Appointments can feel difficult when you are trying to explain symptoms that change, come and go, or affect several parts of your life. You may have questions about your diagnosis, treatment or what support is available.
A little preparation can help you make the most of the time. You do not need to have everything written down, and you do not need to explain your symptoms perfectly. This guide is here to help you focus on what matters most to you.
Before your appointment
Choose your main priorities
Appointments can feel short, so consider writing down the two or three things you most want help with. For example:
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understanding how your FND diagnosis was made
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getting advice about a symptom that is affecting daily life
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discussing treatment or rehabilitation
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asking what to do if symptoms change
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finding out who to contact for ongoing support
You can begin by saying, “The main things I’d like to discuss today are…”
Make a short note about your symptoms
You might find it useful to note:
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what happens and how it affects you
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when the symptoms started, or when they changed
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how often they happen and how long they last
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anything that seems to make them better or worse
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what you find difficult at home, at work or when getting out and about
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what you have already tried and whether it helped
A brief note is enough. You do not need to keep a detailed diary unless that is useful to you or your clinician has suggested it.
If you have had an episode that is hard to describe, write down what you remember before, during and afterwards. If somebody witnessed it, they may be able to share what they noticed. A description can help your clinician understand the episode, but it cannot diagnose it by itself.
Gather useful information
If relevant, bring or make a list of:
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your current medicines, including any vitamins or supplements
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previous clinic letters or test results you have access to
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the names of the clinicians or services involved in your care
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questions you have written down since your last appointment
You do not need to bring every record. Choose what seems most relevant to the reason for this appointment.
Think about what would make the appointment easier
You can ask whether a friend, family member or carer may come with you. They could help you remember what was said, take notes, or explain what they have observed.
If you have communication or access needs, contact the clinic beforehand to ask what support they can arrange. You can also ask for information to be written down or explained in another way.
Questions you could ask
Use the questions that feel relevant to you. You do not need to ask all of them.
About the diagnosis
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What features of my symptoms or examination support an FND diagnosis?
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Could you explain what those signs mean in my case?
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Is there anything about my symptoms that still needs assessment?
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Could I have FND alongside another condition?
About treatment and support
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What treatment or rehabilitation might help with my symptoms?
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Is there a local neurophysiotherapy, occupational therapy or speech and language therapy service that may be suitable?
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Who is coordinating my care?
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What can I do while I am waiting for an appointment or referral?
Treatment for FND is individual. The right approach depends on the person’s symptoms, needs and goals.
About symptoms and next steps
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What should I do if this symptom happens again?
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What changes should prompt me to seek medical advice?
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Who should I contact if I have questions after this appointment?
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When should we review my progress?
If you have a new or suddenly worsening symptom, ask a healthcare professional how it should be assessed. A previous FND diagnosis does not mean every new symptom should automatically be assumed to be FND.
During the appointment
It is okay to say if you are anxious, tired, overwhelmed or finding it difficult to explain something. You can pause, look at your notes, or ask the clinician to repeat or rephrase a point.
If there is not enough time to discuss everything, ask which issue should be followed up and how. Before you leave, it can help to check:
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what the agreed next steps are
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who is responsible for each referral or follow-up
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when you should expect to hear more
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what to do if your symptoms change before then
You can ask for important information or the plan to be written down.
After the appointment
When you have had time to rest, you may want to note what was discussed and any next steps. If something remains unclear, contact the clinic or your GP to ask for clarification.
It can take more than one conversation to understand a diagnosis and decide what support may help. Asking questions is a normal part of working with your healthcare team.
This article is for general information and support. It does not replace advice or care from a qualified health professional.
Further reading: NHS advice on preparing for an appointment · NHS inform: Functional neurological disorder · FND Action: Diagnosis