Improving Functional Neurological Disorder (FND) services together

What we set out to achieve

We set out to understand what really makes a difference when designing future Functional Neurological Disorder (FND) services in Lincolnshire.

Building on what we heard in 2025 about diagnosis and access to support, this phase focused on:
• What people feel needs to improve across FND services
• What good, joined up care should look like in practice
• Where current gaps and barriers exist
• What would most improve people’s quality of life

This feedback will help shape a new Lincolnshire FND Strategy, rooted in real experiences and priorities.

What we did

Between January and March 2026, we ran a countywide survey for:
• People living with FND
• Family members and carers
• NHS and partner staff
In total, 130 responses were received (95 public, 35 staff).

The survey was:
• Promoted through NHS, partner and community networks

• Shared via newsletters, stakeholder bulletins and social media
• Supported by FND Lincs and patient representatives, helping us reach people with lived experience across the county

What you told us

You told us clearly what living with FND in Lincolnshire feels like — and what needs to change.

Many people said there is no clear pathway once they receive a diagnosis. Too often, people are left unsure about what happens next, who is responsible for their care, or where to turn for help.
Care frequently feels fragmented, with services not working well together. This means people and families are often left coordinating appointments, repeating their story, and trying to “join the dots” themselves.

A strong message was around limited understanding of FND. People described how gaps in knowledge and training can lead to delays, confusion, and sometimes being dismissed or not believed. Stigma and disbelief were shared as real and ongoing experiences, which can make seeking help even harder.

You also told us about the impact of long waits and access barriers, particularly for diagnosis, specialist care and rehabilitation. For many, the lack of local services means travelling out of county or going without the support they need.

Alongside these challenges, you were clear about what would make the biggest difference:
clear and joined up pathways, professionals who understand FND, compassionate and stigma free care, and support that is available closer to home.

The difference it’s made

Your feedback is already shaping the future of FND services in Lincolnshire.
What you shared will:
• Help set clear priorities for the Lincolnshire FND Strategy
• Shine a light on where current service gaps are and where people are being missed
• Provided strong, real world evidence for the need for:
o A clear and consistent FND pathway
o A dedicated, joined up service model
o Better training and support for the workforce
o Stronger coordination and communication across services
This insight is now being used to inform system discussions, planning and decision making, ensuring future work is grounded in lived experience.

What’s next?

We’re committed to turning what we’ve heard into real change.

Next steps include:
• Using this feedback to develop a FND Strategy Lincolnshire
• Ongoing work with partners, clinicians and people with FND to co design improvements
This programme of work is ongoing – please check back for further updates.