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Functional Neurological Disorder (FND) Support Guide
Functional Neurological Disorder (FND) Support Guide
PART 1: For Professional Home Help Carers
PART 1: For Professional Home Help Carers
Understanding FND
Understanding FND
Functional Neurological Disorder (FND) is a condition where a person experiences real neurological symptoms (such as seizures, paralysis, weakness, speech difficulties) without a structural brain injury like stroke or multiple sclerosis.
It is recognized by medical professionals and described in the DSM-5.
Causes can include:
Physical injury or trauma
Infections
Psychological stress or trauma
Major life changes
Chronic illnesses (e.g., CRPS, CSS)
Recognizing Warning Signs
Recognizing Warning Signs
Patients often show subtle signs before a major FND episode. Watch for:
Changes in skin color (paleness, flushing)
Aura symptoms (feeling dizzy, detached, tingling)
Speech issues (stuttering, word confusion, mutism)
Movement changes (jerking, limb twisting, unusual walking, sudden weakness)
Important: Every patient’s symptoms are unique. Get to know their personal patterns.
Communication During an Episode
Communication During an Episode
Stay calm and speak slowly.
Allow extra time for the person to speak or respond.
Use yes/no questions if speech is difficult.
If they experience brain fog, repeat important information clearly.
Using the FND Response Code
Using the FND Response Code
(Adapted from provided FND Response Code image.)
Code
Symptoms
What to Do
GREEN
(Self-Manageable)
Mild, familiar symptoms (usual tremors, fatigue, dissociation) that settle with rest.
Use grounding techniques, relaxation, hydration, and pacing. Keep to their normal symptom plan.
AMBER
(Needs Help)
Symptoms worse or lasting longer, pain/discomfort not easing, emotional distress.
Contact GP/FND specialist, reduce activities, seek support from carers/family, adjust treatment if advised.
RED
(Urgent)
Sudden severe weakness, paralysis, breathing problems, intense seizures, personal safety risks.
Call emergency services (111/999/911). Ensure a safe environment, inform paramedics about FND diagnosis.
Ambulance Guidelines
Ambulance Guidelines
CALL an ambulance if:
Symptoms are more intense or different from the patient's usual episodes.
Consciousness is lost or breathing difficulties appear.
Seizures (non-epileptic or otherwise) last longer than 5 minutes without stopping.
Severe injury has occurred.
You are in doubt about whether it's an FND attack or a stroke/heart event.
PART 2: For Friends, Family, and Supporters
PART 2: For Friends, Family, and Supporters
How to Help Daily
How to Help Daily
Learn their triggers (stress, tiredness, loud noises, illness).
Help them pace activities to prevent fatigue.
Be patient with speech difficulties — don’t rush or talk over them.
Understand that FND attacks are real, not made-up or "all in their head."
Recognizing an Episode
Recognizing an Episode
Watch for color changes, muscle jerks, frozen limbs, gait changes.
Be aware of brain fog, confusion, or mutism as warning signs.
Stay nearby but don't overwhelm them during symptoms.
During an Attack
During an Attack
Stay calm — your energy helps keep them calm.
Protect their safety (move sharp objects, cushion falls).
Use simple language to reassure ("I'm here, you're safe").
Time the episode — if it goes over 5 minutes, consider calling for medical help.
When to Call for Help
When to Call for Help
Follow the FND Response Code:
Green = Support and monitor
Amber = Contact health professionals if it doesn’t ease
Red = Call 999/911
Additional Important Notes
Additional Important Notes
FND can look like a stroke or seizure — paramedics may run tests to rule these out.
Co-morbidities like CRPS, CSS, PTSD can trigger or worsen episodes.
Always mention existing diagnoses (FND, CRPS, CSS) to emergency teams.
References:
References:
American Psychiatric Association. (2013). Diagnostic and Statistical Manual of Mental Disorders (5th ed.; DSM-5).
Stone, J., Carson, A., & Sharpe, M. (2005). Functional symptoms in neurology: management and prognosis. Journal of Neurology, Neurosurgery & Psychiatry.
Nicholson, T. R., Aybek, S., & Edwards, M. J. (2020). A systemic review of management of functional neurological disorder. Neuropsychiatric Disease and Treatment.
O'Sullivan, S. (2015). It's All in Your Head: True Stories of Imaginary Illness.
Physiopedia contributors. Functional Neurological Disorder (FND). Physiopedia.
UPDATED APRIL 2025
TEAM CARE GUIDE - print and hand out to care team.
TEAM CARE GUIDE - print and hand out to care team.
FND Care Team Guide
FND Care Team Guide
My Name: _______________________
Pronouns: ______________________
Diagnoses (Confirmed or Suspected):
Functional Neurological Disorder (FND)
[Insert relevant comorbidities: CRPS, POTS, CSS, IBS, etc.]
Key Symptoms I Experience:
Motor: [e.g. limb weakness, tremors, non-epileptic seizures]
Sensory: [e.g. paresthesia, temperature dysregulation]
Cognitive: [e.g. brain fog, dissociation]
Autonomic: [e.g. dizziness, HR fluctuations, GI distress]
Pain: [e.g. CRPS, fibromyalgia, chronic fatigue]
My Baseline:
Average body temperature: ~35.5°C
Typical pain/fatigue level: __/10
Mobility: [use of aids, wheelchair part-time, etc.]
Communication Notes:
May have speech difficulties or need extra time
Can dissociate under stress; grounding is helpful
Prefer written/visual aids when possible
Emergency Notes:
Functional seizures are non-epileptic; do NOT require emergency meds unless injury
Do NOT restrain or place objects in mouth
Let episode pass safely; orient gently after
Contact my emergency contact only if injury, new symptoms, or prolonged episode
Current Treatment Team:
Neurologist: ___________________________
Psychologist/Therapist: ________________
Physiotherapist: _______________________
GP/Primary Care: ______________________
Other: ________________________________
Treatments That Help Me:
CBT/ACT, somatic tracking
Neurophysiotherapy
Gentle movement and pacing
[List medications or aids: compression gear, hydration tools, etc.]
Additional Notes:
FND symptoms are real and involuntary.
Symptoms fluctuate day to day.
Supportive care, clear communication, and validation improve outcomes.
Keep this document updated and share with all providers as needed.
FND RESPONSE CODE
FND RESPONSE CODE
USE THIS CODE AS A GUIDE ONLY!
IN EMERGENCIES, DIAL 111
🟢 GREEN – Self-Manageable Symptoms
✅ Mild symptoms that are familiar and manageable
✅ Usual tremors, weakness, or dissociation that settle with rest
✅ Fatigue, brain fog, or mild pain that improves with pacing
✅ No significant change in symptoms
What to do:
Use grounding techniques, relaxation, and pacing
Stick to your usual symptom management plan
Maintain hydration, nutrition, and gentle movement
Engage in calming activities (breathing exercises, mindfulness, distraction techniques)
🟡 AMBER – Needs Help
⚠️ Symptoms are worsening or lasting longer than usual
⚠️ Increased weakness, tremors, or dissociation affecting daily life
⚠️ Pain or discomfort that does not improve
⚠️ Increased emotional distress, anxiety, or difficulty coping
What to do:
Contact your GP, for a referral to a FND specialist for advice
Reduce activities and prioritize rest
Seek support from a caregiver, friend, or family member
Adjust medications or treatment plan under medical guidance
If symptoms persist or worsen, consider urgent care
🔴 RED – Urgent Care / Hospital
🚨 Sudden severe weakness, paralysis, or loss of movement
🚨 Intense or prolonged seizures / non-epileptic attacks (NEAD)
🚨 Severe breathing difficulties or loss of consciousness
🚨 Symptoms are significantly worse or unusual for you
🚨 Risk to personal safety (e.g., falls, injuries, self-harm)
What to do:
Call emergency services (111) or go to the hospital
Ensure a safe environment if experiencing seizures or dissociation
Inform medical staff about your FND diagnosis to receive appropriate care
Have an emergency plan in place with family, caregivers, or health professionals
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