Understanding Functional Neurological Disorder (FND)

Clinical Sciences Building Department of Clinical Neuropsychology 0161 206 4694

© G19100204W. Design Services, Salford Royal NHS Foundation Trust, All Rights Reserved 2019. Document for issue as handout. Unique Identifier: NOE32(19). Review date: October 2021. What is Functional This lea!et has been designed Neurological Disorder (FND)? in collaboration with people People with FND experience FND is manageable with the episodes of temporary loss of right information and support. who experience Functional control that happens when the In many cases people are able Neurological Disorder (FND) connection between the mind to lead independent lifestyles to help you understand the and body is interrupted. with little disruption. diagnosis of FND. FND is not dangerous. FND Some people worry that being does not cause any damage diagnosed with FND means It explains what FND is and inside your brain or body and is that doctors think they are how it can be managed. never fatal. “pretending” or that it is “all in FND can affect anyone. It their head”. This is NOT true: If you have any questions often happens to people who Symptoms of FND are real. about this lea!et, please ask are good at “putting up“ with difficult situations or stressful a member of sta" or email events and can “carry on” under How many people have the Clinical Neuropsychology pressure for a long time. There FND? Department at: may however, be a number of In hospital outpatient services, reasons why a person develops FND symptoms are amongst reftoneuropsych@srft. FND and these may not be the most common reasons why nhs.uk obvious at first. someone may see a Neurologist.

© G19100204W. Design Services, Salford Royal NHS Foundation Trust, 1 All Rights Reserved 2019. Document for issue as handout. 2 Unique Identifier: NOE32(19). Review date: October 2021. What does FND look/feel like? Why does FND happen? - What makes the Mind- FND episodes are not always the same. You may experience symptoms Mind-Body link Body link cause FND? that affect your movement, senses or awareness. Some examples are Psychological experiences affect One way of understanding FND below (though you may have some symptoms not in this diagram). the body all the time. is to imagine a pressure cooker. For example: When heat is turned up under a Blackout / Lose control pressure cooker, steam builds up / Unresponsive Sudden shock = heart beats inside. A pressure cooker needs More faster a valve to release excess steam, disruptive “Absences” / No memory Embarrassment = face goes but sometimes this valve can be symptoms or awareness of actions red blocked. Changes to vision / Upset = eyes produce tears Changes to hearing / Difficult life events and on- Changes to other senses It is normal for some changes going stresses affect people in to happen to the body without the same way as heat affects a Weakness / Difficulty a medical cause or disease (e.g. pressure cooker. controlling movement / tears when we feel sad are not Emotional and physical stress Shaking caused by a disease; it is the Less builds up inside people, similar mind-body link). to the way that steam builds up disruptive Loss of feeling in limbs symptoms These examples are real effects in a pressure cooker. of the Mind-Body link that can This can be sudden (e.g. happen to any of us, at any unexpected bereavement, time. a sudden serious illness) They are not always within or gradual (e.g. financial Feeling unreal / our control and can happen difficulties, living with physical Far away / “Spaced out” automatically. FND also health conditions, overworking Signs an happens through the Mind- for long periods). Body link. FND episode Anxiety / contined next page may be Rushing feeling coming on

© G19100204W. Design Services, Salford Royal NHS Foundation Trust, 3 All Rights Reserved 2019. Document for issue as handout. 4 Unique Identifier: NOE32(19). Review date: October 2021. Why do only some people develop FND and not others? Just like a pressure cooker needs a valve to release steam, we all need FND can affect anyone, but Often the exact factors to have ways of releasing pressure/ stress. it usually happens in people affecting a person’s pressure who are good at “carrying on” cooker are not obvious at first, If we are not able to do things that will help us to release stress through difficult experiences because everyone’s lives are then stress is released through the mind-body link and FND that affect their lives. different. episodes can happen. There can be a number of People are sometimes The Pressure Cooker Model reasons why a person’s pressure concerned that FND symptoms cooker fills up and the stress is are their fault, that they have Pressure release valve “closed” (things preventing release of stress) not released: caused them or that they should e.g. Always “putting other people !rst” be able to control symptoms. e.g. No one to talk to about upsetting events Some people may not notice e.g. “Bottling up” feelings the build-up of pressure This is NOT true. e.g. Too busy to rest properly over time and may not feel You did not bring on the FND stressed when they should do symptoms, BUT with the right information and support you Emotional stress released Emotional and Some people can get into the habit of “bottling up” can learn to manage symptoms through mind-body link physical stress and lead an independent (e.g. NEAD symptoms) building up in body feelings and emotions or “carry on going” in situations lifestyle with little disruption. that other people might find too difficult Stressful life events or ongoing di!culties Some people may believe Past stressful or Current stressful Mental health problems Physical illness they shouldn’t burden people traumatic situations situations (e.g. low mood, anxiety) (e.g. pain, fatigue, poor health) by talking about difficult life events Some people may feel they must always put others first and are unable to take a break when they need to

© G19100204W. Design Services, Salford Royal NHS Foundation Trust, 5 All Rights Reserved 2019. Document for issue as handout. 6 Unique Identifier: NOE32(19). Review date: October 2021. How is FND diagnosed? How do we manage FND? FND symptoms are often Research and national Physiotherapy can help in a Treatment is made up of three thought to be a neurological guidelines recommend people number of ways: stages: disease at first, but a Neurologist who experience FND episodes Develop better control over 1. Information: Learning about or Neuropsychiatrist knows the work with a psychological your movement and relearn what FND is and how it important differences to look therapist and/or physiotherapist normal movement patterns happens. for to make the FND diagnosis. specially trained in FND. Retain your movements by 2. Stabilising: Strategies to Sometimes a diagnosis can be Some people believe that using distraction techniques control and reduce episodes- made quickly, though it may be working with a psychological to allow automatic movement usually with a short course of necessary to carry out several therapist is a sign that they are physiotherapy. tests that may take time. thought of as “pretending” or Reduce the amount of 3. Support making changes: that symptoms are “all in their any unwanted movement People often feel uncomfortable Find new ways to manage head”. This is NOT true. patterns being reinforced or confused with the diagnosis stressful situations and Avoid developing unhelpful of FND because they have not A specialist psychological patterns of coping that prevent reliance on walking aids / heard of it before or it has taken therapist is trained to help you FND returning in future- wheelchairs a long time to get the diagnosis. understand how the Mind-Body usually with an outpatient An FND diagnosis is made link works and to manage the Increase independence in psychological therapist from signs and symptoms that causes of FND. everyday tasks a specialist can recognise. It is There is no medical treatment not made because doctors are for FND because it is not caused “giving up” or “have run out of by disease or damage to the tests”. body. Some people may notice their FND symptoms include difficulty controlling their movement. In these cases a physiotherapist specially trained in FND can help.

© G19100204W. Design Services, Salford Royal NHS Foundation Trust, 7 All Rights Reserved 2019. Document for issue as handout. 8 Unique Identifier: NOE32(19). Review date: October 2021. What will happen to my FND symptoms in the REMEMBER: FND is not long term? dangerous. It can affect FND symptoms are reversible. anyone and it is not your fault. Most patients find their With the right information symptoms improve naturally and support you can learn to with time, but recovery is manage symptoms and lead and usually better with access to independent lifestyle again. the right support. Many people find that once they gain an Useful links, associations understanding of FND and how & contacts to manage the symptoms they stop happening as frequently. www.neurosymptoms.org An inpatient hospital www.nonepilepticattacks. environment is not usually info the right place for patients with FND. Patients who spend too long in hospital Notes may lose confidence in their independence - this makes their long term recovery poorer. There is no medical treatment for FND. It is normal for clinical staff to help patients to be discharged home as soon as possible, by making it a priority to provide information about FND and showing patients how to manage their FND symptoms independently in the community.

© G19100204W. Design Services, Salford Royal NHS Foundation Trust, 9 All Rights Reserved 2019. Document for issue as handout. 10 Unique Identiﬁer: NOE32(19). Review date: October 2021. © G19100204W. Design Services Salford Royal NHS Foundation Trust All Rights Reserved 2019 This document MUST NOT be photocopied

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