spend more time on content creation and member support
- Respond to higher-level issues without worrying about routine moderation tasks
4. A trusted partnership, not just a service
Freya describes Social AF as “collaborative, reliable, and genuinely caring.”
“They don’t just moderate – they hold space for our community in the same way we would. They match our tone, understand our members, and bring a sense of calm. The partnership has been amazing, transformative.”
Conclusion
For a community as emotionally complex and deeply connected as Parkinson’s UK’s, expert moderation isn’t optional, it’s essential.
Social AF’s partnership with Parkinson’s UK has ensured that thousands of people living with Parkinson’s, and those caring for them, have a safe, supportive environment where they can share openly, find solidarity, and access guidance when they need it most.