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Thames Hospice, Maidenhead (On-site)
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University of East Anglia, Norwich, Norfolk (Hybrid)
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Mind Tower Hamlets Newham and Redbridge (MindTHNR), E3 4DA (On-site)
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Page 4 of 5
Coventry, West Midlands (On-site)
£23,132.20 pro rata
Part-time (3 days a week - flexibility needed)
Permanent

Actively Interviewing

This organisation is scheduling interviews as applications come in. They're ready to hire as soon as they find the right person. Don't miss your opportunity, apply now!

Job description

About MDSC

Muscular Dystrophy Support Centre (MDSC) exists to ensure that people affected by muscle-wasting conditions are not just supported, but heard, connected and empowered. We are a growing, values-led charity rooted in lived experience, community connection and practical impact.

This role sits at the heart of that mission.

The Role

This is not a tick-box participation post.

As our Service User Participation Worker, you’ll make sure service-user voice actively shapes our culture, communications and service design. You’ll build community connection, run meaningful participation activities, and capture powerful lived-experience insight that directly influences decision-making, storytelling and strategy.

You’ll work closely with colleagues across communications, therapy, fundraising and leadership — translating real experiences into real change.

What You’ll Be Doing

Building community & connection

  • Designing and delivering inclusive activities, groups and events
  • Creating both in-person and digital opportunities for peer support
  • Supporting service users to become ambassadors and contributors

Leading meaningful participation

  • Developing and embedding a clear participation and co-production model
  • Facilitating forums, feedback sessions and co-production activities
  • Making sure insight feeds directly into communications and service improvement

Capturing lived experience

  • Safely and ethically collecting stories, feedback and content
  • Working with the Communications team to create authentic, non-tokenistic content
  • Ensuring consent, safeguarding and dignity are always front and centre

Advocacy & individual voice

  • Supporting service users to share experiences and influence decisions
  • Acting as a trusted point of contact
  • Escalating safeguarding concerns where appropriate

Learning & impact

  • Tracking engagement and participation outcomes
  • Producing insight summaries and reports
  • Closing the loop — showing people how their voice leads to change

About You

You’ll be organised, empathetic and confident working with people from all walks of life. You’re comfortable facilitating groups, handling sensitive information and balancing structure with warmth. You believe participation should be meaningful, not performative.

Experience of working with disabled people, health settings, charities or co-production models is an advantage — but mindset matters just as much as background.

What We Offer

  • A role with genuine influence and visibility
  • A supportive, values-driven team
  • Strong commitment to training and development
  • Employee Assistance Programme
  • Pension contribution
  • Generous annual leave (pro rata)

Safeguarding

This role is subject to a probationary period and an enhanced Disclosure and Barring Service (DBS) check.

Application resources
Posted by
Muscular Dystrophy Support Centre View profile Organisation type Registered Charity Company size 21 - 50

We work together to support people affected Muscular Dystrophy, creating an environment where full potential and optimal well-being can be achieved, t

Muscular Dystrophy Support Centre logo Play
Services-1-1140x475.pngScreenshot 2025-05-30 at 7.25.58 PM.png
Posted on: 05 January 2026
Closing date: 03 February 2026 at 12:17
Tags: Advice / Information, Communications, Advocacy, Culture, Engagement / Outreach