Functional Neurological Disorder (FND) Survey
What we set out to achieve
FND Lincs, NHS Lincolnshire ICB and system partners are working together to develop a Functional Neurological Disorder (FND) strategy for Lincolnshire.
We wanted to hear directly from people living with FND in Lincolnshire. Many told us it’s hard to get the right support after diagnosis, so this survey was designed to help us to understand real experiences of how they were diagnosed with FND and the way they engaged with services.
What we did
In October 2025, we launched a county-wide survey and received 127 responses from people with lived experience of FND. Here’s how we reached people:
• Survey questions were co-produced by FND Lincs in partnership with NHS Lincolnshire Integrated Care Board (ICB) and system partners.
• Digital posters with QR codes and links to the survey sent to local NHS providers, community groups, patient participation groups (PPGs), carers service, ASC and neighbourhood leads.
• FND Lincs supported the ‘Fit for the Future’ event in Spalding to raise awareness of the survey and FND.
• Via the FND Lincs newsletter produced by our patient representative and the ‘The Contributor’, the ICB Engagement team bulletin reaching a wide and varied audience across Lincolnshire.
• Attended the FND Lincs support group to share the results of the survey, highlighting insights and patient stories as well as gathering additional feedback.
• Patient rep with lived experience of FND attended the first ICB Cluster Board meeting to share experiences of FND and update on involvement taken place/plans going forward.
We didn’t just collect numbers — we listened to stories, concerns, and suggestions.
What you told us
Your feedback gave us insight into the challenges and experiences of living with FND in Lincolnshire:
Key findings:
• Over 70% of respondents found it difficult or very difficult to obtain an FND diagnosis
• Nearly two-thirds were dissatisfied with the speed of diagnosis
• Three quarters did not receive information about FND or symptom management at the point of diagnosis
• Many people reported multiple GP visits, emergency attendances, and unnecessary appointments before being diagnosed
• Almost 60% travelled outside Lincolnshire for diagnosis or treatment, often at significant personal cost
What you said needs to change:
• Educate professionals and raise awareness of FND
• Create a clear FND pathway with faster access and follow-up care
• Provide clear patient information and invest in more resources
Despite these challenges, many respondents shared positive experiences where they felt listened to, believed, and supported by knowledgeable professionals—showing what good care looks like.
The difference it’s made
So far, your feedback is already making a difference:
• Your insights have been shared with NHS Lincolnshire ICB and system partners to inform a review of the current FND pathway
• Feedback is helping us to develop local FND strategy that reflects real experiences.
• The survey results are shaping the next phase of engagement to drive meaningful change
This programme of work is ongoing so be sure to check back for more updates as we move forward!
What’s next
• Creating helpful resources
FND Lincs has received £5,000 from Charitable Funding to co-create educational materials, patient information leaflets, and FAQs – designed with people who have lived experience of FND.
• Launch of Phase 2 survey – early 2026
We’ll be launching a new survey to gather your views on a proposed FND service model for Lincolnshire.
• Sharing and learning together
We’ll be attending the annual FND Awareness Conference to share best practice, learn from others and present the draft Lincolnshire FND Strategy.