Using Your Safety Plan and Deciding When to Get Urgent Help

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For the Person With FND
For Family, Friends, and Other Supporters
For Clinicians and the Care Team
Research and Sources —

For the Person With FND

The plan starts before anything happens

You’re about to visit a park you’ve never been to before.

The weather’s nice. You’ve brought what you need, and you’re looking forward to getting outside.

But there’s something worth checking.

What if you have an episode while you’re there?

Maybe you sometimes need a wheelchair after an episode. Part of the trail looks pretty rough, and you’re not sure a wheelchair could get through.

Hmm. That might be a problem.

You and whoever’s with you could check the route before setting off. Perhaps there’s another path that would make getting help easier.

There you go. You’ve just used your safety plan.

And you haven’t even started walking yet!

Safety planning isn’t only about what happens during an episode. It’s also about preparing for situations where your symptoms could make things difficult.

Little checks can make a difference

My wife and I have developed a habit of checking unfamiliar situations before we get too far into them.

For example, before getting out of the vehicle somewhere busy, we’ll check whether I’ve got my earplugs in.

My hyperacusis makes certain sounds painful and these easily trigger functional seizures, so having those earplugs ready can make a real difference.

When we’re going somewhere new, we also think about how accessible it is and what we would do if I needed help.

It’s become a fairly ordinary part of how we do things.

Your own checks might be completely different.

Perhaps you need to know whether there’s somewhere to sit. Maybe you’re wondering about stairs, noise, lighting or how easily you could leave.

The aim is to make useful decisions ahead of time, rather than spending the whole outing worrying about what might happen.

After all, the idea is to enjoy the park, too!

When an episode begins

Let’s imagine you’re enjoying that walk when you notice a familiar warning sign.

For some people, an episode begins without warning. Others have a little time to respond.

If you recognise a warning, you might be able to signal someone or move to a safer place.

That’s something I’ve learned to do with my wife.

When I notice a warning that one of my functional seizures may be starting, I try to let her know.

If there’s time and it’s safe, she’ll help me find somewhere to sit.

It sounds pretty simple, but there’s a lot of experience behind those few moments.

We’ve learned what works in some situations, what makes things harder, and when we need another approach.

Sometimes the safest thing is to stay where you are and have someone make the surroundings safer.

During seizure-like episodes, people helping should protect against nearby hazards without restraining movements or putting anything in the person’s mouth.

Your own medically agreed plan can guide the response to familiar episodes.

The person helping you needs to be safe, too

Here’s something my wife and I learned the hard way.

Helping someone move when their body isn’t cooperating can be physically demanding.

Over the years, my wife has injured herself repeatedly while helping me transfer or move during and after episodes.

Those injuries have become a serious medical concern for her.

So we’ve had to think carefully about how we help each other.

For example, we’ve developed preferences about where I place my hands when she helps me stand or move.

That matters to her. Her comfort, balance and physical safety are part of the situation.

And when my legs are still weak during recovery, something as ordinary as getting down a staircase can become a much bigger challenge.

We’ve learned that we need to talk about what each of us can manage.

Helping someone should never mean that the helper has to risk serious injury.

Our arrangements are personal examples, rather than instructions for lifting, transferring or helping someone on stairs. Those activities can be dangerous when balance or leg control is unreliable. An occupational therapist or physiotherapist can help assess safe methods, equipment and alternatives.

Sometimes that may mean getting additional help, choosing another route or allowing more time.

And the conversation needs to go both ways.

Perhaps your supporter has a sore back, an injury or is simply exhausted.

Maybe they feel uncomfortable with something you’ve previously asked them to do.

That’s useful information.

You can work together to find another approach, including involving your healthcare team.

A good safety plan should consider what the person with FND needs and what their supporter can safely provide.

Does the situation still fit your plan?

Now imagine that you’ve reached somewhere safe during your familiar episode.

Your supporter knows what usually happens and what you’ve agreed helps.

Perhaps they give you space, reduce unnecessary noise or allow you time to recover.

That’s your plan doing its job.

But what if something different happens?

Maybe you fall and hit your head.

The episode itself might be familiar, but the injury is a new concern.

Or perhaps your symptoms are very different from the pattern your clinicians have assessed.

Those changes may need another medical look.

Your plan can explain which situations your care team has agreed are manageable using the familiar response, and which require additional help.

Doctors sometimes call these decision points escalation thresholds.

That’s a fancy way of saying, “This is when we need more help.”

Sometimes that means contacting your regular healthcare team.

Other situations require urgent or emergency care.

Severe breathing difficulty, a serious injury, or sudden signs of a possible stroke need emergency attention.

If there’s immediate danger or a possible medical emergency, seek emergency care right away.

Your plan is there to guide care, rather than delay it.

The Reference Library explains an individualized functional-seizure safety plan. A first or uncertain seizure-like event, abnormal breathing, or prolonged or repeated events without usual recovery need urgent medical help. If no usable plan is available, seek urgent advice rather than assume the event is familiar. [1][2][3]

Recovery is part of the experience

For some people, the most noticeable symptoms of an episode finish before they’ve fully recovered.

One person in an FND community described it this way:

“Even when the seizure is done, Im still somewhat-catatonic for at least a few hours …”

Figure 1. Individual lived experience: one person’s description of recovery in an FND community comment. Original wording retained; an omission is marked. [11]

The person used catatonic to describe their experience. It isn’t a confirmed medical diagnosis in this account.

Your recovery might look quite different.

Perhaps you’re exhausted. Maybe your speech is still difficult, or your legs aren’t working as well as usual.

This is another time when your safety plan can help.

If your care team has assessed your usual recovery pattern, the plan can explain what support is appropriate.

And this is where checking in with your supporter matters again.

Perhaps helping you get somewhere comfortable would be physically difficult for them.

Is there another safe option?

Would equipment or additional assistance make things easier?

Recovery should be manageable for everyone involved.

New or unexpectedly prolonged reduced responsiveness needs prompt medical attention, and ongoing unresponsiveness or immediate danger requires emergency help.

When something doesn’t work as expected

Even a carefully prepared plan can run into problems.

Maybe you discover that a wheelchair can’t get through somewhere you expected it to.

Perhaps your supporter isn’t available, or a particular way of helping has become too difficult.

Those experiences can tell you where the plan needs adjusting.

You can bring them to the relevant clinician or therapist and explore another solution.

Sometimes the answer is a small change.

Other times, it might involve different equipment, additional support or a change to your surroundings.

A safety plan is something you can improve as you learn what works in real life.

Something to think about

Think about a place you visit regularly.

Is there anything you’ve already changed to make it safer or easier to manage?

Perhaps you’ve found somewhere comfortable to sit, arranged accessible transport or learned to carry something useful.

Now consider someone who helps you.

Do you both feel comfortable with the arrangements you’ve made?

Is there something that would make helping safer or easier for them?

These can be valuable conversations to have when you’re both feeling up to them.

One small thing you can do

The next time you’re preparing to go somewhere, think about one practical safety question.

For example:

“If I needed help here, what would make things easier?”

You might already know the answer.

Perhaps you need to bring something, choose a more accessible route or have a quick conversation with someone accompanying you.

And if you’ve already worked out a solution, there’s no need to start again.

You’ve been using your safety plan.

The goal is to help everyone involved feel more prepared, so there’s more room to enjoy everyday life.

Coming up next

We’ve now looked at recognising important medical changes, preparing for familiar difficulties, and putting those preparations to use.

Next, we’ll explore functional seizures and other episodic symptoms in greater detail.

We’ll look at how these episodes can appear, how clinicians assess them, and what kinds of care and support may help.

The lessons that follow will explore other FND symptoms and their particular needs, too.

Optional crossword

Revisit the lesson with a crossword. The easy edition includes a word bank.

Optional colouring activity

Open the Lesson 14 colouring PDF (new tab), or browse the colouring collection.

Open the Lesson 14 module recap colouring PDF (new tab), or browse the colouring collection.

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For the Person With FND
For Family, Friends, and Other Supporters
For Clinicians and the Care Team
Research and Sources —

For Family, Friends, and Other Supporters

When helping someone make a decision gets complicated

It’s Saturday morning.

Someone you care about has been having a difficult week with their FND symptoms.

Then their phone rings.

A friend wants to come over for a visit.

Suddenly, there’s a little excitement in the room. They’ve been looking forward to seeing this friend.

That sounds lovely.

But you’re remembering something.

The last time they had company for a couple of hours, they were exhausted afterwards. Their symptoms became more difficult, and they needed extra help for the rest of the day.

You mention it.

They seem surprised.

“Really? I don’t remember that.”

Now what?

You want them to enjoy themselves. Seeing friends matters.

You’re also wondering how the afternoon might turn out.

This is where supporting someone’s independence and looking after their safety can become a bit of a balancing act.

Helping someone choose

There’s a useful term for what happens next.

It’s called supported decision-making.

It means helping someone understand their choices and possible consequences while keeping them involved in making their own decisions.

Think about that visit.

Perhaps you could explain what happened last time and ask what they’re hoping to enjoy today.

Maybe the most important thing is simply spending some time together.

Would a shorter visit give them that opportunity?

Could their friend come earlier, when they often have more energy?

Or perhaps they’d prefer the full visit, knowing they may need extra recovery time afterwards.

There are several possibilities.

And sometimes the person will choose something you wouldn’t have chosen yourself.

That can be uncomfortable.

But making meaningful choices includes having room to try things, learn from them and occasionally discover that something worked differently than expected.

Being supportive means helping someone make informed choices, rather than trying to make every choice for them.

There’s an important difference between an ordinary decision with manageable risks and a situation involving serious or immediate danger.

We’ll come back to that shortly.

When memory makes the picture harder to see

Remember functional cognitive disorder, or FCD, from earlier lessons?

For some people, thinking and memory difficulties can make decisions especially challenging.

Imagine trying to make a choice when some important pieces of information seem to have disappeared.

Perhaps the person remembers enjoying a visit but has no memory of the difficult recovery afterwards.

Or maybe they remember what happened but struggle to judge how much energy another activity might require today.

They may be working with a different picture of the situation than you are.

They may need information presented in a way that helps them use it.

Their preferences and choices still matter.

FCD can affect memory, concentration and the ability to bring several pieces of information together. A person’s ability to make a particular decision depends on more than a diagnosis. Differences in recall can also reflect fatigue, sleep, other conditions or ordinary memory differences. New cognitive changes deserve medical assessment. [9][10]

As a supporter, you may be able to help by bringing a missing piece of information back into view.

For example:

“The note from the last visit says you were exhausted afterwards. Would you like to plan a shorter visit this time?”

That gives them information they can use.

You could also talk through one choice at a time, offer a written reminder or give them a little more time.

And if your memories differ?

That can be difficult for both people.

Someone who genuinely remembers an event differently may feel confused or even frightened when their account is challenged.

A shared note, when you’ve both agreed to use one, can sometimes help.

The goal is to build understanding together.

Reliable support can help someone hold the bigger picture in mind while leaving their preferences and choices at the centre.

What if they want something you think is risky?

Let’s try another situation.

The person you support wants to go for a walk in a new park.

You know they sometimes need a wheelchair after an episode.

The park looks beautiful, but parts of the trail may be difficult to access.

You could respond by pointing out the problem and offering to explore the route together.

Perhaps there’s an accessible path.

Maybe a shorter walk would be more manageable.

Or you might discover that another park would offer the same enjoyable outing with fewer difficulties.

That’s a useful conversation.

The person still gets to say what matters to them.

And you get to contribute what you know about the practical challenges.

Your own needs matter here as well.

If the route would require you to lift a wheelchair or physically support someone beyond what you can safely manage, that’s an important limitation.

You can help find another way to enjoy the outing without agreeing to assistance that could injure either of you.

Supporting independence works best when the plan is realistic for everyone involved.

Different symptoms can call for different conversations

A walk is one example.

For someone else, the question might be whether they’re ready to have visitors after a difficult morning.

Maybe it’s whether a busy restaurant will be comfortable when noise makes their symptoms worse.

Sometimes the decisions involve medical safety more directly.

Imagine someone who has difficulty swallowing.

They want to enjoy a meal, but swallowing has sometimes been difficult or unsafe.

Food is about more than nutrition. Meals are also about enjoyment, independence and sharing time with other people.

So the aim is to support those parts of life while respecting the person’s swallowing needs.

A speech-language pathologist or another appropriate clinician can assess swallowing and recommend ways to eat and drink more safely when needed.

That advice may involve food texture, positioning, timing or supervision, depending on the person’s individual difficulties. Use the recommendations from their own qualified team; the swallowing assessment reference explains why individual assessment matters. [7]

The supporter can help the person follow an agreed approach while listening to their preferences.

New or worsening swallowing problems deserve medical assessment. Choking with inability to breathe is an emergency.

The same general idea applies across many symptoms.

The person’s goals matter, and the medical information helps everyone understand which choices are safe to offer.

When an episode happens

Now imagine the outing to the park is going well.

Then the person notices a familiar warning that an episode may be starting.

They signal you.

This is where the preparations from the previous lesson become useful.

Perhaps the person can move to a safer place with your assistance.

Or maybe the safest option is to help clear nearby hazards while they remain where they are.

Their individual, clinician-reviewed plan can guide you.

You also know what help you can safely provide.

If moving or transferring them would put either of you at risk, that’s a reason to use another agreed option or get additional assistance.

And throughout the episode, their communication needs and preferences still matter.

Sometimes they may be unable to explain what they want.

That’s when previously agreed instructions can be particularly helpful.

For a familiar event, the plan can guide the response.

If there’s a serious injury, severe breathing difficulty, sudden signs of a possible stroke or another immediate danger, emergency care takes priority.

A new or substantially different event may also need fresh medical assessment.

Your role is to offer the help you can safely provide, recognise when the situation needs more, and use the plan as a guide rather than an absolute rule.

When you’re both running low

Let’s imagine the episode has ended.

The person with FND is exhausted.

Perhaps they’re still having trouble speaking or moving comfortably.

And you?

Maybe you’re tired too.

Perhaps you had to help protect them from injury, arrange assistance or deal with an unexpected change of plans.

Even when everything goes as well as possible, these situations can take a lot out of both people.

This is a good time to remember what we discussed in Lesson 13 about available capacity.

Recovery may involve reducing demands, using agreed supports or changing the rest of the day’s plans.

And if helping the person get somewhere comfortable would put you at risk of injury, additional help or a safer alternative may be needed.

The immediate priority is appropriate care and safety.

There can be time for a conversation about what happened later.

Talking about it when things have settled

Sometimes a difficult experience reveals something useful.

Perhaps the accessible route wasn’t quite as accessible as expected.

Maybe the person wanted a particular kind of help, but you hadn’t realised it.

Or perhaps you discovered that one part of the safety plan was too physically demanding.

Those are things you can discuss together.

One supporter in an online FND community described how helpful it had been to make agreements at a calmer time:

“One thing that really helps us is discussing ground rules for conflict when we’re not actively IN it.”

Figure 2. Individual lived experience: a supporter’s comment in an FND community discussion. [12]

The commenter was describing communication in a relationship where difficult conversations could affect symptoms.

The experience points to something useful beyond that particular situation.

It’s often easier to understand each other’s needs when you’re both able to think, listen and respond comfortably.

Perhaps you can agree on a better way to signal that help is needed.

Maybe a different route, piece of equipment or arrangement would make the next outing safer.

And sometimes a supporter needs to explain that a particular responsibility has become too difficult or unsafe.

That deserves a thoughtful response too.

Your safety plan can change as you learn what works.

Something to think about

Think of a recent decision where you and the person you support saw things differently.

Perhaps it involved an outing, an activity, household responsibilities or a medical concern.

What mattered most to each of you?

Was there information that one person had and the other didn’t?

Could another option have met both people’s needs more comfortably?

There’s no need to find the perfect answer.

Sometimes a little more understanding makes the next conversation easier.

One small thing you can try

The next time you’re discussing an ordinary activity, try beginning with a question:

“What would you most like to get out of this?”

Perhaps the person wants to spend time with a friend, enjoy some fresh air or feel more independent.

Knowing what matters to them can make it easier to explore ways of achieving it.

You can contribute what you’ve noticed, explain your own limits and consider possible alternatives together.

And if the situation involves a serious safety concern, you can bring in the appropriate healthcare professionals.

The aim is to protect the person’s ability to participate in life while making room for the safety and wellbeing of everyone involved.

Coming up next

You’ve now explored three important parts of supporting someone with FND.

You’ve learned how to observe unusual or changing symptoms with greater understanding.

You’ve considered how to develop practical arrangements that respect both people’s needs.

And you’ve looked at how those arrangements can support decisions, independence and safety in everyday life.

Next, we’ll explore functional seizures and other episodic symptoms in more detail, including the different ways they can appear and the care they may require.

The principles you’ve learned here will continue to be useful, whatever combination of symptoms the person you support experiences.

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For the Person With FND
For Family, Friends, and Other Supporters
For Clinicians and the Care Team
Research and Sources —

For Clinicians and the Care Team

The real test happens after the appointment

Return to the young woman from Lessons 12 and 13.

Her diagnoses of FND and POTS are now established. The clinical team has considered rehabilitation, medical management and practical safety needs.

The next challenge begins when she returns to everyday life.

Consider a hypothetical situation.

She wants to attend college. The journey involves walking, waiting for transport and navigating a busy campus.

She has functional weakness and orthostatic symptoms.

Her supporter worries about what could happen if she becomes unable to walk comfortably during the journey.

And attending another medical appointment to discuss the outing might itself involve considerable physical effort, travel, symptom aggravation and recovery time.

Does she need another appointment to decide whether she can attend college? Or should her existing care have prepared her to make that decision?

This scenario is an educational extension of the published FND/POTS case. The college journey and support arrangements are hypothetical, not reported outcomes. [4]

Preparing people to make decisions without the clinician

A medical appointment provides an opportunity to accomplish something that extends far beyond the consultation.

The clinician can establish the relevant medical findings, explain important risks and agree on the circumstances that warrant further assessment.

The patient can describe their priorities, typical difficulties and available support.

Together, they can establish a framework for decisions that will arise later.

For someone with coexisting FND and POTS, this might include understanding the implications of orthostatic symptoms, recognising familiar functional episodes and knowing which changes need medical attention.

Individualized medical instructions remain the responsibility of the appropriate treating clinician.

But the purpose is broader than providing instructions.

Patients need enough understanding and practical support to exercise judgment when no clinician is available.

A useful plan distinguishes between situations that can be managed through agreed everyday strategies, problems that warrant review by a relevant professional, and concerns requiring urgent medical assessment.

That distinction helps prevent both unnecessary medical dependence and delayed care when a genuine concern arises.

The OT and physiotherapist may be closer to the decision

Consider the college journey again.

The medical team has identified the relevant diagnoses and treatment considerations.

Now the patient needs to work out how to participate in daily life.

A physiotherapist may help assess walking, balance, movement strategies, physical limitations and safe mobility.

An occupational therapist may examine the actual activity: travelling, accessing buildings, managing personal belongings, arranging seating and accommodating variable functional capacity.

Their work may overlap.

And for this patient, recommendations must also account for the medical guidance concerning POTS.

The team might help her explore a shorter journey, accessible transport, opportunities to sit or an alternative route.

Perhaps a wheelchair or another mobility aid is appropriate for certain circumstances. That decision would involve individualized assessment of benefits, risks and rehabilitation goals.

The resulting plan should make sense to the person who will use it.

She can then decide whether to undertake an ordinary outing, adjust it or try another approach.

The clinician who helped develop the plan need not participate in each subsequent decision.

Good rehabilitation equips people to apply clinical knowledge independently, within an agreed understanding of their risks and abilities. [5][6]

What if the supporter cannot provide the expected help?

Suppose the patient needs assistance during an outing.

Her supporter has previously been injured while providing physical help.

That changes what is feasible.

A rehabilitation recommendation that assumes unlimited supporter strength or availability may fail precisely when assistance is needed.

The OT or physiotherapist can assess the physical task and explore safer methods, equipment or alternatives.

Sometimes a plan may need to accommodate the possibility that no supporter is available.

This matters especially when someone experiences unpredictable episodes, severe weakness or prolonged recovery.

The patient may have the capacity and desire to participate in an activity, while the assistance required to make it reasonably safe remains unavailable.

Recognising that difference makes it possible to address the actual barrier.

Safety planning should strengthen the patient’s independence without quietly transferring unreasonable risk to someone else.

Supporting decisions when cognition is affected

For some people, functional cognitive disorder adds another challenge.

A person may have difficulty retaining information, reconstructing previous experiences or considering several possible consequences at once.

Their supporter may remember an earlier outing differently.

Perhaps the patient recalls enjoying the day but has little memory of the difficult recovery afterwards.

That information could influence what they choose next time.

Clinicians and rehabilitation professionals can help establish decision-making supports that fit the person’s cognitive difficulties.

These might include brief written reminders, reviewing one option at a time, agreed records of important events or a simple way to consider the consequences of an activity.

Such arrangements can be developed in advance and used at home. [9][10]

They can also be revised when experience reveals a better approach.

The aim is to strengthen the person’s ability to participate in decisions.

Cognitive support is a means of preserving autonomy, rather than evidence that autonomy should be transferred to somebody else.

Where formal questions about decision-making capacity arise, assessment is specific to the decision, the time and the applicable legal framework. Support the person to understand and communicate their choice; a choice others consider unwise does not by itself establish incapacity. [10]

Different symptoms require different preparations

The general principle extends beyond mobility.

Consider someone with functional swallowing difficulties.

Every meal involves decisions about eating and drinking, yet daily access to a clinician is neither realistic nor necessary once an appropriate individualized approach has been established.

Medical and swallowing assessments can identify relevant risks. Speech-language pathology may help develop suitable strategies and explain which changes require reassessment. [7]

The patient and supporter can then apply those recommendations in everyday situations.

Where swallowing safety is uncertain or symptoms change significantly, appropriate medical reassessment remains important.

For someone with functional seizures, preparation may instead focus on recognising familiar events, communicating during warning periods, arranging a safer environment and understanding the agreed response.

These situations require different professional contributions.

What connects them is the objective:

Make the necessary expertise available during assessment and planning so that everyday decisions can be made more confidently afterwards.

Knowing when another appointment is worth the cost

An accessible plan also recognises that healthcare contact has consequences.

For someone with severe FND symptoms, an appointment may involve transportation difficulties, sensory exposure, pain, fatigue, episodes and substantial recovery demands.

The financial and practical costs can extend to supporters.

Those burdens deserve consideration when planning follow-up.

Patients benefit from knowing which concerns can be addressed through existing guidance, which may be suitable for a scheduled review, and which require prompt or emergency assessment.

Where services permit, telephone consultations, remote follow-up, written communication or coordinated appointments may reduce unnecessary travel.

These options are particularly relevant when the clinical question can be answered without an in-person examination. [8]

However, new or substantially changed symptoms, serious injuries and possible medical emergencies still require appropriate assessment.

An individualized safety plan should help people recognise those circumstances without expecting them to establish a diagnosis themselves.

The goal is to make medical care available when its expertise is needed, while reducing the burden of seeking permission or reassurance for ordinary activities.

Review what happens in real life

The care team may have developed an excellent plan.

But what if the patient cannot use it?

Perhaps the recommended route is inaccessible.

The necessary equipment is unavailable.

The supporter cannot safely perform an agreed task.

Or the arrangement demands more energy than the patient can consistently manage.

These difficulties provide information about the plan’s feasibility.

When professional review becomes possible, ask whether the recommendations addressed the intended problem under the circumstances in which the patient lives.

A practical review may examine participation, symptom burden, injury risk, supporter capacity, access to care and the resources required to maintain the arrangement.

Some changes can be made by the patient within previously agreed guidance.

Others may require the OT, physiotherapist or another professional to reassess the relevant activity.

Important medical changes require an appropriate medical review.

Responsibility for that follow-up should be clear before the patient leaves care.

The measure of an effective safety plan

Successful care may include fewer symptoms, improved movement or better tolerance of daily activities.

It may also mean a person can participate in valued activities despite persistent symptoms.

A supporter may be able to provide help without repeated injury.

A patient may become more confident about recognising familiar problems and knowing when additional care is appropriate.

These outcomes matter because the purpose of the plan extends beyond preventing emergencies.

A strong safety plan gives the patient and supporter practical knowledge, workable choices and clear routes to professional help when those choices are no longer sufficient.

Across this module, clinicians have considered how to recognise meaningful medical change, coordinate appropriate professional contributions and prepare people to manage daily life.

The next module explores functional seizures and other episodic symptoms in greater clinical detail.

The same principles continue to apply: clear assessment, individualized preparation, appropriate professional support and respect for the person’s ability to participate in their own care.

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For the Person With FND
For Family, Friends, and Other Supporters
For Clinicians and the Care Team
Research and Sources —

Further reading

• External memory supports
• Swallowing assessment and safety

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Research and Sources

The guideline and emergency reviews support shared planning, assessment of coexisting conditions and avoidance of unnecessary harm. OT, physiotherapy and speech-language consensus guidance inform the practical examples; multidisciplinary recommendations inform coordination. Ball and colleagues inform the FCD discussion. NICE supports decision-specific and time-specific assessment and communication support in its own legal setting; local law governs practice elsewhere. The college example is hypothetical, and community accounts are individual experiences. Evidence for the exact design and effectiveness of personal emergency plans remains limited. [1][2][3]

Citation	Figure	Full citation
[1]	—	Tolchin B, Goldstein LH, Reuber M, Stone J, Perez DL, LaFrance WC Jr, et al. Management of Functional Seizures Practice Guideline Executive Summary: Report of the AAN Guidelines Subcommittee. Neurology. 2026;106(1):e214466. FND-CIT-0010. https://doi.org/10.1212/WNL.0000000000214466
[2]	—	Anderson JR, Nakhate V, Stephen CD, Perez DL. Functional (psychogenic) neurological disorders: assessment and acute management in the emergency department. Seminars in Neurology. 2019;39(1):102–114. FND-CIT-0070. https://doi.org/10.1055/s-0038-1676844
[3]	—	Finkelstein SA, Cortel-LeBlanc MA, Cortel-LeBlanc A, Stone J. Functional neurological disorder in the emergency department. Academic Emergency Medicine. 2021;28(6):685–696. FND-CIT-0068. https://doi.org/10.1111/acem.14263
[4]	—	Das S, Yerraballa SRN, Shekhawat P. Coexisting postural orthostatic tachycardia syndrome on autonomic reflex testing in functional neurologic disorder. American Journal of Case Reports. 2026;27:e953323. https://doi.org/10.12659/AJCR.953323 FND-CIT-0293.
[5]	—	Nicholson C, Edwards MJ, Carson AJ, et al. Occupational therapy consensus recommendations for functional neurological disorder. Journal of Neurology, Neurosurgery & Psychiatry. 2020;91(10):1037–1045. FND-CIT-0011. https://doi.org/10.1136/jnnp-2019-322281
[6]	—	Nielsen G, Stone J, Matthews A, et al. Physiotherapy for functional motor disorders: a consensus recommendation. Journal of Neurology, Neurosurgery & Psychiatry. 2015;86(10):1113–1119. FND-CIT-0028. https://doi.org/10.1136/jnnp-2014-309255
[7]	—	Baker J, Barnett C, Cavalli L, et al. Management of functional communication, swallowing, cough and related disorders: consensus recommendations for speech and language therapy. Journal of Neurology, Neurosurgery & Psychiatry. 2021;92(10):1112–1125. FND-CIT-0025. https://doi.org/10.1136/jnnp-2021-326767
[8]	—	Lehn A, Petrie D, Palmer D, et al. Managing functional neurological disorder: treatment recommendations for health professionals in Australia. BMJ Neurology Open. 2025;7(1):e000970. FND-CIT-0076. https://doi.org/10.1136/bmjno-2024-000970
[9]	—	Ball HA, McWhirter L, Ballard C, Bhome R, Blackburn DJ, Edwards MJ, et al. Functional cognitive disorder: dementia’s blind spot. Brain. 2020;143(10):2895–2903. https://doi.org/10.1093/brain/awaa224 FND-CIT-0071.
[10]	—	National Institute for Health and Care Excellence. Decision-making and mental capacity. NG108. 2018. Recommendations. Guidance for people aged 16 and over, within the England and Wales legal framework. FND-CIT-0298.
[11]	Figure 1	Public Reddit comment in “What do you guys think about during seizures?” r/FND. Original comment. Verified October 25, 2026. Individual lived experience. FND-CIT-0296.
[12]	Figure 2	Public Reddit discussion, “I need advice.” r/FND. Original discussion. Supporter comment checked October 25, 2026. Individual lived experience, separate from the original poster’s account. FND-CIT-0286.

This page still needs review by people with FND, supporters and emergency-care teams, especially the balance between clarity and over-generalization.

Initial draft: September 4, 2026 · Evidence audit and approved corrections: October 25, 2026 · Editorial Audit 2: October 25, 2026 · Independent clinical review pending