An FND flare up plan is a short written note that says what a flare usually looks like for this person, what helps, what makes it worse and who to contact if things look different from usual. The person with FND should hold the main copy, with others going to the main family carer, anyone who visits to help at home and, if the person wishes, their GP or FND team.
To talk anything through with someone local, our St Albans team is on 01727 324 127.
This article is part of our guide to FND care at home.
What counts as a flare-up in FND?
A flare-up is a spell when familiar symptoms get noticeably worse for a while. For some people that means heavy fatigue or weakness. For others it is more pain, a stronger tremor, or thinking that feels slow and foggy.
Clinicians writing for neurosymptoms.org, a patient information site linked to FND research at the University of Edinburgh, say FND symptoms quite commonly relapse, sometimes after many months or even years. They also stress that relapse is not inevitable. A written plan is one way to be prepared.
Seizures are different and need their own document. We cover those separately in how to write a functional seizure plan for home. This article is about the other kinds of flare.
Why write it down at all?
During a flare, the person with FND may find it hard to explain what they need. Family members, meanwhile, can feel frightened and start doing too much. A plan written on a calmer day settles those questions in advance.
NHS Grampian's FND information says a good plan with achievable goals can reduce the likelihood of a flare-up. Gloucestershire Hospitals' leaflet also suggests sharing information with family, because it helps them stay calm when symptoms occur.
What to include in an FND flare up plan
Keep it to one or two pages, in plain words, and in the person's own voice where possible. The following headings work well.
What a flare looks like for me
Describe the usual pattern: which symptoms increase, how long a flare tends to last and what a good recovery looks like. FND Hope's response plan template, written for schools, includes a section headed "For me, FND looks like".
My early warning signs
List the small changes that come first. That might be poorer sleep, more stumbling, dropping things or finding conversation tiring. Spotting them early helps everyone adjust.
Things that can set it off
The Gloucestershire Hospitals FND leaflet names possible triggers such as illness with bed rest, physical injury, emotional events, stress and anxiety. NHS Grampian adds poor sleep. Note only the ones that apply to this person.
What helps
Write down the strategies that have worked before, especially any agreed with a physiotherapist, occupational therapist or psychologist. Cambridge University Hospitals' physiotherapy team, writing about persistent pain rather than FND, makes a useful point: focus on what you can do, and keep the list easy to find.
What does not help
For example, it might say: do not rush me, do not talk over me, and do not cancel everything for a week.
Everyday adjustments
Agree in advance which tasks can wait, who will cover meals or the school run, and how the day can be paced. NHS Grampian warns against overdoing it on good days and then crashing.
When to ask for advice, and who to call
Include the GP surgery, the FND team if there is one, and two family contacts. Also write down what to do if symptoms are new or clearly different from the usual pattern. NHS Grampian suggests talking to the GP about new or ongoing symptoms, and in an emergency, call 999.
Who should have a copy of the FND flare up plan?
The plan belongs to the person with FND, so they decide who sees it. Usually, copies go to:
- the person themselves, kept somewhere easy to reach
- the main family carer, and anyone else living in the home
- visiting carers, with the plan written into the care plan that guides each visit
- the GP or FND team, if the person would like them to see it
- an employer or college, only if the person chooses
Also keep a paper copy somewhere known, such as a kitchen drawer, for anyone new to the home.
Writing it together, then reviewing it
Choose a settled day, and let the person with FND lead. Family can prompt with questions, but the words should be theirs. Then, after each flare, look back at what came first and what helped, and update the plan. The Cambridge leaflet recommends that kind of reflection afterwards.
A flare plan also sits well alongside a pacing plan. Our article on FND fatigue and pacing looks at planning a day that holds.
How a flare-up plan fits with care at home
In practice, carers can shorten or reshape a visit, prompt rest breaks, help with personal care and meals, and keep the home calm. They also note changes and tell the family, and they contact the GP or emergency services when the plan says so.
Carers do not change medication or treatment, and they follow what the clinical team has set out. Sometimes a plan also includes a break for the family carer. Our respite care at home can be booked ahead for times when flares tend to cluster.
Frequently asked questions
Does Starling Homecare provide FND care in Hertfordshire?
Yes. Starling Homecare is an independent, family run provider based in St Albans and registered with the Care Quality Commission. We provide FND care at home in Hertfordshire, through visiting care and live-in care. You can read more on our FND care page.
Does a flare-up mean FND is getting worse?
Not necessarily. FND specialists describe symptoms that can come and go over time, and a flare may settle. If the pattern seems to be changing, raise it with the GP or FND team.
Should medicines go in the plan?
Only what the prescriber has already set out, copied exactly. The plan is a record of agreed steps, not a place to decide new ones.
Is a flare-up plan worth having if the person lives alone?
Yes, arguably more so. Whoever is called on to help may not know the usual pattern. Keep the contact list by the phone and a copy with a trusted neighbour or relative.
How Starling Homecare can help
Starling Homecare is a family run, CQC registered provider based in St Albans, offering FND care at home.
Arranging Care Is Simple
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2. A home visit and initial consultation
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3. Your care begins
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