How to Request FND Referral in the UK

Knowing how to request FND referral support can feel harder than it should, especially when you are already managing episodes, pain, fatigue, mobility changes or the exhaustion of having to explain yourself repeatedly. You deserve to be taken seriously. FND is real, symptoms can be disabling, and asking for the right support is a reasonable next step - not a favour.

In the UK, the route into FND care varies by area. Some people are referred to neurology first, while others may be referred onwards to neurophysiotherapy, occupational therapy, psychology, pain services or a local multidisciplinary FND service. Your GP can help identify the most appropriate route, but it is useful to arrive with a clear picture of what is happening and what you need help with.

Start with a GP appointment

Book a routine GP appointment and say when booking that you need to discuss FND symptoms or an existing FND diagnosis and a referral. If speaking on the phone feels difficult, consider asking a carer, family member or trusted person to help you prepare what to say. You can also ask whether your practice accepts an online consultation or written information in advance.

At the appointment, be direct about the impact of your symptoms. You do not need to minimise them because they fluctuate, because you had a better day yesterday, or because you worry about being seen as a burden. Fluctuation is part of many people's experience of FND.

You might say:

> “I am experiencing symptoms that are affecting my day-to-day life, and I would like to discuss an FND referral or the next appropriate specialist referral.”

If you already have an FND diagnosis, say who diagnosed you and when. Explain what has changed, what support you have tried, and where you are getting stuck. For example, you may need help with functional seizures, falls, weakness, walking, tremor, speech changes, pain, fatigue, sensory symptoms, brain fog, work or daily tasks.

Be clear about what you are asking for

A referral is more likely to be useful when it has a purpose. Rather than feeling you must know exactly which service you need, explain the practical problem and ask your GP what local service is best placed to help.

For example, you could ask whether a referral to neurology is appropriate if your symptoms are new, your diagnosis is uncertain, or you need specialist review. You may ask about neurophysiotherapy if movement, balance, walking or falls are major difficulties. Occupational therapy can be helpful where fatigue, planning, personal care, equipment, pacing or returning to everyday activities are concerns.

Psychological therapy may also be offered as part of FND care. This does not mean symptoms are imagined or “all in your head”. FND is a neurological condition, and therapy can be one part of practical support for the nervous system, stress responses, trauma where relevant, adjustment and symptom management. It should be explained respectfully and offered alongside, not instead of, appropriate physical and neurological care.

If functional seizures or episodes are affecting safety and independence, ask what local support is available and whether your care plan needs reviewing. A record of episodes can make patterns clearer. FND Connect’s SeizeControl tool can help you privately track episodes, symptoms and medication context, then create a clearer summary for appointments.

Prepare a short appointment pack

You do not need a polished case file to deserve a referral. A one-page note can be enough, particularly if brain fog, fatigue, speech symptoms or anxiety make it hard to remember everything in the room.

Include the date your symptoms began or changed, any diagnosis you have received, your main symptoms and how often they happen. Add a few real examples of the impact: needing help to wash, being unable to safely use stairs, missing work, cancelling plans, struggling to prepare food, or recovering for days after an episode.

It can also help to note what makes symptoms worse or better, any falls or injuries, medication you take, previous tests, and the names of clinicians already involved. Keep the focus on what is relevant rather than trying to prove every detail of your experience.

If someone has seen how symptoms affect you at home, they may be able to write a brief supporting note. You can also take somebody with you to the appointment, if that feels right. Their role is not to speak over you, but to help you feel heard and remember what was agreed.

Questions to ask before you leave

Referrals can disappear into uncertainty if you leave without knowing what happens next. Before the appointment ends, ask which service you are being referred to, why that service has been chosen, and whether the referral will be sent electronically.

You can also ask about the expected waiting time, whether there is a local FND pathway, and what support is available while you wait. If a particular hospital or service has been discussed, ask whether you have a choice of provider for a first outpatient appointment. This can depend on the service, your location and NHS eligibility rules, so your GP practice can explain what applies in your circumstances.

Request a copy of the referral letter or ask for it to be added to your NHS App record if your practice uses this. Checking the wording matters. It should accurately describe your symptoms, diagnosis or suspected diagnosis, functional impact and reason for referral. If something is incorrect or dismissive, raise it calmly with the practice and ask how it can be clarified.

If your GP says they cannot refer directly to an FND service

This is common and does not mean the conversation is over. Dedicated FND services are not available everywhere, and referral criteria differ. In some areas, a neurologist must make the onward referral. In others, the available support may sit within community rehabilitation, physiotherapy, pain management, mental health or neuro-rehabilitation services.

Ask: “What is the appropriate next referral in our area for someone with FND and these symptoms?” This keeps the conversation practical. If the answer is neurology, ask whether the referral can explain the FND diagnosis, the change in symptoms and the support you need, rather than simply requesting another assessment without context.

If you feel your concerns have not been understood, you can ask for a longer appointment, request to see another GP in the practice, or speak to the practice manager about the process. A second conversation can be particularly helpful when the first appointment was rushed or you were too unwell to explain clearly.

While you are waiting

Waiting for specialist care can be frustrating and isolating. It does not mean you should be left without any support. Ask your GP what can be put in place now, such as fit notes, medication review, falls advice, a social prescriber, local physiotherapy, occupational therapy assessment or support with benefits paperwork where appropriate.

Keep a simple symptom and activity record, but try not to turn tracking into another exhausting task. The aim is to spot useful patterns and give clinicians a truthful picture, not to monitor yourself perfectly. Record particularly difficult days as well as better ones, because appointments can otherwise capture only a small part of a fluctuating condition.

If your symptoms affect work, education or caring responsibilities, ask early about practical adjustments. These could include rest breaks, reduced hours, flexible attendance, remote options, accessible parking, mobility support or changes to tasks. You do not have to wait until you are at breaking point before asking for help.

New or severe symptoms still need medical assessment

Having FND does not protect you from other health conditions. Do not assume a new, severe or clearly different symptom is “just FND”, particularly sudden weakness on one side, facial droop, severe chest pain, a new severe headache, serious injury after a fall, loss of consciousness, breathing difficulty or a seizure that is different from your usual pattern.

Call 999 or go to A&E for an emergency. For urgent advice that is not immediately life-threatening, use NHS 111. It is always appropriate to tell clinicians that you have FND while also explaining what is new or different.

You are allowed to ask for a referral, ask what happens next and ask again if the plan has not been followed through. One calm, well-prepared appointment will not fix every gap in local services, but it can turn a vague request for help into a documented route forward. Your symptoms are not a test of how convincing you can be. They are a reason for care.