Who We Are
FNDLincs is a community-led organisation formed by people with lived experience of Functional Neurological Disorder (FND). We began our journey in 2025 following a local health event that highlighted the need for more FND awareness, support and help in Lincolnshire. We work in partnership with NHS Lincolnshire Integrated Care Board (ICB), local authorities, Primary and Secondary Care Services and Charity and Community Organisations.
FNDLincs provides a safe place for families in Lincolnshire to connect with others who understand them and their needs. We are led by volunteers with lived experience of FND and have already made a difference to many peoples lives.
We welcome the involvement of professionals and other agencies involved in delivering care and support to people in Lincolnshire and believe that the only way we can bring about the improvements needed is by working in collaboration and being a good partner in the process.
Our Aims
FND is still not widely understood, so we organise events and share information to improve both public and professional awareness in Lincolnshire. By raising understanding, we aim to challenge the misconceptions that FND is rare or “all in someone’s head.” FND is a real neurological condition, and greater awareness helps ensure faster diagnosis, more appropriate support, and better outcomes for those affected.
Our goal is to bring together people with FND and their families. Through online groups and local meet-ups, we create a supportive community where individuals can share experiences, coping strategies, and encouragement. No one should have to navigate FND alone. FND Lincs exists to connect people living with the condition and to build a strong network of peer support across the county.
A key purpose of FNDLincs is to work closely with health and social care system partners to improve the entire care pathway for people with FND. We partner with the NHS and other organisations to identify gaps in local services and propose practical solutions. Many people with FND experience long waits for diagnosis or struggle to access appropriate treatment, and we aim to change that.
By ensuring that the voices of people with lived experience are included in decision-making, FNDLincs helps shape how services are designed and delivered. Our members sit on local ICB working groups focused on improving FND services—from mapping what support currently exists to helping develop training for professionals. In doing so, we play an active role in driving real, positive change for FND patients across Lincolnshire.
We want to empower people with FND to better understand and manage their condition. This includes providing reliable information about FND, available treatments, and practical self-management strategies such as pacing, home physiotherapy exercises, and stress management. We also signpost trusted resources—like neurosymptoms.org, FND Hope UK, and FND Action—for further learning and support.
By educating both the public and healthcare professionals, we aim to reduce stigma and increase empathy for those living with FND.
Co-production is key to ensuring that future services are designed to meet peoples needs. FNDLincs wants to be a valuable partner that helps shape the changes required to bring about improvements. To achieve this we need to work in partnership with all stakeholders.
“FNDLincs is a community group led by people with lived experience of FND. Our aim is to raise awareness, connect people, and improve local support and services in Lincolnshire.”
Incidence of FND in Lincolnshire
A systematic review* published in December 2024 estimates the minimum prevalence of FND to be between 80 and 140 per 100,000 people. This results in an estimate that there are about 600 to 1,100 people living with FND in Lincolnshire.
The incidence (number of new cases per year) of FND has been estimated to be between 4 and 12 per 100,000 people per year. This would equate to about 30 to 93 new cases per year in Lincolnshire.
Lincolnshire ICB is currently working with system partners across Lincolnshire to improve the coding of FND so that we can be more accurate in identifying how may people have FND in Lincolnshire.
Healthwatch Lincolnshire ran a survey to hear about local people’s experiences of getting care for neurological conditions. The aim was to make sure patients’ views are included when planning future services. The report shares what is working well and what could be improved in areas such as access, diagnosis, treatment, and support. These findings will help Lincolnshire’s health and care system review and improve neurology services to better meet residents’ needs.
You can read the full report here
Key Findings
58% (205) were diagnosed correctly first time. For 46% (153), getting a diagnosis took more than 18 months. Many patients reported feeling unheard and dismissed by healthcare providers. A lack of knowledge and empathy around certain conditions, like fibromyalgia and FND, led to delayed diagnoses which impacted patients’ lives. Frustrated with the lack of support, some sought private diagnoses.
29% (108) were waiting for additional tests, treatments or diagnosis. Respondents had often been waiting for months, with little communication or support in the meantime.
71% (263) took medication for their neurological condition and 71% (88 of these) had faced challenges getting medications that worked for them. Common challenges included side effects of medications, finding medications and dosages that helped manage symptoms, shortages and needing specialists’ input to change dosages. 47% (173) had been offered or received treatment other than medication. Signposting to support and referrals to other services appeared to be inconsistent.
Areas for Improvement
- Listen to patients and show understanding.
- Increase healthcare professionals' knowledge of neurological conditions, including recognising fibromyalgia, FND and ME/CFS as real conditions.
- Provide clear information for patients on diagnosis, prognosis, and management.
- Establish local specialist neurological centres, hubs, or clinics.
- Improve access to pain clinics and better pain management strategies.
- Offer holistic support, recognising that individuals are affected in different ways.
- Develop local support groups, including options outside standard working hours.
- Ensure joined-up care with coordinated services.
- Reduce waiting times for specialist support and offer interim support while patients wait.
If you or any of your family are living with FND then please get in touch
We are stronger together and by sharing our stories we can help to make a bigger difference
You can get in touch by clicking here