Disabled people shaping better systems
Pathfinders Neuromuscular Alliance campaigns to improve the systems that shape disabled people’s lives. We combine lived experience, research, advocacy, innovation and partnership-building to challenge exclusion and develop practical solutions that improve participation, independence and quality of life.
Our work is rooted in the belief that disabled people should not simply be consulted by systems, but involved in designing, testing and improving them. We therefore combine systems influence with practical innovation, community leadership and co-designed projects that demonstrate how systems can work differently.
Our work focuses on issues including:
- social care and independent living
- accessibility and inclusive design
- healthcare and hospital access
- equipment and assistive technology
- employment and financial security
- transport and public space accessibility
- community participation and peer leadership
Our approach
Too often, disabled people are asked for feedback only after decisions have already been made. We believe meaningful co-production means disabled people helping shape priorities, design approaches, test ideas, evaluate outcomes and refine solutions from the beginning.
Our approach combines:
- Systems change – identifying where systems are failing and targeting the policies, practices and incentives behind those failures.
- Partnership-building – bringing together disabled people, businesses, policymakers, practitioners and researchers around shared goals and practical change.
- Innovation and testing – developing pilots, resources and new approaches that demonstrate how systems can work differently.
- Community leadership – supporting disabled people to build confidence, influence decisions and become advocates for change.
- Research and evidence – combining lived experience with practical evidence to strengthen campaigns and shape better systems.
We believe disabled people are not simply users of services, but contributors whose insight can help create fairer, more effective and more sustainable systems.
Current campaigns and systems-change work
Social Care & Independent Living
Social care is essential infrastructure that enables disabled people to participate in society, maintain relationships, work, study and live independently. Yet too many people experience inadequate support, exhausting battles for care and systems that focus on crisis rather than prevention.
Our social care work combines campaigning, research and innovation. We are currently involved in NIHR-funded research exploring innovative approaches to social care, bringing together disabled people and practitioners to understand where systems are failing and identify better models of support.
We have also contributed evidence and lived experience to national discussions on social care reform, including engagement with the Casey Commission.
Our work focuses on:
- improving choice, control and independence
- strengthening co-production and lived-experience leadership
- supporting better transitions into adulthood
- improving access to equipment and practical support
- identifying more sustainable and preventative approaches
- ensuring disabled people are involved in designing future systems
Read our Social Care report
Many of our community use direct payments to employ our own Personal Assistants (PAs) and we have a unique perspective on challenges and solutions to the social care crisis.
Please find below our latest report, Bare Minimum Care, which highlights the challenges facing people living with neuromuscular conditions in accessing adequate adult social care. This report is based on evidence gathered through a survey of our community conducted between September and November 2025.
The findings demonstrate the real-life impact that pressures within the social care system are having on individuals and families, including difficulties in securing care packages, recruiting PAs, and maintaining independence and quality of life.
Thank you to everyone who contributed to this vital piece of work.
Please feel free to share this report with your local MP and with others in your networks.
Click here to access our Social Care Report:
Hoists in Hotels & Inclusive Design
Our hoists in hotels campaign highlights the barriers many disabled people face when travelling due to a lack of accessible changing and transfer equipment.
However, this work is about more than awareness alone. We are seeking to understand the systems and incentives that influence whether accessibility is included in hotel design and planning. Through this work we identified key drivers including leadership commitment to inclusion and local planning requirements.
As a result, our approach includes:
- engaging with planners and local authorities
- building relationships with hospitality providers
- working with accessibility and inclusivity networks
- promoting the commercial and social value of accessibility
- encouraging accessibility to be built in at design stage rather than retrofitted later
We believe inclusive design benefits everyone and helps businesses access underserved communities while creating fairer and more welcoming environments.
Read our report
Read our Hoists in Hotels Report:
If you have a great idea for a campaign, or want to get involved in our campaigning, drop us an email at info@pathfindersalliance.org.uk.