Inflammatory Neuropathies UK fundraising challenge for 2026. Raisng funds for Guillain-Barre Syndrome, GBS, CIDP, and MMN GBS and CIDP Awareness Month Every May, we come together to shine a light on Guillain-Barré syndrome (GBS) and Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). These are rare, life-changing conditions that too many people still haven’t heard of until they impact them or someone they love. Awareness Month is about changing that. It’s about making these conditions visible. It’s about helping people get diagnosed faster. And it’s about making sure no one faces Inflammatory Neuropathies alone. Get INvolved This year, we’re inviting you to be part of two simple, but powerful campaigns: IN the Water Take to the water, whether that’s a swim, paddle, dip, or even just getting your feet wet. It’s a moment to reflect, raise awareness, and stand in solidarity with everyone impacted by GBS and CIDP. You can even raise some money for us at the same time. You can find more by clicking on the button below. CLICK HERE TO LEARN MORE Share & Shout Use your voice. Share your story. Start a conversation. Post on social media, talk to your workplace, or simply tell a friend about your condition. The more people who understand these conditions, the more change we can create. If you want to help raise vital funds for us during GBS and CIDP Awareness Month 2026, then we have a dedicated JustGiving page where you can donate, or where you can set up your own fundraising page by clicking here You can also donate via a text message. Just text AWARE to 70460 to donate£10. Texts will cost the donation amount plus one standard network rate message . Be part of something bigger Awareness Month is driven by people like you, our wonderful community of people, families, clinicians, and supporters. However you choose to get involved, you’re helping to build understanding, support, and hope. If you’d like to take part, fundraise, or run your own activity, we’d love to hear from you. 📧 Email us: hello@inflammatoryneuropathies.uk 🌐 Visit: www.inflammatoryneuropathies.uk 📱 Follow and tag us on social media to join the conversation @InflamNeuroUK What’s on We are running a series of events, activities, and opportunities to connect throughout the month. Get Togethers MMN Online Get Together – Tuesday 12th May at 7pm GBS Online Get Together – Thursday 21st May at 2pm CIDP Online Get Together – Thursday 28th May at 2pm Essex Get Together – Saturday 30th May at 11am CLICK HERE TO FIND OUT MORE IN Conversation Facebook Session – Friday 15th May at 12pm CLICK HERE TO FIND THE GROUP Webinars Benefits and Welfare – Tuesday 19th May at 12.30pm CLICK HERE TO REGISTER Advoca App (Onboarding and how to use it) – Wednesday 27th May at 2pm CLICK HERE TO REGISTER

200 Club Feeling lucky? Then join the Inflammatory Neuropathies UK 200 Club! 200 Club is a fun and easy way to raise funds for our support of conditions like GBS, CIDP, and MMN, while at the same time offering you the chance to win monthly cash prizes. The more people who join in, the bigger the pay-out for our lucky winners so spread the word to family and friends! Sign up by clicking this box How does it work? It couldn't be easier. You pay £20 and receive an available number between 1-200 (this can be paid in one go or in two instalments of £10). This number will be part of the next 12 monthly draws including the annual Super Draw! On the second Wednesday of each month, the Inflammatory Neuropathies UK team draws numbered balls from a hat and if the drawn ball matches your number - you're a winner! We told you it was simple. You can watch the draw on our social media channels. Takings are split 50/50. 50% of your £20 will go to our charitable objectives, and 50% goes into the prize pot. There are three cash prizes to be won. First prize receives 40% of the monthly prize fund, while two lucky runners up will receive 20% each of the monthly prize fund. The mathematicians among you will have spotted that leaves an additional 20% of the prize fund - this goes towards our annual Super Draw in March, where one extra lucky winner will take home the grand prize! Winners will be notified after the draw via email/phone. Participants must be 18 or over and resident in England, Scotland or Wales. (Due to gambling regulations, this draw is not available to residents of Northern Ireland or the Republic of Ireland.) Please gamble responsibly #BeGambleAware https://www.begambleaware.org/ Terms and conditions The 200 Club will operate as a Small Society Lottery as defined by the Gambling Act 2005. Inflammatory Neuropathies UK is registered with North Kesteven District Council for this purpose. The object of the Club is to raise funds for Inflammatory Neuropathies UK. The subscription to the 200 Club shall be £20 per year per entry, payable in advance. Members may have and are encouraged to have multiple subscriptions. The subscription year runs from April to March the following year. There is no provision to opt in/out on a month-by-month basis. Anybody living in England, Scotland or Wales aged 18 or over can become a member of the 200 Club and you are encouraged to get family and friends to join. The 200 Club shall not be limited to 200 members. A member is eligible for inclusion in the draw for any month so long as the subscription has been paid. Each member is allocated a permanent number per entry in the monthly draw. This number shall remain the member’s number provided that their subscription is up to date. Members are not permitted to choose their own numbers. Numbers will be randomised and posted out to all members prior to the first draw of their membership. There will be a draw of 3 prizes per month, with an additional annual bonus prize to be drawn in March. The draw for each month shall be made on the second Wednesday of each month at 2pm. The draws will be made by a member of the Inflammatory Neuropathies UK staff, witnessed by at least one other person, and will be broadcast via video link to any member wishing to watch the draw. Monthly prizes will be awarded according to membership of the 200 Club for that month as follows: 20% of the annual net payments make up the monthly 1st prizes (12 prizes of 1.66% each) 10% of the annual net payments make up the monthly 2nd prizes (12 prizes of 0.83% each) 10% of the annual net payments make up the monthly 3rd prizes (12 prizes of 0.83% each) 10% of the annual net payments will make up the annual bonus prize The remaining 50% of the annual net payments will be allocated to Inflammatory Neuropathies UK funds winners will be contacted individually immediately after each of the prize draws. The Inflammatory Neuropathies UK 200 Club administrators will make all reasonable efforts to pay prizes to the winners within two weeks of the draw. Payment of prize winnings will be made by bank transfer. Unless otherwise advised, a member will be deemed to have left the Inflammatory Neuropathies UK 200 Club if his/her subscription renewal remains unpaid for a period of one month. If a winner cannot be contacted, the winnings will be placed into Inflammatory Neuropathies UK funds after six months. The decision of the Inflammatory Neuropathies UK management team shall be final in all matters requiring adjudication. The Inflammatory Neuropathies UK management team shall also have the power to amend or revoke these rules at their absolute discretion with such reasonable notice to the 200 Club members as is necessary. Thank you for your support If you have any questions regarding the Inflammatory Neuropathies UK 200 Club Rules of Membership, please contact Inflammatory Neuropathies UK by telephone 01529 469910 (Monday to Friday, 9am-3pm) or by email to hello@inflammatoryneuropathies.uk

Medically sourced information on Guillain-Barré Syndrome (GBS) Guillain-Barré Syndrome (GBS) Welcome to our Guillain-Barré Syndrome Information Hub Please note: work on this page is IN progress to make it more accessible and readable. To view the static GBS page, visit here. If you've found yourself on this page due to a recent diagnosis of GBS either in yourself, or someone important to you - welcome. We know this is a scary and confusing time. You may never have heard of the condition, and the speed of it has left you reeling. We hope this page brings a little clarity to the situation, and helps explain what is happening with GBS, its cause, how it's diagnosed, treated, and the future. Our information is sourced from our Medical Advisory Board, medical texts, and recognised support providers. Where possible, we've taken steps to make this page as accessible to everyone as possible, giving simple explanations or writing in plain language. If you have any questions after reading this that you feel haven’t been answered. Please get in touch with us, we will do our best to respond or point you to the right place or person. Here are some helpful links that may be useful now, or throughout your experience. Our Peer Support service can link you up with someone with lived experience Our Personal Grants can help with home adaptations or with travel costs If you feel you need support with the emotional impact of this, we have a specialist rare condition support service available. Lived stories from people who have been in a similar position What is Guillain-Barré Syndrome (GBS) and the variants? Read More GBS | Causes Read More GBS | Symptoms Read More GBS | Diagnosis Read More GBS | Treatment Read More GBS | Mechanical Ventilation Read More GBS | ICU Read More GBS | Mental Health, Well Being, and Work following GBS Read More GBS | What's Next? Read More GBS | Residuals Read More GBS | Carers Read More GBS in Children Read More GBS | Vaccinations Read More GBS | Other Acute Inflammatory Neuropathies Read More Anchor 1 What is Guillain-Barré Syndrome (GBS) The basics (bold text in this section has an IN simple terms explainer below) Guillain-Barré (pronounced ghee-yan bar-ray) Syndrome, or GBS for short, is a rare and serious neurological condition known as an Inflammatory Neuropathy that damages the Peripheral Nerves . In GBS, the body's immune system goes into overdrive and produces Antibodies that attack the Peripheral Nerves. The immune attack triggers inflammation around the nerves and damages the protective Myelin coating that helps electrical signals travel smoothly along the Axons. The result of this damage causes messages between the brain and muscles to become slowed, disrupted, or halted in some cases altogether. This causes weakness, tingling, pain, and possible paralysis which can develop rapidly (often within 48 hours from onset) but should improve over time as the inflammation settles via urgent treatment. Most recover, however some sadly do not. Many are left with long-term or lifelong residual effects, which may include ongoing weakness, loss of sensation, chronic pain, and significant impacts on mental and emotional well-being. IN simple terms: Inflammatory Neuropathy Neuro means string, or nerve. Pathy , in the medical world, refers to a disorder or system of medicine. So Neuropathy simply means a condition impacting the nerves. Inflammation is part of the biological defence response of body tissues. The five signs of inflammation are heat, pain, redness, swelling, and loss of function. Therefore, an Inflammatory Neuropathy is when the nerves are damaged or impacted through inflammation. IN simple terms: Peripheral Nerves Your brain and spine are called the Central Nervous System (CNS). T he Peripheral Nervous System (PNS) is the network of nerves carrying messages to and from the CNS to your limbs, organs, and the rest of your body. The PNS consists of sensory, motor, and autonomic nerves, transmitting sensations, controlling muscle movement, and regulating involuntary functions like heart rate and digestion. IN simple terms: Antibodies An antibody is a large protein which is used by the immune system to identify and neutralise antigens (toxins, bacteria, viruses). IN simple terms: Myelin & Axons The Myelin is an insulating layer, or sheath, that surrounds nerve fibres, think of it as the plastic protective casing that surrounds an electrical wire. The electrical wire in this case is an Axon , or simply, the Nerve Fibre's. The wire transports signals between your central nervous system and peripheral nervous system. Demyelination is the name for damage to the Myelin. How many people get GBS? It affects one to two people per 100,000 per year (around 1,300 people each year in the United Kingdom). Who is most likely to develop symptoms? People of all ages can develop GBS, but it is more common in adults, and in men than in women. Is GBS infectious? It is neither hereditary nor infectious, so you can’t pass it on to your children, or transmit it to someone else. It tends to be caused by an infection or illness like food poisoning. See the Causes of GBS section for more. Will I recover from GBS? Is it fatal? Most people will eventually make a good recovery, but it can be life-threatening. Some people will make a complete recovery with full bodily function. Some people are left with long-term problems, from severe fatigue to dexterity and mobility issues. About 2-5% of people with GBS die. Quick diagnosis and rapid access to treatment like IVIg (see GBS treatment section), makes the likelihood of recovery much higher. Will GBS come back? GBS is a one-off condition which usually does not happen again, except in around 3% who may experience GBS more than once, perhaps many years later. The fear of recurrence is very natural, and is felt by many in our community. You're not alone in any worries you feel about GBS returning, but please remember it is a very rare event. How long will recovery from GBS take? GBS worsens for up to four weeks. Unfortunately, recovery usually takes much longer than this. The speed of recovery depends on the type and severity of damage. Demyelination , inflammation and antibodies usually improve within week. If there is damage (degeneration) of the axons , recovery takes many months or up to three years, and is often incomplete. If the muscles have become very thin (wasted) this usually indicates axonal damage and a slower recovery. Axonal degeneration may occur in either AIDP or axonal GBS (see section below on types of GBS ). The distinction between AIDP and axonal GBS does not affect treatment or the speed of recovery. The factors which usually indicate a slower recovery are: more severe weakness older age diarrhoea just before GBS starts In some cases, an initial diagnosis of GBS may later be changed to CIDP, a chronic variant in which nerve inflammation lasts for years. ‘Chronic’ means continuing for a long time. CIDP stands for Chronic Inflammatory Demyelinating Polyradiculoneuropathy. By definition, in CIDP the symptoms continue to worsen more than 8 weeks after onset, usually after improving first. If someone with severe GBS is not improving, this is more likely GBS with axonal damage than CIDP. Is There More Than One Type of GBS? Yes. The word ‘syndrome’ in GBS means it is not a single disease but includes several different diseases which may look similar. AIDP The most common type of GBS is acute inflammatory demyelinating polyneuropathy or AIDP. ‘Acute’ means starting quickly, ‘Inflammatory’ means a reaction of the immune system, for example when your skin is inflamed it looks red and feels uncomfortable. ‘Demyelinating’ means damage to the myelin. ‘Polyneuropathy’ means a disease affecting the nerves. The myelin sheath is made and repaired by cells called Schwann cells. People with AIDP typically have numbness/tingling as well as weakness. In more severe forms of AIDP, both the axon and the myelin may be damaged, giving slower recovery. AMAN and AMSAN The axon is the conducting core of the nerve, equivalent to the copper wire within electrical cables. In AIDP this is usually not damaged. However, in the variants called AMAN (acute motor axonal neuropathy) and AMSAN (acute motor and sensory axonal neuropathy), the axon is damaged too. Recently, variants of axonal GBS have been discovered in which the axon is temporarily blocked by antibodies without much damage, which can therefore recover more quickly. These may be called paranodopathy, acute motor conduction block neuropathy, or reversible conduction failure. Although the commonest (classical) form of GBS causes weakness and sensory loss throughout the whole body, some people with GBS may have one of several variants which look different. Pattern of Symptoms in Variants of GBS These variants include: weakness without sensory loss (pure motor variant, usually AMAN) weakness only in face and cranial nerves (facial palsy with paraesthesias) weak face, tingling in the arms/legs but no weakness in the arm/legs weakness only in arms, neck and throat (pharyngeal–cervical–brachial variant) weakness only in legs (paraparetic variant) Miller Fisher syndrome (MFS) GBS variants are rarely ‘pure’ but often overlap in part with classical GBS. Antibodies to molecules called gangliosides are found in many of these variants, but not usually in classical AIDP. Miller Fisher Syndrome and Variants Miller Fisher syndrome (MFS) is also known as Fisher’s syndrome. MFS typically causes: abnormal coordination (‘ataxia’, such as clumsiness and poor balance as if drunk). paralysis of eye movements (‘ophthalmoplegia’, which may cause difficulty reading or double vision). absent tendon reflexes (‘areflexia’, detectable by a doctor but causes no symptoms). Often there is weakness of the face but many people have no weakness. Variants of Miller Fisher syndrome Some people with MFS also have weakness of the whole body and are then considered to have an overlap of both MFS and GBS. The speed of recovery is largely determined by the severity of the GBS. If GBS causes weakness of eye movements (which it usually doesn’t) this is also an overlap with MFS. Rare milder variants of MFS may have weakness only of eye movements (‘acute ophthalmoparesis’). Bickerstaff’s brainstem encephalitis (BBE) means MFS with additional inflammation of the brainstem. This typically causes drowsiness or reduced consciousness, often with whole-body weakness, and may be shown on MRI scanning or by neurological examination. BBE is the only variant of GBS affecting the brain; otherwise GBS and MFS affect only the peripheral nerves not the brain. Antibodies to ganglioside GQ1b (IgG type) are found in most patients with MFS and its variants (but not other types of GBS), suggesting they are all closely related. What causes Guillain-Barré Syndrome (GBS) Guillain-Barré syndrome is thought to be caused by an over-reaction of the immune system, the body’s natural defence against illness and infection. Normally the immune system attacks any germs that get into the body. A disease in which the immune system attacks its own body is called an autoimmune disease . In people who develop Guillain-Barré syndrome, the immune system experiences a sort of allergic reaction to the infection and it mistakenly attacks the peripheral nerves. The immune reaction in GBS causes the myelin to become inflamed and may also damage the axons . This prevents signals from the brain travelling along the nerve fibres properly, which can cause numbness, weakness and pain in the limbs. Because many nerves are inflamed, GBS is called a ‘polyneuropathy’. Poly means "many" IN simple terms: Myelin & Axons "wait, myelin... axons..?" Don't worry - that's why we are here. The Myelin is an insulating layer, or sheath, that surrounds nerve fibres, think of it as the plastic protective casing that surrounds an electrical wire. The electrical wire in this case is an Axon , or simply, the Nerve Fibre's. The wire transports signals between your central nervous system and peripheral nervous system. Demyelination is the name for damage to the Myelin. Now it is all a little more complicated than that, but this just gives you a quick way to visualise it. GBS is not contagious. You cannot catch it from someone else, you cannot spread it to someone else. So in that case, how does someone develop it? About two thirds of people who develop GBS had an infection within the preceding six weeks. Usually this is a fever, chest infection, or flu-like illness without detecting a specific infecting organism. If a specific infection is found, the most common is Campylobacter bacteria. Campylobacter is the main cause of food poisoning in the UK, and is typically caught from eating raw or under-cooked chicken. Other specific infections that are proven sometimes to trigger GBS include: Influenza Haemophilus influenzae Mycoplasma pneumoniae Hepatitis A Hepatitis E Cytomegalovirus (CMV) Glandular fever (Epstein-Barr virus) Zika Most of these just cause mild flu-like symptoms or a chest infection. Most people who catch these infections don’t develop GBS. GBS only happens rarely if the infection triggers a sort of allergic reaction of the immune system against a person’s nerves. After Campylobacter infection the risk of developing GBS is under 1 in 1,000. GBS is sometimes triggered by major surgery including transplant surgery. Rarely GBS is triggered by certain biological drugs used for treating cancer or other diseases. GBS can also, very rarely, be triggered via certain vaccinations like influenza, at an estimated rate of 1-3 cases per million vaccinations. In some cases, no obvious trigger is apparent. Remember, it is not contagious. In the rare event of a mass incidence such as that as we saw in Pune in 2025, it is usually caused by a water or food supply contaminated with a bacteria like Campylobacter. What are the symptoms of Guillain-Barré Syndrome (GBS) Early Symptoms Symptoms of Guillain-Barré syndrome usually develop rapidly, starting in the feet and legs before spreading to other parts of the body. These symptoms affect both sides of the body at the same time, usually symmetrically. You may experience some or all of these symptoms: numbness pins and needles muscle weakness poor co-ordination problems with balance pain in back and legs Later symptoms The symptoms may continue to get worse over the next few days or weeks, typically reaching the worst point, or nadir, within two weeks and always within four weeks. In the early stages, GBS is often misdiagnosed - we have heard everything from Stress and Anxiety through to a Stroke or MND. If you're experiencing some or all the symptoms above or below, please mention GBS to your health care team. Some people are only mildly affected, but others may have: difficulty walking paralysis difficulty breathing severe pain weak arms problems speaking or swallowing bowel problems or constipation facial weakness and loss of expression The worst degree of weakness is usually reached within two to four weeks. Some people worsen very rapidly to severe paralysis within a few days, but this is uncommon. The person then stays the same (plateau or stabilisation) for a few days or weeks. Many people are so weak that they are unable to get out of bed. However, it is very important that someone keeps all the joints moving to stop them stiffening up* . A physiotherapist may advise relatives and friends on what they can do to help. Community Advice: if it doesn't cause pain, gently massage and manipulate fingers, and toes, wrists and ankles. Rub a rough towel gently across the skin to stimulate the nerves. If the person you're with is paralysed, check via spoken agreement, or blinking, that this is not causing pain due to skin or muscle sensitivity. Other Symptoms You may also experience Cardiac Arrythmia (irregular heartbeat), very high or low blood pressure and constipation may occur if there is inflammation of the autonomic nerve, supplying internal organs. How is Gullain-Barré Syndrome (GBS) Diagnosed GBS can be difficult to diagnose because several other conditions can cause similar symptoms. Your GP will refer you to hospital if they think you might have it or they are not sure what is causing your symptoms. Examination: A GP or specialist may: ask about your symptoms, such as when they started and whether they’re getting worse. examine your hands, feet or limbs to check for weakness or numbness. ask if you’ve recently been ill, as GBS may follow an infection. ask about risk factors or symptoms of other conditions such as toxins, alcohol, tick bites, diabetes, family history, etc. check your reflexes, such as whether your leg twitches when your knee is tapped, as people with GBS usually have absent or reduced reflexes. Nerve Test (EMG, neurophysiology): To measure how your nerves are working, a specialist clinical neurophysiologist usually does these two tests at the same time: nerve conduction studies (NCS): in which mild electric shocks are given through the skin to activate the nerves and measure the signals travelling along your arms and legs. electromyogram (EMG): in which tiny needles are inserted into several muscles to record their electrical activity. This can show if there is damage to the axons. In people with GBS, these tests will usually show that signals are not travelling along the nerves properly. Lumbar Puncture A lumbar puncture is a procedure to remove some fluid from around the spinal cord (the nerves running up the spine), known as cerebro-spinal fluid (CSF). It involves lying on one side and having a needle inserted into the base of the spine under local anaesthetic. The CSF usually has a raised protein level in GBS. The CSF may also show signs of other conditions with similar symptoms to GBS, such as an infection. Occasionally the diagnosis may not be clear even after the tests, or it may take time to arrange the tests. The diagnosis usually becomes more obvious with time. Treatment for GBS GBS is classed as a medical emergency, and you should be admitted to hospital. Once GBS is identified, it's important that treatment is started as soon as possible. Faster treatment tends to lead to a faster recovery and less residuals in many patients. Most people will remain there for a few weeks, to a few months. In some rare cases, this can be shorter or, unfortunately, longer. The main objective is to stop the immune reaction/attack and reduce the inflammation. Please note, if you have the variant known as pure Miller Fisher syndrome (MFS), you may be more mildly impacted and can, in many cases, recover without treatment. You should be closely monitored during this process, and those with the subgroup, GBS-MFS overlap may need treatment if weakness develops. Those with BBE may also experience this. IVIg The most commonly used treatment for Guillain-Barré syndrome is intravenous immunoglobulin (IVIg). Immunoglobulin is made from donated blood that contains healthy antibodies which can help stop the harmful antibodies damaging your nerves. IVIg is given intravenously, which means directly into a vein, usually over a period of five days, and is most effective if given in the first two weeks following onset. IVIg is not a 'cure' for GBS, but is given to stop the attack on your nerves. The sooner it is administered, the less long term damage/impact you should experience. Once the immune reaction has stopped, then the process of recovery can begin. Plasma Exchange Plasma exchange, also called plasmapheresis, is sometimes used instead of IVIg. This involves being attached to a machine that removes blood from a vein and filters out the harmful antibodies that are attacking your nerves before returning the blood to your body. This is also usually delivered over a period of five days, and is considered most effective during the first four weeks following onset. Both IVIg and plasma exchange are considered to be equally effective and on average lead to earlier recovery than if left untreated. Unfortunately these treatments do not work for everyone. There are currently no other treatments with proven efficacy for GBS. I'm pregnant, can I be treated? Either IVIg or plasma exchange may be given during pregnancy if required. IVIg may be preferred. It can be scary being treated with powerful medications while pregnant. It may help to know that our Chair of the Board of Trustees experienced something similar - GBS while pregnant with her son. She shared her story in this podcast episode: Other treatments during GBS While in hospital, you’ll be closely monitored to check for any problems with your lungs, heart or other body functions. You may also be given treatment to relieve your symptoms and reduce the risk of further problems. These treatments may include: A ventilator if you’re having difficulty breathing. We'll cover that in more detail in a future section. A feeding tube through your nose if you have swallowing problems. Painkillers if you’re in pain. Being gently moved around on a regular basis to avoid bed sores and keep your joints healthy. A thin tube called a catheter in your urethra (the tube that carries urine out of the body) if you have difficulty peeing. Laxatives if you have constipation. Injections to prevent blood clots. Physiotherapy to help you learn to move again and build up your strength. Remember, GBS is not one size fits all. You may be given some, or none, of these treatments. If you're worried about anything that is happening, please ask your doctor or nurse to walk you through the process. Mechanical Ventilation and Guillain-Barré Syndrome (GBS) Mechanical Ventilation and Tracheostomy Around 20% of people with GBS develop weakness of the breathing muscles and need Mechanical Ventilation. Your care team will walk you through every step of this process. The type of Mechanical Ventilation in GBS cases is typically known as Invasive. This means the tools used penetrate the body as opposed to Non-Invasive like Bag Masks that sit on the face/mouth/nose. However, in some cases your care team may find Non-Invasive is suitable for you. An Orotracheal Intubation (OTI) may be used in the short term. This is when a tube is passed through the mouth and into the trachea (the tube that carries air to and from your lungs). This can be uncomfortable, however medication/sedation can be given to lessen the sensation. If you or your loved one is expected to be on Mechanical Ventilation for a long time, then a Tracheostomy may be performed. A Tracheostomy is when an opening in the neck is surgically created to allow for the tubes to be directly inserted into the trachea. This has the benefit of vastly improving comfort for the patient opposed to oral intubation, it requires less sedation, allows for easier clearing of secretions, may allow for the patient to speak/verbalise, and helps patients breathe independently faster. It can be frightening being put on Mechanical Ventilation, and in some cases uncomfortable though your team will do their best to minimise discomfort. It can also be upsetting seeing someone you care about hooked up to wires and cables, breathing for them. Although difficult, please try to keep in mind that this is the best way to get the body breathing independently again. If you have questions about how Mechanical Ventilation feels, and the experience. We can link you with someone who has gone through it via our Peer Support service. Get in touch and we'll get you in touch as quickly as possible: Peer Support Zoe received a tracheostomy during her experience, and is now getting back to playing rugby: GBS and ICU Intensive Care Intensive care is a unit within hospitals, staffed by medical support personnel who are specially trained in the high levels of care required. This is also known as ITU (Intensive Therapy Unit). Patients are constantly monitored, day and night, and everything is done to ensure that they receive the highest level of care possible. Admission to ICU is particularly recommended for patients who are experiencing problems with their breathing, swallowing or coughing muscles. Around 20% of GBS patients are admitted to ICU. The amount of equipment may seem a bit daunting at first, but you will soon become familiar with all the machinery. It can help to know how each item helps recovery, here's a small list of what you may see. If in doubt, simply ask a doctor or nurse to explain what something does. Equipment that may be used on an ICU includes: Ventilator A machine that helps with breathing by pumping air in and out while they are temporarily unable to breath unaided. Breathing tube Placed in the mouth, nose, or through a small cut in the throat (tracheostomy) which makes it more comfortable if ventilation is likely to be needed for longer than a week. This cut will heal up when the person can breathe again for themselves. The inflatable cuff around the bottom of this tube stops fluid and secretions from slipping down the throat into the lung and causing infection. Monitoring equipment Used to measure important bodily functions, such as heart rate (ECG), blood pressure and the level of oxygen in the blood. IV lines and pumps Tubes inserted into a vein (intravenously, iv) to provide fluids, nutrition and medication Feeding tube Placed through the nose down into the stomach (nasogastric tube, NGT) or sometimes through a small cut made in the tummy (gastrostomy, PEG) if a person is unable to eat normally Catheter A tube to drain urine from the bladder Drain Tube used to remove any build-up of blood or fluid from the body Family and Loved Ones This next section is useful for family, partners, and loved ones. Your job is to offer love, comfort and reassurance during this difficult period. Try to remain calm and positive and give lots of encouragement on progress. Keep yourself well informed by the medical staff. Writing a few lines each day in a journal will help you keep a perspective on progress. You can share this over the coming weeks to show how far they’ve come since those early days. For close family, this period of the illness can be an exhausting time of stress, uncertainty and disruption, as you struggle to maintain other commitments alongside frequent hospital visits, so don’t forget to look after yourself and stay well. Remember to eat and drink regularly. When days revolve around hospital visits, it’s easy to put yourself last, but your wellbeing matters too. Taking a moment to nourish yourself helps you stay strong for the long haul. Intensive Care | What to Expect? Intensive Care Comfort The little things you can do will mean a lot. Do they need a hair wash or a shave? Do nails need manicuring? Can you help by massaging their hands or feet? Eating and drinking while you’re visiting might have a negative impact. Picture it from their point of view, they're on a ventilator or being fed through a tube, and you're enjoying their favourite drink. Try to eat and drink before you go in, or stash a bottle of juice in your bag to have the hall to stay hydrated! If the patient feels ill, strong smells may not help. This includes food (above), or strong perfumes/aftershaves/body sprays. Try to wear something neutral if you can. Some patients have pain in the acute stage, others as recovery kicks in, and some have no pain at all. Try to understand what pain they have, if any, and the frequency and type of medication being given to alleviate it. GBS patients tire easily, may be on sedative drugs and may nap quite frequently. They might not want visitors over and above one or two close family members, especially in the early stages following diagnosis and the start of recovery. At the end of your visit, make sure you leave them in the best possible frame of mind. Turn off any device that might cause irritation or disturbance and make sure they have what they need or can attract attention if required. Communication Communication with Staff Understand as much as you can about this condition. If you are the person visiting most frequently, introduce yourself to the doctor in charge of the case and don’t be afraid to ask questions. Some doctors are better than others at explaining things, so let them know if you don’t understand. Get to know the regular nursing staff and ask for a daily update on progress. Physiotherapy can start while the patient is still paralysed. Get to know the physio and keep yourself updated on procedure and progress. They can tell you how you can help with exercises between physio sessions. The more knowledge you have about the condition, the more you can support, and the less anxious you will hopefully feel. Communication with Patient Talk to the speech therapist about communication aids. If facial muscles aren’t paralysed, then lip reading could help. Some people retain finger movement and can write letters in the air or on the palm of the hand. A common method of communication with a patient whose movements are restricted to the eyes and eyelids, is to use a question and answer technique with the patient answering with one blink for ‘yes’ and two for ‘no’. Pointing to the letters on an alphabet board and asking ‘Is it on this line? Is this the letter?’, will help. If the patient is strong enough, they may be able to point at an alphabet board with a finger or pointer attached to a headband. A hospital communication book contains lots of words and images useful in a hospital setting and can pre-empt many questions or comments a ventilated patient is likely to make. Inflammatory Neuropathies UK will send you a free copy on request, that you can leave at the bedside for staff and visitors to use. Another useful tool is an app developed by David Muir, who was ventilated due to muscular dystrophy and became non-verbal as a result. The app is called Passy Muir Trachtools and is free to download in your app store for Apple and android devices. If it is not available on your device, similar apps exist on Android and iPhone such as Look to Speak which relies on eye-movements. The charity, Scope, has some excellent app recommendations for communicating, though may require the use of hands. Some of these are locked behind pricey paywalls, but we found this free option to be excellent: https://theopenvoicefactory.org/ When you find a communication method that works, make sure you share this with staff and other visitors so they can adopt the same practice. Financial Worries Financial concerns may be a cause of extra anxiety, especially if the patient is the main wage-earner. Get in touch with the Social Worker at the hospital who will advise on benefits. Alternatively, Citizens’ Advice offers free expert advice which you access online, or by phoning your local office. Stay in regular contact with employers and make sure you understand the absence and returning to work processes. We discuss returning to work (phased returns, adjustments etc) later in the Info Hub. Inflammatory Neuropathies UK may be able to help through our Personal Grants Scheme with travel costs for frequent journeys visiting a family member in hospital, and for home adaptations should they be necessary. Hallucinations Hallucinations, unusually vivid daydreams or nightmares are not uncommon for GBS patients when very weak. They may be worsened by sedative or painkilling drugs but can also arise in patients without any drug effects. They are not necessarily frightening, but hallucinations can seem very real, and they may be convinced that these are actual events. Talk to them calmly, using their name, and ask them what is happening, and whether they feel afraid or confused. Explain that they are having a hallucination and that you don’t see or hear what they do, but acknowledge their feelings. Tell them you are there, and everything is ok. Gentle patting may help bring them back, and you could try to turn their attention to something they enjoy, by talking about favourite music or a TV programme they like to watch. Locked-In and Feeling Vulnerable Many GBS patients are alert and acutely aware of what is going on. They feel vulnerable, isolated, and locked-up inside their own body. They are likely to feel anxious and frustrated and may exhibit irrational or uncharacteristic behaviour. It will be difficult to come to terms with what has happened, so do not be surprised if they are tearful, bad tempered or panicky. Mentally and emotionally, loss of movement and inability to speak makes a person feel fragile and vulnerable, so be sympathetic and caring whenever you are with them. We have a Peer Support service you may wish to utilise, or look through the stories section on our website. Use these resources to reassure them that this is temporary, and though scary, will pass. Mental Stimulation Hospital stays can be boring, particularly for those with complex needs who may be isolated in a private, or lower capacity room. They may feel socially isolated and frustrated, particularly if they're not able to pick up a book, their phone, or change the channel on the TV. When visiting a loved one, keep them informed. Tell them what day it is as it can be easy to lose track of time which can add to confusion. Talk to them about what's happening in the outside world, and what's in the news (try to keep it light where possible!). Friends and family Encourage friends and family to send cards, texts, and emails with what they're up to. Sit and read them aloud. Check in with the person impacted by GBS about other visitors. Some people are perfectly happy receiving any and all visitors, while others might feel vulnerable or even embarrassed to be seen while unwell. Don't talk over them - include them. Even if they can't respond verbally, include them in the conversation. Try not to start or continue outside conversations that they are not caught up on or involved with. Make use of tech Download films, favourite TV shows, podcasts, audiobooks, and music onto their device or your own and watch or listen together if you can. Old favourite shows, YouTube documentaries, or game streaming on Twitch, can be quite popular as there's less need to follow a plot, and instead they can zone in and out as the mood strikes. Ask the doctors and nurses about leaving tablets, laptops, or phones with media running. Remember though - ask every so often if they want media left running. They may wish everything turned off and to be left in peace. Remember to charge! When visiting, try to remember to plug in their devices, including headphones where applicable, to power them up. Pain Pain is unfortunately common in GBS and may be experienced to a greater or lesser degree at various sites around the body. Medication can and will be provided by the staff in the hospital. As above, pain levels must always be considered when moving the patient and care taken to ensure that all movements are gentle. Pain can and will vary from day-to-day, so hospital staff will monitor and assess needs. Between those times, if you're visiting someone, ask a clear question about pain levels that can be answered with a yes or no signal. Be it verbal, or if they're paralysed/ventilated - with a blink, eye movement, finger movement, or whatever mechanic of movement they have available. Paralysis, movement, and early physio GBS is a paralysing condition. The paralysis is temporary but may be extensive, which can be frightening and hard for the patient to accept. Because of the lack of movement, there may be muscle wasting, possibly leading to weight loss. Gentle physiotherapy, even at the early stages, will help to minimise stiffness of joints and muscles. The nurses will regularly turn the patient to prevent bed sores. Our community has found - as long as it is not painful to the recipient - that gently massaging and manipulating the fingers, toes, wrists, and ankles can be beneficial to recovery. Similarly, stroking hands and feet with a rough towel can stimulate nerves - but should only be done if it does not cause pain. Senses | What are they like? They may have reduced or absent sense of taste and smell, and some patients experience visual disturbance. Hearing is unlikely to be affected, and GBS does not affect the brain, so the patient is usually aware of what is going on around them. However, this may be dampened by sedative or painkilling drugs which are often used to make GBS patients more comfortable. They may find bright lights annoying/painful so you may like to dim the lights, or have a set of sunglasses by the bed. Some patients do experience an increase in skin sensitivity so although contact is important, be aware that rarely even a light touch may cause severe pain which the patient cannot easily communicate to you. If a patient isn't able to verbally communicate, always look to their eyes for visual cues on pain/comfort levels. During the severe phase of the illness, GBS patients can feel very hot or cold and might frequently request a fan to be turned on and off. Some find a damp or cool cloth across their forehead, under their armpits, between their legs also helps - talk to the health care team about this first to ensure no equipment is impacted. Ventilation | how do they feel? Some patients in ICU are fully awake, others are awake but partially sedated with medication to help them relax, and others are kept asleep. If awake, they may be alarmed at the new situation and surroundings, so talk to them calmly and explain what is going on. It may be useful to have a doctor or nurse help explain what is happening. They should not feel sick or nauseas due to the tubes. If they do, a nurse or doctor can give appropriate medications. You may feel upset or scared seeing your loved one affixed to these wires and machines. This is only natural. Please remember this is the fastest, and safest, way to get your loved one breathing independently again. We have a section about Mechanical Breathing you can read as part of this Information Hub. Ventilation | coming off and what's next? As things improve, they will be taken off the ventilator, often starting with just a few minutes and building up gradually. Patients can get quite panicky at the beginning of this procedure as they have become reliant on the ventilator and might not believe that they can breathe again without it. Reassure them that their natural ability to breathe is returning and that this is the start of getting well. Once off the ventilator, it is likely that they will soon be transferred to a general ward for a time before moving into a rehab unit or being discharged home. Moving out of ICU, where patients are monitored continuously, can be stressful in itself, but it’s all part of recovery, and no one will be moved until the medical team is satisfied that they are ready. Mental Health, Well-Being, and Work following GBS This section will provide useful links and sources to help support your mental health after, or during GBS. If you’re a carer or have experienced a loved one going through an illness it can also be a traumatic time, and these links may also help you. We also discuss getting back to work and how to communicate with your employer. Click one of the headers below to access the information directly: Mental Health & Wellbeing Sexual Relationships Getting Back To Work Back To Work: After a Long Absence Back To Work: Making Reasonable Adjustments Back To Work: Phased Return Back To Work: Pay During A Phased Return To Work Click here to return to the main GBS topic hub . Mental Health & Wellbeing With all the changes in your health it is not uncommon to feel anxious or angry. An acute stress reaction is recognised as being a normal part of the process of adjusting to a life change, and it can often help to talk things through with a partner or close friend. However, please seek advice and help from your GP if you are finding it difficult to cope or to sleep, or if you are feeling overwhelmed emotionally. The impact of being severely affected by a sudden, frightening and potentially life-changing condition such as GBS can leave people with symptoms of PTSD (post-traumatic stress disorder). It can develop immediately, or many months or even years after a traumatic event. If you are concerned about low mood, irritability, panic attacks, anxiety, flashbacks, physical sensations such as trembling or sweating, poor concentration or sleeping problems, please talk to your GP about getting some counselling. Sexual Relationships GBS, CIDP and associated inflammatory neuropathies can bring on problems in any relationship, and sexual relationships are not excluded. Dealing with a long-term illness or disability can put a great strain on a relationship, particularly when one partner is partially or totally dependent on the other. Even without the actual physical disability, the emotional upheaval can interfere with a couple’s sex life and this can be difficult to talk about. This can mean that the once close, intimate relationship can become distant and stressful for both partners. Help is available so speak to your GP or a relationship counsellor. Relate https://www.relate.org.uk/ Getting Back To Work When someone is ready to return to work after an absence, the employer should have a procedure they follow, or an Occupational Health service. You can check your workplace’s absence policy for this. Your workplace might have a policy for meeting with employees after absences. Back To Work: After a Long Absence If there’s been a long absence or the employee has an ongoing health condition, it’s a good idea for the employer and employee to meet and: Make sure the employee is ready to return to work. Talk about any work updates that happened while they were off. Look at any recommendations from the employee’s doctor. See if they need any support. If the employee has a disability, see if changes are needed in the workplace to remove or reduce any disadvantages (‘reasonable adjustments’). Consider a referral to a medical service such as occupational health. Discuss an employee assistance programme (EAP) if it’s available. Agree on a plan that suits you both, for example a phased return to work. Back To Work: Making Reasonable Adjustments If an employee has a disability, by law their employer must consider making ‘reasonable adjustments’ if needed to help them return to work. Reasonable adjustments could include making changes to the employee’s: Workstation or working equipment. Working hours. Duties or tasks. For the best course of action, the employer should take advice from: The employee themself. The employee’s doctor. Their Occupational Health adviser. This can help get people back to work quicker prevent any further problems. Back To Work: Phased Return A ‘phased return to work’ is when someone who’s been absent might need to come back to work on: Reduced hours. Lighter duties. Different duties. For example, after a: Long-term illness. Serious injury. Bereavement. The employer or their HR manager and the employee should agree on a plan for how long this will be for. For example, they could agree to review how things are going after a month and then decide to increase the working hours or duties, or they might decide they need to stay reduced for longer. The employer or HR manager should continue to regularly review the employee’s health and wellbeing in the workplace and make new adjustments if necessary. Back To Work: Pay During A Phased Return To Work If the employee returns to their normal duties but on reduced hours, they should get their normal rate of pay for those hours they work. For the time they’re not able to work, they should get sick pay if they’re entitled to it. If the employee is doing lighter duties, it’s up to the employer and employee to agree on a rate of pay. It’s a good idea to make sure this agreement is put in writing. This information is provided by ACAS (the Advisory, Conciliation and Arbitration Service). Further information regarding absence and returning to work is available on the ACAS website: https://www.acas.org.uk/absence-from-work MentalH Sexual Relationships Getting Back to Work After Long Absence Reasonable Adjustments Phased Return Pay Phased Return What happens after GBS? What happens after Guillain-Barré Syndrome (GBS)? What happens next? That’s a big question for a lot of people upon leaving hospital. This section covers everything from rehab to hygiene to pain management. To skip to the information directly, just hit a header below: Support and Rehabilitation Going Home Assessment & Care Plan Residual Symptoms Preventative Measures Hospital Follow Up Physiotherapy and Discharge Hygiene, Cleanliness and Teeth Diet Your Immune System Exercise and Rest Pain Support and Rehabilitation 60-80% of GBS patients can walk independently at 6 months, and the vast majority recover within a year. Of these, some will be discharged straight home without spending time in a rehabilitation unit, but if you need it, support is available to help you recover and adapt to any long-term issues. Specialists who might support you through rehab: Physiotherapist: will help you with movement issues, re-building muscle, and learning to walk Occupational Therapist (OT): will identify potential problem areas and work out some solutions Speech and Language Therapist: will help with communication and swallowing problems Counsellor or Psychologist: someone you can discuss your problems with and help you find ways to cope emotionally Going Home Leaving hospital or a rehabilitation centre and heading home can be daunting and takes a while to arrange. You may need equipment to help with everyday tasks, your home may need adaptations, or you may need a care package in place. There are many people and organisations that can help with this, starting with the occupational therapist and your care team. Your family can also be a great help in getting the information together and speaking to organisations that have in-depth knowledge of what help is available. Assessment & Care Plan If you are likely to have ongoing health and social care needs you should have an assessment carried out by a multidisciplinary team of health or social care professionals such as a social worker, physiotherapist, occupational therapist, psychologist or dietician. You, and a family member if appropriate should be involved in this process. A care plan should include details of: The treatment and support you will get. Who will provide the support. When and how often. Monitoring and review. A named co-ordinator. Who and how to contact. The type of support that might be in a care plan: Community care services. NHS continuing services. NHS funded nursing care. Rehabilitation. Equipment. Support from voluntary agencies. Residual Symptoms It is normal to experience persistent symptoms over the weeks and months after discharge from hospital following GBS. These symptoms vary from patient to patient and include weakness, tingling, aching in the limbs, nerve pain, cramps and extreme tiredness. We have a longer section on Residual Symptoms here . Preventative Measures Nothing can be done to alter the very small risk of a recurrence of GBS. Since GBS can be triggered by an infection, you might think it desirable to avoid all possible exposure to infections. As observed during the COVID-19 lockdown in 2020, this may be possible, but involves sacrificing normal life to a degree that is neither practical nor desirable. Having had GBS does not increase the probability that you will get it again. Hospital Follow Up There is a wide range of different practice regarding hospital follow-up visits. Unless you are taking medicines for other conditions, or unless you are being prescribed medicines for pain or complications, it is unlikely you will need to attend hospital as an outpatient following discharge. The person you are likely to need to see is a community physiotherapist, rather than a neurologist. Some neurologists may ask you back for a follow-up appointment to see how your recovery is going, but most do not, because you no longer have an ongoing neurological condition and their role in your treatment has come to an end. Physiotherapy and Discharge If you have difficulty accessing physiotherapy, but feel it would benefit you, or if you find yourself on a lengthy waiting list, please contact the office at Inflammatory Neuroapthies UK. Hygiene, Cleanliness and Teeth Personal cleanliness for those who cannot care for themselves fully can be a problem. Many returning home from hospital may have reduced use of their hands, usually temporarily, but sometimes permanently. Many will be unable to wash themselves, brush their hair, use the lavatory, wipe their bottoms, brush their teeth, cut their nails etc. It is important for both hygiene and self-esteem that these matters are attended to by a carer. Through no fault of their own, many people’s teeth are neglected during periods of serious illness. Once you have returned home, arrange an appointment with your dentist as soon as possible. If you have difficulty attending a dental practice, enquire about community dental services. Using an electric toothbrush can be helpful if you have residual weakness in your hands. More advice can be found on the British Society for Disability and Oral Health website . Diet During illness, nutritional needs are at their peak, but it is not unusual for patients to lose their appetites or taste for food. Worry and fear often accompany illness and can also contribute to loss of appetite. Good nutrition can be a powerful ally in the process of recovery, so if you need advice, ask to speak to a nutritionist. If taste has been affected, this will usually improve with time. Plastic utensils can be used if bitter or metallic tastes are experienced whilst eating. Sometimes taste changes can be related to medications, but drugs should not be discontinued without first consulting your GP. Try to eat a healthy, balanced diet and keep consumption of sugary and processed foods, and drinks that are high in caffeine or alcohol to a minimum. There is some excellent advice on nutrition on the NHS website. Some in our community enjoy an anti-inflammatory diet, finding it helps with residual nerve pain or weakness. Some choose to avoid, or cut back on, alcohol as they find it can make residual symptoms feel stronger. Your Immune System Although caused by your immune system malfunctioning, GBS does not weaken or damage your immune system, and having had GBS does not mean that your immune system is compromised. However, many people feel a bit rundown when they’re recovering from a lengthy illness, and you may be more prone to pick up colds and other bugs until you’re back to full fitness. Regular exercise and maintaining a healthy diet and sleep regime will all help during recovery. There is anecdotal evidence, and lots of hype surrounding supplements and alternative remedies, but very few are known to have real benefits. Most people are able to get the vitamins they need from their diet, but if you wish to take dietary supplements, please talk to your doctor first as they will not only be able to advise you on anything that may help you during recovery, but can warn you against any that may negatively impact you. Exercise and Rest During the recovery stages, physiotherapy, occupational therapy (OT) and speech and language therapy play a vital role in the rehabilitation process as well as maximizing functional ability. At some point during rehabilitation the rate of recovery will plateau, and it is often at this point that patients will be discharged from all the support services on which they may have relied. It is also possible that patients may be placed ‘on review’. This means that you may be followed up at regular intervals and can telephone for advice in-between but don’t attend the clinic as often as you did before. The role of exercise in the ongoing rehabilitation for patients with GBS is still to some extent unclear and clinical trials are being carried out to improve our understanding. However, there is evidence that where weakness and fatigue are problems, participation in regular graded exercise can be beneficial. Exercise can help to improve your muscle strength and reduce your overall sense of fatigue. It can also aid sleep and support mood through the production of endorphins. Other benefits include helping your heart and lungs remain healthy and making you feel more positive about yourself. However, it may take weeks or even months before you feel some of the benefits, so it is important to pace yourself. You will find lots of exercises online, including seated exercises, or you could ask your GP or physiotherapist about how to start regular exercise and what exercises might be right for you. Recovery from GBS is not a race, and you also need to get plenty of rest, but try to avoid napping and develop instead a regular sleep pattern. Visit the NHS website for advice on exercise: https://www.nhs.uk/live-well/exercise/ and also for advice on sleep: https://www.nhs.uk/live-well/sleep-and-tiredness/ Pain Some people do not experience pain, but even if they had none during the active phase of the syndrome, it may occur during the recovery phase. The problem tends to resolve as recovery proceeds, but it can become an ongoing issue. Being in pain naturally impacts on mood and the ability to cope with everyday situations. Your family and friends might expect you to be ‘back to normal’ once you are discharged from hospital, not realising that in many cases, there is still a very long way to go in terms of recovery. It is important to talk to your family and friends about this, so that they understand what you are going through and why you might be irritable and difficult to live with at times. Other Sources of Support: Pain Concern https://painconcern.org.uk/ British Pain Society https://www.britishpainsociety.org/ Pain Association Scotland https://painassociation.co.uk/ Welsh Pain Society https://www.welshpainsociety.org.uk/ Pain Relief Foundation https://painrelieffoundation.org.uk/ Pain Relief Ireland https://painreliefireland.ie/ Support and Rehab Going Hom Assessment and Care Plan Residual Symptoms Preventative Measures Hospital Follow Up Physio Hygiene Diet Immune Exercise Pain Residual Symptoms and GBS It is normal to experience persistent symptoms over the weeks and months after discharge from hospital following GBS. These symptoms vary from patient to patient but are often felt particularly strongly in the hands and feet. Below we have a list of residual symptoms we find are frequently mentioned. This is not an exhaustive list, you may experience other residual symptoms not listed. Nor should you expect to experience each symptom (if any) on the list. Aching in limbs Clawing of hands/toes Cramp Fatigue Foot drop Loss of balance Nerve Pain Numb/Loss of Feeling Tingling/Pins-and-Needles Weakness It is normal for these symptoms to fluctuate a bit, being worse when you are particularly tired, stressed or affected by illness, such as a cold, sore throat or flu. Timeline For most people, these side effects gradually decrease over time. There is no fixed or standard timeline for recovery. It can help to keep a diary of your residual symptoms - noting date, symptom, and severity. This way, if your recovery is slow, you can still see visual improvement. During this time, you may also experience some of the above sensations returning/strengthening. Fluctuation is natural, and is very unlikely to be a recurrence of GBS, however, if you are concerned please consult a doctor for peace of mind. I haven't fully recovered Unfortunately, around 15% of people will not make a full or 'good' recovery, and will experience permanent or long term mobility and dexterity problems. If this happens, there may be a need for a wheelchair or another mobility aid. Persistent pain and fatigue may also be a long term issue that needs to be managed. If you find you have a residual symptom that is not improving, and is causing a significant negative impact in your life (particularly pain, or mobility), please consult your GP or Consultant to ask about management strategies. You can also join our online Zoom support calls to talk with others with experience of residuals, or arrange 1-to-1 Peer Support with someone we can match you with. If residuals are impacting your mood negatively, we also have an Emotional Support service you may wish to access. Gullain-Barré Syndrome Advice for Carers Hospital discharge can bring mixed emotions. Of course you’re glad to have your family member home, but it is quite normal to feel a bit daunted by what lies ahead, especially if you are now the main carer. On this page we have some practical suggestion that can help you in this new role, and some help contact details and/or resources you may wish to access. Quick Fact: Informal/Unpaid Carer The Department of Health and Social Care has described an informal/unpaid carer as: “… someone who provides unpaid help to a friend or family member needing support, perhaps due to illness, older age, disability, a mental health condition or an addiction” Ask for a needs assessment for the person you’re caring for You need this before the council can recommend services such as equipment, home adaptations, help from a paid carer, etc. Get a carer's assessment This can be requested at the same time as a needs assessment, via social services at your local council. Don’t be afraid to ask for help Ask family and friends (shopping, respite, etc), and contact carers’ organisations or Citizens Advice for benefits advice and other support. Look after yourself Eat a healthy diet, maintain a regular sleep pattern and make time for exercise, preferably in the fresh air or at your local gym or pool, away from the care setting. Remember to rest Put some activities on hold. Take some time for yourself by arranging respite care from a friend or relative, or through social services. Recognise limitations Both those of the person you’re caring for and your own. Let them try to do things for themselves if they are able, but bear in mind their safety and yours. Look after your mental health Talk to each other about your experiences and frustrations during illness and recovery. Talk to your GP if either of you is struggling. Be mindful of risks Be aware of temperature (cooker, iron, hot bath water, hot drinks), risk of falls due to poor balance, and dropping or spilling things due to weakness. Diet and exercise If appetite and taste are affected, ask about vitamin supplements to help maintain dietary needs. Ask the community physio about exercises to do between visits. Don't lose sight of your relationship Whatever your relationship is to the person you’re caring for, make time for it. Do things together that you both enjoy and that feel ‘normal’. Get in touch with Inflammatory Neuropathies UK We provide information and support, organise peer support via phone or video link, virtual group chats, and run an active and supportive Facebook group. Hospital discharge can bring mixed emotions. Of course you’re glad to have your family member home, but it is quite normal to feel a bit daunted by what lies ahead, especially if you are now the main carer. On this page we have some practical suggestion that can help you in this new role, and some help contact details and/or resources you may wish to access. IN simple terms: Informal/Unpaid Carer The Department of Health and Social Care has described an informal/unpaid carer as: “… someone who provides unpaid help to a friend or family member needing support, perhaps due to illness, older age, disability, a mental health condition or an addiction” Other sources of support Looking after someone you love doesn’t have to mean struggling alone. There are organisations out there who offer advice and practical support to carers, so reach out and see what help is available to you. NHS advice Carers UK Carers Scotland Carers Wales Carers Northern Ireland Family Carers Ireland Carers Trust Help for young carers Citizens Advice UK Citizens Information RoI Find your local social services England Scotland Wales Northern Ireland Republic of Ireland My child has been diagnosed with GBS My Child has been Diagnosed with Guillain-Barré Syndrome (GBS), what do I do? Although more common in adults, Guillain-Barré syndrome can affect anyone of any age. The encouraging news is that children tend to be less severely affected than adults, and in most cases make a very good recovery. Even so, it is distressing for any parent to see their child debilitated by illness, and we hope that knowing a little bit about what to expect may help, especially in the early stages following diagnosis. Don’t forget your child needs to be told what is happening and will be reassured by familiar faces and voices. If you would like to talk to another parent of a child affected by GBS, please contact Inflammatory Neuropathies UK, and we will arrange contact with one of our support volunteers. The following information has been adapted from TheSchoolRun : an online resource for parents of children at primary school More detailed information is published online by Contact a Family. If you want to access a specific topic in this section immediately, click the headings below, or click here to return to the main GBS topic hub . How is Your Child’s Condition Managed? What is Paediatric Intensive Care? Things You Can Do To Help Rehabilitation & Outcome Going Home Back to School BTS Catching Up With Work BTS Fitting In BTS Individual Healthcare Plan How is your Child's Condition Managed? Diagnosis, treatment and recovery will follow a similar path for children as for adults, and are covered elsewhere in this booklet. Paediatric services tend to be very self-contained, and you will have access to support that you would not experience in an adult setting. The following information is specific to differences between adult and paediatric services. It is important your child is treated in a centre familiar with GBS and with intensive care facilities should they be required, so they may be moved to a hospital you do not routinely use. Most of your child’s care will be ‘supportive’ for breathing, feeding, bowel or bladder functions. Physiotherapy is needed to ensure good joint mobility and to keep the chest clear. People likely to be involved in your child’s care: you, your child and your family paediatric nurses and nurse practitioners, doctors and neurologists paediatric intensive care nurses and doctors neurophysiologist, who does the nerve conduction study physiotherapists, to help with movement and breathing speech therapist, to help with feeding and communication occupational therapist, to help maximise recovery clinical psychologist Other staff you may meet could include dietician, health care assistants, family liaison nurses, play specialists, chaplains and interpreters. What is Paediatric Intensive Care? Around 10% of children with GBS will become so weak that they cannot breathe without the support of a ventilator. Understandably this can be a frightening situation for a child who is still fully aware of everything going on around him or her. Parents and carers must provide the child with all the positive support needed to avoid unnecessary trauma. Things You Can Do To Help Even if they can’t respond verbally, your child will be conscious (unless placed in an induced coma for a time to reduce stress and anxiety) and can hear what is being said. Talk about things that matter to your child (a pet, the football results, family events, messages from friends, etc). Bring a favourite soft toy for them to cuddle. Your child may become extremely frustrated especially if he or she cannot speak. Try to work out ways of communicating, such as picture cards that they can respond to by touch, blinking or pointing with their eyes or pointer on a headband. Ask the paediatric team for support in communicating with your child if they are non-verbal. Rehabiliation and Outcome The majority of children make a full recovery from Guillain-Barré syndrome without any lasting signs of having had the condition, but a small number may have some persisting problems, such as weakness of the hand and foot muscles. Most recovery is seen in the first six to twelve months, but gradual improvements can continue for five years and beyond. Keep in touch with school, and once your child is on the road to recovery, ask their teachers for any resources they can access to help them catch up with what they would have been doing at school. Going Home Although recovery can be a long and drawn-out process, there are ways of helping children to cope. Doctors can prescribe medication to counter pain. Rest, relaxation, massage and physiotherapy are all helpful. Occupational therapists will discuss the suitability of the home environment and tell you how to access any specialised equipment that might be needed. Hydrotherapy and swimming can be very beneficial, as the water is weight-bearing allowing freer movement. Consider going for a family bike ride once your child is strong enough, and even look at an activity such as horse-riding, as this can help with balance as well as the psychological benefits associated with being around animals (contact ‘Riding for the Disabled’, https://www.rda.org.uk/ ). Exercise is much easier when children are engaged, so it helps a lot if it is something fun and enjoyable. Since children are usually very active and move around without thinking, observing what they do naturally is a good indicator of their capabilities. Your child may feel the cold and get tired more easily, or they may lose their appetite or complain of things tasting different. The trauma of GBS may also have an effect on their mood or behaviour. They may become frustrated, angry and upset at not being able to do everything that their friends can, and that they could do before. All of this is normal. It is important to listen to them, understand what they are feeling, and try to find things that will help. Be patient. These problems are temporary and will improve with time, but talk to your GP if you are concerned and feel further support is needed. Back to School Thousands of children live with health issues that involve long periods of absence from school. At some stage, these children will face the unenviable task of going back to school and reintegrating into their former class and its usual daily routines. Catching up with work and friendships can often be difficult, but a good school will do all it can to ease your child’s passage back into school life. Returning to School: Catching Up With Work When your child is ready to return to school, the thought of catching up on weeks of missed work can be daunting. But, says Lesley Black, special educational needs (SEN) advisor at the charity Contact a Family, ‘no school will want to overwhelm a child who has been unwell or dealing with difficult circumstances by expecting them to do extra homework or catch up on work during playtimes.’ Schools may prioritise catching up with work in maths and English – the core subjects – over other subjects. It’s quite common for schools to have small groups of children who need support with numeracy or literacy, and children who’ve been away from school will often slot into one of these. They may be given extra one-to-one help by a teaching assistant (TA) to help them catch up. If you want to give your child a boost at home, speak to their teacher about how you can best help, such as games-based learning activities online that consolidate maths and English skills, or practical things you can do like reading aloud and cooking together. However, be aware that if your child has been ill they might find the school day very tiring, and may not be up to doing much homework. Returning to School: Fitting In Despite the fact that schools are under increasing pressure to ensure children achieve, your child’s school is likely to be far more concerned about their wellbeing as they return to school. Your school should help your child to keep in touch with their classmates while they’re absent, for example through visits, emails, letters or video calls. They also have a duty to help your child reintegrate once they’re well enough for school. Your child may feel awkward if they’re bombarded with questions about why they’ve been away. Sometimes, they’re so reluctant to draw attention to themselves that they put up with discomfort or distress rather than asking a teacher for help. Some children, however, are happier with everything out in the open and even like to stand up in front of the class to explain what’s been happening. If your child has a specialist nurse or a social worker, they may be happy to visit the class, either with or without your child, to answer their classmates’ questions. ‘It’s important that schools are sensitive about your child’s needs when they’re considering what information to share with their classmates and the wider school community, and that they make sure your child has someone they can ask for help,’ Lesley says. ‘This could be a school counsellor or the special educational needs co-ordinator (SENCO) rather than their class teacher.’ Returning to School: The Individual Healthcare Plan A key part of your child’s return to school after illness may be the creation of an Individual Healthcare Plan . This is a formal document that sets out things like: What their condition is. What medication they take. Who, in the school community, can administer their medication. What to do in an emergency. Arrangements that need to be made to enable your child to attend school, such as a quiet rest area . ‘You and your child should be central in drawing up the individual healthcare plan,’ says Lesley. Other people involved in your child’s care may also be involved, such as their GP, paediatrician or specialist nurse. The plan will identify if anyone needs to be given special training to administer medication or otherwise help care for your child at school. If so, someone from your child’s medical team is likely to arrange this. The plan should be reviewed regularly, and at least once a year. Depending on the level of recovery or any residual disability, it may be necessary for your child to return to school in a wheelchair, and school facilities should be checked to make they are suitable for your child’s needs. A welfare officer from the local education authority (LEA) can visit to arrange adaptations, and can sometimes provide equipment for use in schools. Like any other institution, the ability of the school to cope depends on the willingness of those involved, as much as the building’s design and facilities. Before your child returns to school, arrange a consultation with headteacher and SENCO to explain what if any limitations they have. How is your Child's Condition Managed What is Paediatric IC Things You Can Do To Help - Child Child Rehab Child Going Home Back to School What is the Advice on GBS and Vaccinations? What is the advice surrounding vaccinations and Guillain-Barré Syndrome (GBS)? Professor Michael Lunn MA MBBS FRCP PhD, Consultant Neurologist and Professor of Clinical Neurology, National Hospital for Neurology and Neurosurgery, Queen Square, London advises: “One vaccine is not the same as another. The only reason that one advises against flu vaccine in someone with GBS is if they actually had GBS in the 6 week window after a flu vaccine and then only out of an abundance of caution which is not based on any real science. The rate of GBS after flu vaccine in all assessed years after 1976 has been about 1 per million and no study has linked vaccination to recurrence of GBS or CIDP. COVID vaccine is nothing like flu vaccine. Although there have been a small number of people who have developed GBS for the first time following the COVID vaccine, the risk of serious illness and complications from COVID are greater.” Most vaccinations do not cause GBS. The influenza (‘flu) vaccine changes every year. In some years this has caused a few cases of GBS, most notably in 1976. The risk remains extremely small. For every one million people who receive an influenza vaccine, only about one case of GBS is caused. In most years, influenza vaccine does not cause GBS at all. Although some neurologists advise people to avoid vaccinations for 6-12 months after onset of GBS, this is purely precautionary. Several scientific studies have shown very little or no causal link between vaccinations and GBS, concluding that vaccinations do not trigger a recurrence and are as safe for people who have had GBS as for anyone else. GBS is a one-off condition that is unlikely to happen again. After recovering from GBS, the risk of ever developing GBS again (many years later) is about 1 in 30 (2 – 5%). The risk of triggering GBS from the annual seasonal flu vaccine is far lower than the risk from flu infection. Most people don’t need a flu jab. However, if you are in an at-risk group, or you live or work closely with people for whom flu might be severe or life-threatening, then you should be vaccinated, to protect yourself and others. Public Health England states in The national influenza immunisation programme 2020 to 2021 that: ‘Previous GBS is not a contraindication to influenza vaccination. A UK study found no association between GBS and influenza vaccines although there was a strong association between GBS and influenza-like illness. A causal relationship between immunisation with influenza vaccine and GBS has not been established.’ This is further supported by the Medicines & Healthcare products Regulatory Agency (MHRA) which states: ‘The balance of epidemiological evidence is not sufficient to confirm that currently used influenza vaccines are causally associated with the development of GBS. As GBS also occurs naturally in the vaccinated population, and particularly because flu-like illness is a known risk factor for GBS, a number of cases are reported each year in temporal association with vaccination. This does not mean the vaccine was the cause. Recent data supports the findings made in previous studies that an influenza vaccination may trigger GBS in fewer than 1 in 1,000,000 people vaccinated. There were approximately 14,000,000 people vaccinated in the UK during 2019/20 and there were 11 reports submitted through the yellow card scheme for the same period. These may be true side-effects, or they may be due to concurrent diagnosed or undiagnosed illness, other medicines or they may be purely co-incidental events that would have occurred anyway in the absence of therapy. Based on current evidence, the MHRA findings are that these reports do not indicate a causal relationship between influenza vaccine and GBS.’ Inflammatory Neuropathies UK adds that this is supported by independent research showing colds and flu-like illnesses are triggers for GBS. The seasonal flu vaccination is a very low risk trigger, with approximately 1 case of GBS triggered per 1,000,000 vaccinations compared with 1 case of GBS per 60,000 cases of flu(1) . A large retrospective study(2) entitled Vaccines and the risk of Guillain-Barré syndrome was published in 2020. In comparing 1,056 cases of GBS with 4,312 controls, Chen et al found no increased risk of GBS or its recurrence among either children or adults within 180 days following vaccinations of any kind, including influenza vaccination. Therefore, previous case reports of GBS shortly after receiving several other vaccines were probably merely coincidental. On vaccinations in general, our Medical Advisory Board advises: DON’T have unnecessary vaccines for travel but DO have all travel vaccines that are recommended for the particular area you are travelling to. DO have all vaccines that are ‘necessary’. This includes the flu vaccine (if you are in an at risk group), MMR, DTP, HIF, COVID-19, etc. There are monitoring programmes ongoing so a link would be picked up if it occurred. COVID-19 is a more serious disease than influenza and more easily caught. Most people with GBS or CIDP should receive any of the COVID-19 vaccines, except perhaps people with a history of severe allergy. Vaccines currently in use are amongst the safest medicines available. However, there is no simple ‘yes or no’ answer, and each person must weigh up the risks of not having a vaccination against the very small possible risk from having it. Having relatively mild side effects such as numbness and tingling is quite common following a vaccination, and is almost certainly nothing to be concerned about. If you have had GBS in the past, or if you have an associated chronic neuropathy such as CIDP, a vaccination might cause a slight ‘flare-up’ of symptoms due to your immune system being stimulated. Most will only last a few days, but if they last longer than this, or if symptoms get worse or start spreading, then I would suggest contacting your GP. Anyone can report side effects of medication or vaccines, regardless of severity, and if you would like to do so, please follow this link: https://coronavirus-yellowcard.mhra.gov.uk/ (1) Jeffrey C. Kwong, Priya P. Vasa, Michael A. Campitelli, Steven Hawken, Kumanan Wilson, Laura C. Rosella, Therese A. Stukel, Natasha S. Crowcroft, Allison J. McGeer, Lorne Zinman and Shelley L. Deeks The risk of Guillain-Barré Syndrome following seasonal influenza vaccination and influenza healthcare encounters, a self-controlled study. The Lancet Infectious Diseases, Vol. 13, No. 9, p730–731 Published: June 28, 2013 (2) Chen, Y., Zhang, J., Chu, X. et al. Vaccines and the risk of Guillain-Barré syndrome. Eur J Epidemiol 35, 363–370 (2020). Other Acute Inflammatory Neuropathies These are not variants of GBS but different diseases. We include them here because they are ‘acute’, meaning starting rapidly within weeks, and caused by nerve inflammation. Brachial Neuritis Brachial neuritis, also known as neuralgic amyotrophy or Parsonage-Turner syndrome, is a localised severe form of peripheral nerve inflammation causing pain then weakness in one shoulder, arm or hand. It affects 1-2 people per 100,000 per year and occurs unexpectedly. Typically it starts suddenly with sharp, severe pain in one shoulder or arm. The pain improves after a few weeks leaving weakness (and perhaps numbness) in the same place. The muscles become thin. It affects nerves in the brachial plexus, which is a bundle of nerves in the shoulder travelling between neck and arm. It usually affects just one side, but sometimes affects both arms, or the diaphragm (a breathing muscle) and almost never the legs. The cause is unknown except sometimes it is genetic. It typically improves slowly over 1-2 years but may leave some permanent weakness. It usually never happens again. How is Brachial Neuritis diagnosed? Brachial neuritis is difficult to diagnose early because the pain is often thought to be a shoulder joint injury or nerve compression. It is diagnosed by neurological examination, usually supported by an EMG test. An MRI may be needed to rule out other conditions. Your GP may refer you to a hospital specialist. Treatment There is no proven treatment. Painkillers are usually needed. Corticosteroids may be given if it is diagnosed early, but probably don’t help after the pain has gone. Physiotherapy often helps. Over time, brachial neuritis will improve on its own. Vascultic Neuropathy Vasculitis is a disease causing inflammation of blood vessels. This may block the flow of blood which carries oxygen, leading to damage. It can affect any organ in the body often the kidneys, lungs, heart, bowel, skin, and sometimes the peripheral nerves, called Vasculitic Neuropathy. This may happen with or without vasculitis in other organs. What are the symptoms of Vasculitic Neuropathy? Vasculitic Neuropathy develops more slowly than GBS and is usually less severe. Classically there is pain, numbness and weakness in one hand or foot, which starts suddenly and persists. Then over the next few weeks or months a similar problem happens in other parts of the body, known as ‘mononeuritis multiplex’. These areas can merge so it affects both feet and hands. It may cause a floppy foot (‘footdrop’). Symptoms are variable but often include: Unlike many of the other peripheral neuropathies, vasculitic neuropathy can be very asymmetric and affect one limb more than the rest. How is Vasculitic Neuropathy Diagnosed? Blood tests usually show markers of inflammation or antibodies. Vasculitis may be diagnosed in another part of the body. Nerve conduction tests (EMG) can show neuropathy. Some people need a biopsy of nerve or muscle. Treatment The inflammation is usually suppressed by a combination of corticosteroids and strong immunosuppressive treatment. Treatment may be led by a rheumatologist, or kidney specialist. Nerve pain can be treated with a number of medications, some of which were originally developed for treating depression or epilepsy. Sources of support For more information about this condition contact one of the following charities: Vasculitis UK: www.vasculitis.org.uk Versus Arthritis: www.versusarthritis.org British Lung Foundation: www.blf.org

Volunteer We are a small charity and, as such, really depend on the incredible help we get from our volunteers. This amazing team of people work with us so we can better raise awareness, reach and support more people and, ultimately, realise our goals. Most of our volunteers have lived experience of GBS, CIDP, MMN or a related condition, but, in order to do more, we need more people to help. Could that be you? If you feel you can help then please get in touch - there are a myriad of ways volunteers can contribute to our work; a few of which are listed below. Providing Peer Support Connecting with people impacted by GBS, CIDP, and other Inflammatory Neuropathies. Using your lived experience to provide information, advice, and guidance. Facilitating and Supporting a Local Get Together Organise a space where people can come together and mutually support each other over a cup of tea. Being a Local Champion Be our representative in your local area, You can do this by linking into local clinical facilities and community groups and supporting local people impacted by any of the Inflammatory Neuropathies. Being an Online Champion Be our representative online. Support those impacted by GBS, CIDP, or other conditions in online forums and meetings. Raising Awareness Word of mouth speaks volumes. Support us by raising awareness about Inflammatory Neuropathies - and us. The more people know, the more they too can help. Research Support Data is king. And we need your help in tasks like data collection. As you can see our needs are very varied. Just choose what you feel you would enjoy the most. We will do all we can to help by being super flexible regarding time commitments and also helping you by providing the following: Induction and training Ongoing support and supervision An annual appraisal Regular volunteers meetings and updates Resources and materials Access to our team when you need them We hope you will join us. If you are interested, simply fill in the form below.

Driving & Travel Driving Read More Travel Read More Driving If you have a driving license, you must tell the DVLA if you have, or are recovering from, Guillain-Barre syndrome. This also applies to CIDP and all associated inflammatory neuropathies. "You can be fined up to £1,000 if you don’t tell DVLA about a medical condition that affects your driving. You may be prosecuted if you’re involved in an accident as a result." - gov.uk. Click below to access a CN1 form,(car or motorcylce), or CN1V (bus, coach, or lorry). Each form is around seven pages long, and should not take you long to fill in. If you have any difficulties, please reach out to us for some support. gov.uk If you’re in Northern Ireland you must contact the DVA, you can find their address via: Driver and Vehicle Agency and if you're in the Republic of Ireland contact the NDLS via: National Driver License Service Blue Badge/Bus Pass/Train Tickets While you're filling in a CN1 or CN1V form, take some time to visit this page that gives you useful advice and links to apply for a Blue Badge in England, Scotland, Wales, and Northern Ireland. Blue Badge It may be that your condition or symptoms has prohibited you from driving. In which case, help is available in the form of a disabled persons bus pass. Apply for a Bus Pass There is also reduced train travel if you are eligible. Disabled Persons Rail Card Adaptions So you're back behind the wheel - fantastic! But you may not feel totally comfortable yet, it may be that your car or vehicle could do with some adaptions. The charity Driving Mobility offer assessments on your capabilities, but also provide information on adaptions like hand controls, or even upgrading to a wheelchair accessible vehicle or automatic transmission. Visit Driving Mobility Travel We are often asked to suggest a travel insurance policy for people with a pre-existing medical condition. Although we are unable to recommend or endorse a specific insurance provider, we hope the following information may help you find an affordable policy that is right for you. GBS Guillain-Barre syndrome or GBS (also known as AIDP), is an acute condition. Acute variants include Miller Fisher, AMAN and AMSAN. Although some people are left with residual effects following recovery, the syndrome itself runs a finite course lasting no more than around six weeks, so unless you were diagnosed in the last few weeks, this is something you have had and have recovered from, even if your recovery is not complete. If you have had GBS in the past, it should not be declared as a pre-existing medical condition because you do not have it now . It is worth noting that a person who has had GBS is considered to be no more at risk of a recurrence than anyone else is of developing GBS for the first time. In some cases, you may have to declare GBS if you were ventilated - but only if the insurance policy lists, "any respiratory conditions relating to the lungs or breathing". CIDP, MMN, Lewis Sumner.. Some variants, such as CIDP, are chronic and often follow gradually progressive or a remitting and relapsing course. Some insurers may have CIDP showing on their systems as ‘Inflammatory Demyelinating Polyneuropathy’. Chronic variants include Multifocal Motor Neuropathy (MMN), Lewis Summer / MADSAM, Paraproteinaemia / PDN and CANOMAD. If you have a chronic variant of the syndrome, then this would be classified as a pre-existing medical condition because you have it currently. It is possible to ask the underwriters to exclude a certain medical condition but bear in mind that you will not be covered for any pre-existing condition that is either not declared or excluded from the policy . For detailed guidance on what you should look for in an insurance policy for travel abroad, please go to the GOV.UK website .

Share your experience One of the hardest challenges Inflammatory Neuropathies UK has ahead of us is getting our voices heard. There are thousands of other important charities all competing for the same eyes and ears. Unfortunately, we don't have a huge bank of pictures to use on our socials, and often have to use stock images. These don't authentically tell your stories, and because of that, they get lost in the mix (case in point, just look at the header image of this page!). To stand out we urgently need: Real experiences A media bank of real people to use on our socials Heart-pulling quotes And things to make the general public stop and look again If you've got a story to tell about your experience with an inflammatory neuropathy - be it diagnosis to treatment, or life with it now, please get in touch. We can host it as a blog. Or, if you can provide some images for use, again from treatment through to life now (even if it's a big cheesy selfie), we'd gratefully receive them. Send an email to hello@inflammatoryneuropathies.uk Please also read and (if you agree) accept our consent form so we can use these images.

Financial Personal Grants Read More Benefits Read More Continuing Healthcare Read More Personal Grants Dealing with a condition can have so many consequences. It can impact on your finances so further adding to the worry and stress. Maybe it’s simply extra fuel bills or parking costs from all the hospital visits or it could be having to buy special equipment to facilitate life at home. It all adds up and at a time when you may not be able to work. We have a grant that is specifically for these purposes. To find out if you are eligible, fill in the form below. Personal grants can be applied for by residents in the United Kingdom and Republic of Ireland however, we are unable to accept applications from overseas. Requests for a personal grant will only be considered if the hardship is due to, or has been aggravated by GBS, CIDP or an associated inflammatory neuropathy. Grants are not awarded where the support can be obtained through a statutory body or process. Grants can be made up of smaller grants paid over a period of time or as a one off payment. Some examples of grants: Medical or other equipment (possibly on loan) – such electric wheelchairs or adaptable toilet seats Adaptations to homes – such as railings, or a shower grab rail payment of travelling expenses – such as parking charges for visiting patients in hospital, or train tickets Where the grant is for the provision of equipment, the equipment would become the property of the applicant rather than the charity. The applicant is responsible for the ongoing maintenance of the equipment and any problems should be taken up with the supplier/manufacturer. Recurring household bills or debts cannot be considered – for these you should seek help from your local Social Services, Citizens’ Advice Bureau, Citizens’ Advice Scotland, Citizens’ Information Republic of Ireland, the consumer Credit Counselling Service or the National Debtline. How to apply Please complete this Application form (which also includes guidance notes) All information supplied by you will be treated by Inflammatory Neuropathies UK in confidence. If the application form is a little daunting, don’t worry. Either email us directly on hello@inflammatoryneuropathies.uk or fill in the contact form at the bottom of the page and we can provide help. Completed Application Forms should be sent to: Inflammatory Neuropathies UK Glennys Sanders House, Pride Parkway, Sleaford NG34 8GL For any queries please email hello@inflammatoryneuropathies.uk Benefits and Welfare Worried about money? Well we’re here to help. Dealing with a health condition is hard enough, but changes in health can often lead to financial issues, when you can’t work, or extra costs mount up. We can’t fix everything, but please don’t struggle alone. Reach out to us and we’ll do what we can to support you. Illness and health conditions can have a huge adverse impact on our financial wellbeing. Very few of us know anything about dealing with debts or benefits until we’re forced to seek help, so it’s extremely important that you get professional advice and support as soon as possible as this can make a big difference to your circumstances. You can reach out to us for help, or take a look through this page to see what you can do yourself or what other help is available. If it is all too much, you can always come back to us and ask us to help. Book a meeting with an advisor How we can help We don’t know everything, but we can provide some advice and support. If we don’t know the answer then we can help you find someone who does. Please read the information below, and follow the steps for money advice, grants, and budgeting support. There are also some links to information on benefits you may be entitled to. The steps to take to get the right financial support If you’re unwell through a disability or long-term health condition then follow this handy step by step guide. 1. Complete a budget (this is an excellent one from the Money Advice Trust - CLICK HERE If you have any emergencies or priority debts please get help with these first (and urgently). Priority debts are: Rent, mortgage and secured loan arrears Magistrates or other court fines Council tax arrears Utility bill arrears Phone and internet arrears Unpaid income tax, VAT Tax credit overpayment and/or child maintenance arrears TV licence arrears Hire purchase payments Get all the paperwork you have for these. Credit cards, overdrafts, loans or other forms of credit are NOT priority debts but it’s good to get as much paperwork as you can for all of these too. For free, professional confidential telephone based help and advice you can call National Debtline on 0808 808 4000 , or the Help through Hardship Helpline on 0808 208 2138 . If you prefer local advice and support then follow try Turn2Us - CLICK HERE 2. Maximise your income – check your benefits Always check what benefits you may be entitled to. You may be surprised at what is available! First, if you’re employed, check that you are receiving the statutory or enhanced sick pay you’re entitled to, and whether or not you have critical illness cover on your insurance, through work, or through a private healthcare scheme. Next, take a look at the wide range of benefits available, including ones like Universal Credit (if you are under pension age) or Pension Credit (if you are over pension age). Some benefits are means tested. This means that you might not be able to get them if your household income and savings is too high, Other benefits are based on your circumstances, such as health or mobility issues. PIP (personal independence payment) is not means tested and is designed to cover the additional costs associated with having a long-term health problem. There is an excellent site full of information from Turn2Us on all welfare benefits and grants including PIP, with a step-by-step guide to claiming - CLICK HERE Other forms of income maximisation include applying for all the grants, payments, and financial support available to you, as well as reducing your unnecessary outgoings or payments. To search for a grant or other payment based on your circumstances, use this grant search tool - CLICK HERE If you are unsure about your eligibility for these please seek advice from us. We will be more than happy to help you. 3. We’re here to help While it’s good to use the steps and tools above if you can, sometimes it can feel overwhelming, or be too complex to work through. This is where we come in. We can offer you free, confidential support with money worries as well as basic benefits information. We can then refer you to further expert help if needed. To book an appointment with our adviser please email hello@inflammatoryneuropathies.uk However please note that these appointments are limited, and offered on a first-come, first-served basis, so if your situation is urgent, or you have debts that are unmanageable, please don’t wait. Seek advice from one of the organisations listed below. Whatever your circumstances, help is always available. Sources of help and advice Below you will find a number of specialist organisations and websites that can help. Turn2Us - CLICK HERE (benefits calculator, grant search and PIP claims help) Citizens Advice - CLICK HERE (free confidential advice and information on a wide range of topics) Help Through Hardship - CLICK HERE (free, confidential advice and emergency support for people living in England and Wales.) National Debtline - CLICK HERE (free, independent support) Disability Rights UK - CLICK HERE (two Helplines that provide information on a variety of issues) Age UK Advice Line - CLICK HERE (for over 55’s and their families and carers) Coram Child Law Advice - CLICK HERE (for children’s rights re health & education) Care Needs Assessment/ Continuing Healthcare Some people with long-term complex health needs qualify for free health and social care arranged and funded by the NHS. The results of this can include funding carers, funding accessible adaptions, or, if your family is supporting you, allowing you to use the funds that would normally be spent on carers on day to day expenses. In Scotland, personal and nursing care is free for eligible individuals, but you may still need to perform a Care Needs Assessment. Learn more about these assessments via the NHS The criteria can be quite complex, so we also recommend reading more via the link below. They break down Continuing Healthcare, preparing for an assessment, and challenging an assessment in easy to read detail - it's a brilliant resource: beaconchc.co.uk It's important to note, to qualify for funding requires significant impairment and many of our community may not qualify. It can be really hard hearing a support path is closed to you when you feel you qualify. If you'd like to chat about it, please reach out to us. We may not be able to overturn a decision, but we're here to chat about what happened, and where possible, sign post you to other options.

Meet with others in the UK with Guillain-Barre/GBS, CIDP, MMN, and other Inflammatory Neuropathies. Online via Zoom, or in person support and conversation. Get Togethers Online Get Togethers Read More Local Get Togethers Read More Online Get Togethers If you want to chat about what you are experiencing with others who are going through similar or the same issues, we host online monthly get togethers. All you need is access to a computer or a phone with an internet connection and with one click you can chat, ask questions, seek support, or simply have a good old moan! These meetings are held over Zoom and are always attended and facilitated by us. You can join as often - or as little - as you want, there is no pressure and no commitment. Currently there are three separate monthly Get Togethers; one for GBS (the 3rd Thursday of each month at 2pm) one for CIDP (the 4th Thursday of each month at 2pm), and a new lunchtime session - IN between bites (the second Tuesday at 12pm). Please note, if you've been diagnosed with a variant of GBS or CIDP, you're very welcome to join us! You may not meet someone with the exact same rare variant you have (though you never know who will join us!), but you will meet people who understand the impact an inflammatory neuropathy may have on you. Just join when you feel you need the support - simply click on the Zoom links below and follow the instructions. To join our GBS chat, click here 3rd Thursday at 2pm - 16th Apr | 21st May | 18th June | 16th July | 20th Aug | 17th Sep To join our CIDP chat, click here 4th Thursday at 2pm - 23rd Apr | 28th May | 25th June | 23rd July | 27th Aug | 24th Sep To join our MMN chat, click here 2nd Tuesday at 7pm - 14th April | 12th May | 9th June | 14th July | 11th Aug | 8th Sep If you want to check the date of our next meeting then see above. Of course, if you have any ideas about expanding or changing these, we would love to hear from you. Get in touch on hello@inflammatoryneuropathies.uk or on 01529 469910 . Local Get Togethers As much as friends and family can offer support and a listening ear, sometimes it helps to talk to people who really understand. The conditions we support are rare and, chances are you have never met anyone who is in the same position as you. That's why we run local get togethers; a safe space for members, friends, families, carers and other supporters, to meet and offer each other help and advice. You can share your stories and experiences - and, importantly, know that you are not alone. Essex Our latest group met for the first time in 2025, and have their 2026 dates planned out already. Come along to Christ Church Hall, Perry Street, Billericay, CM12 0NX on the following dates between 11:00 and 12:30. 2026: May 30th Sept 5th November 28th Lancashire and Cumbria If you live in the North West of England the Lancashire and Cumbria group meets quarterly on a Saturday at 1.30pm in Catterall Village Hall , Garstang Road, Catterall, PR3 1XN . This is our longest standing group with a wealth of knowledge and experience they're ready and willing to share with new and old faces alike. 2026: June 6th September 5th December 5th Yorkshire If you're in the Yorkshire area, our group is IN transit around the area, aiming to visit as many locations in the district as possible. The last date was the 8th of November in St Mary's Parish Centre, 43 Station Road, Burley in Wharfedale, LS29 7NE . We hope you can join Jon and his touring Get Together soon! Dates for 2026 are TBC We would love to see these vital groups spread across the UK and Ireland and there are plans for more to come soon. If you would like to set up something in your area, please contact us on 01529 469910 , or email hello@inflammatoryneuropathies.uk

Inflammatory Neuropathies UK is the only charity in the UK and Ireland dedicated to supporting people with GBS (Guillain-Barré syndrome), CIDP, MMN, and over 40 other Inflammatory Neuropathies. We provide support, information, emotional counselling access, peer support, personal grants, and fund research. IN this together We are Inflammatory Neuropathies UK, the only UK charity which is completely dedicated to providing information and support to people impacted by Guillain-Barré Syndrome (GBS), CIDP, MMN, and other Inflammatory Neuropathies. That all sounds pretty complex, very scary and somewhat difficult to understand doesn’t it? It can be a lot to deal with. Not only has your world been turned upside down, but you are having to cope with a load of big words and long names you have never heard of as well. That’s why we exist. We are going to try to make everything as simple as we can for you. We will try to explain, translate, inform, and answer your questions so everything seems straightforward and clear. We can offer you personal grants, emotional support, online forums, and much more. We can support you through a community of people who have experienced the same things as you, so you can help each other. We even raise funds for research that is vital for these conditions. We work right across the UK and we can also offer advice and support to those living in the Republic of Ireland as well. We are here for you whether you have one of these conditions yourself, you are supporting a friend or a family member, you are a medical professional, or you would like to help us by raising funds. We are in this together To sign up for our newsletter, complete the form below

Returning to Work A diagnosis of an Inflammatory Neuropathy can have significant impact on your day-to-day life, and that includes your work life. These conditions aren't one size fits all. One person with a chronic condition like CIDP or MMN may require absences for ongoing treatment but require no other adjustment, another person may experience brain fog, exhaustion, or have limited ability to perform certain physical tasks. Similarly, an acute condition like GBS can leave residuals that impact manual or dexterous tasks, or even impact the ability to enter the workplace altogether. Let's look in this section at your rights, reasonable adjustments, meeting with your employer about return to work, and some other community sourced hints and tips to get your back into the work place. Your legal rights as an employee If you're living with a long term health condition like an Inflammatory Neuropathy, then you have a legal right to be protected from discrimination by both your employer, and other workers. This includes unfair dismissal or reassignment, and the right to be paid the same rate as if you did not have a health condition. Your employer must make reasonable adjustments if your health is making performing your job difficult. "Reasonable Adjustments" isn't just an expression, it's a legal term and employers must show they have taken these steps. Prospective employers also have to provide these adjustments to allow you to apply for a job. In some cases, an employer can dismiss you, but they must show they have taken all these reasonable steps to make the job accessible. Your employer also cannot tell anyone about your health condition without your consent. Your colleagues may know you've been off unwell, or that adjustments are being made for you, but it is up to you to inform them if you so choose, or allow your employer to do so on your behalf. Conversely, as an employee, there are some things you may have to do for your employer. You have to clearly express your needs, adjustments, and accommodations - reasonable adjustments can't be made if you don't ask You have to make a good-faith attempt to complete your role as fully as you can to show adjustments are needed If asked, you may need to provide a doctor's note You may need to adjust reduced hours or changing in working conditions (within reason - if it can be seen as 'punishing' you, then you don't have to accept this) You will likely have to have regular check-in meetings with your line-manager, HR, Occupational Health to check your adjustments are working for both you and the company. Reasonable Adjustments What is reasonable though? The employer must consider if the adjustment: will remove the disadvantage is practical is affordable could harm others The employer also does not have to change the basic nature of the job. Let's look at what Reasonable Adjustments may look like in the world of Inflammatory Neuropathies. Change to work environment Would a different office with less steps be better? Can disabled or reserved parking be created? Can a fridge for medication be put in place just for you? Can a ramp be added? Can lights above your desk be dimmed? Change to work equipment Can a screen reader or hearing loop be implemented? Depending on your needs - can a standing desk, or wheelchair accessible desk be purchased? Can large print documents be available? Can bigger handles, or hand controls, be adjusted on vehicles/equipment? Change to working arrangement If the role is mainly IT or phone based, can the employee work part or full time from home? Can adjustments be made to account for absence, including paid time off for treatment (you cannot make an employee do extra work to make up for absences). Can a phased return to work be introduced? Change to the role/tasks Can work be distributed differently in the team? Can another suitable role be found within the team? Can the current way of working look different? Can a job share be introduced for certain elements of the role? Remember, Reasonable Adjustments are different for every type of job, it's important to think what your employer could do differently before setting up a meeting with them. Speaking of which, that's the next step! Set up a meeting with your employer You've had your diagnosis, you know (roughly) what your treatment schedule is like if you're receiving treatment, and you have a good idea of your current abilities. You now want to return to your job if you've been given time off, or you'd like to apply for a new one. First things first, it's time to schedule a meeting or interview. Talk to your current, or future, line manager/boss/employer to arrange a formal sit down to discuss your needs. Know what you want to achieve Now you have a date, it's time to think what you want to talk about. Bringing an agenda of points mean you wont miss anything if you get a little flustered on the day. So sit down, and consider what it is you want from the meeting. These are largely your reasonable adjustments: Adjustments to your work area - for example, you may wish to move to a ground floor office, talk about the installation of a ramp, look at how equipment can be adapted for use Permission for absences for treatment - if you're on a set schedule for IVIg, you may wish to bring that schedule or a note from a GP/Neurologist explaining the need for absence A return, or start, on reduced hours - you might find starting or returning to a 9-5 immediately, isn't possible, so you could discuss phased hours until you feel comfortable going full time (if that is your goal - you may also want to discuss a possible job share) Reassignment - if you know your condition makes it impossible for you to return to your current role, would you be willing to retrain or work elsewhere in the organisations using the skillset you've developed? An employer does not have to grant this or create a role if it is not available. A little understanding - you may just want to let your employer know what you've been through, and are going through, and for them to quietly have a word with your colleagues. Even if you're not having a big formal meeting, you're well within your rights to say, "I just don't want a big fuss". What to take Relevant medical documents (copies) - if you have a note from your GP or neurologist, appointment letters, occupational health assessments, and more, it can be worth bringing along copies in a folder. You may not need them but it can be useful to have them to hand. Support - If you're part of a union, you may wish to bringing along a representative to support you. They can take notes, give advice, or just be moral support. You may also, in some cases, be able to bring in a trusted colleague - though do enquire first. A positive attitude - yes, it's a little cliched to say, but please try not to be nervous about this meeting. Most (and we know not all) employers are understanding and happy to support a good employee like you. Having all of the above just makes sure everything is done by the book and protects both you and the organisation. In the meeting Refer to your agenda - it can be easy to get side-tracked. Don't be afraid to bring the conversation back to the topic at hand. Remember your rights - Reasonable Adjustments must be made, or all reasonable steps towards an adjustment must be made. Take notes to refer back to, and if possible, record the meeting - the employer is not obligated to allow this though Get any decisions and reasonable adjustments in writing - Your employer may send you these after the meeting in a formal email/letter. Set a timescale - when will the adjustments be made, if you're planning to return on a staggered basis, what does this look like? When will you meet again? Post-Meeting Make sure you receive confirmation - if you were to get any decisions in writing, make sure these are delivered. Speak to a trusted colleague - talk to a friend at work to check your understanding of the conversation Useful links for your and your employer You can reach out to Inflammatory Neuropathies UK to discuss the impact these conditions can have. For specialist support look to: Acas Citizens Advice: England , Scotland , Wales , N. Ireland Equality Act 2010 SCOPE The Health and Safety Executive (HSE) Trade Union Information

IN touch How we can help If you, or someone close to you, has been diagnosed with Guillain-Barré Syndrome (GBS), CIDP or any other Inflammatory Neuropathy, you are not alone. We are here to support. Even if the diagnosis is as yet not confirmed, we are sure you must have a million questions. Every illness we face is hard enough, but these particular ones are rare and that lack of familiarity brings with its own set of hurdles as well as concerns and fears. We understand that these conditions can be life changing, both in the short term and the long term, so we will use all of our resources to try and relieve as much of the pressure as possible. How can we help? Firstly, if you want to do a deep dive and check out facts etc, then our information hub and blogs are a great place to start. Information Hub From there, if you would like, we can connect you with our volunteer team who all have personal experience of these conditions, either first hand or through those close to them and who really want to support you however they are able. Access Peer Support Next, there is the opportunity to meet others in the same or similar situations to you through online group chats where you can be of mutual support to each other. Join us Online or In Person We can even give you information about getting a personal grant if you are going through financial hardship as a result of your condition. Financial Advice We also would love you to get involved helping us raise awareness - there are so many ways you can contribute your time, your skills and your experiences, however broad or limited any of these may be. We appreciate it all - and need it all. Get Involved If what you find here doesn’t answer all your questions, or if you just want to talk to someone, then contact us however you prefer; Call 01529 469910 or 0800 374 803 Email hello@inflammatoryneuropathies.uk Message or WhatsApp us on 07878 090 965 DM us on our socials @inflamneurouk Online & Local Get Togethers Peer Support Finances: Personal Grants & Benefits Health: Emotional Health, Physio & Diet

Terms & Conditions The following Terms and Conditions and Privacy Statement apply to your use of the Inflammatory Neuropathies UK website. Inflammatory Neuropathies UK maintains this website as a convenience to its members and supporters. By using websites owned and operated by Inflammatory Neuropathies UK, you are agreeing to comply with and be bound by the following terms of use that may change at any time. Intellectual Property Rights This website is owned and operated by Inflammatory Neuropathies UK. The rights in the designs, the pictures, photographs and content of this website are owned by, or licensed by, Inflammatory Neuropathies UK and are protected by intellectual property rights. You are permitted to print or download content for your own personal use only. You must not use any material on this website for any commercial purpose or on any other website, unless prior written permission has been sought. Copyright All material on this website is copyright of Inflammatory Neuropathies UK, except where otherwise expressly stated. Accuracy of Information Though much of the material on this site has been written by neurologists and other health professionals, Inflammatory Neuropathies UK is a registered charity and not a medically qualified organisation. The information on these pages is for general educational purposes only and should not be regarded as advice on the diagnosis or treatment of either the Guillain-Barré syndrome or any other medical condition. Whilst every effort has been made to ensure the accuracy of the information provided, Inflammatory Neuropathies UK can neither be held responsible for such information nor be held responsible for information on linked sites. The information provided on this site is designed to support, not replace, the relationship that exists between a patient/site visitor and his/her existing doctor. Confidentiality of data relating to individual patients and visitors, including their identity, is respected. Inflammatory Neuropathies UK may change or update this website or links to other websites at any time. Governing Law The terms and your use of this website are governed by and construed in accordance with the laws of England and any disputes will be decided only by the Courts of England. Disclaimer Inflammatory Neuropathies UK offer's weblinks to other websites for your convenience. In using one of these weblinks it is considered that you are leaving the Inflammatory Neuropathies UK website, therefore it does not offer any guarantees, endorsements or accept any responsibility for any such websites. Privacy Inflammatory Neuropathies UK is committed to safeguarding your privacy online. This policy only covers this website. Weblinks from this website to other websites are not covered by this policy; users should check the Terms and Conditions of any other website they visit. You can access and browse our website without disclosing your personal data. However, our comments do enable our visitors to communicate with other visitors or to post information to be accessed by others. Inflammatory Neuropathies UK collects the following information regarding visitors to our website via Wix and Google Analytics: IP addresses, information regarding what pages are accessed and when. We use your IP address to help us to track usage behaviour and compile aggregate data that will allow content and navigation improvement of our website. We cannot identify you from this information. Our website uses email forms for visitors to request information on the condition, to register as friends or members or to make donations. We collect visitors’ contact information (i.e. email and postal address) and unique identifiers (i.e. date of birth). Contact information from the email form is used to send information to our visitors as specifically requested by them. Unique identifiers (such as Customer Reference Numbers) are generated to verify the user’s identity in our record system. Visitors’ contact information and unique identities will not be shared with third parties. Inflammatory Neuropathies UK places great importance on the security of all personally identifiable information associated with our visitors. We have security measures in place to protect against the loss, misuse and alteration of personal data under our control. We have organisational and technical security measures in place to safeguard your personal information, and we are registered data controllers under the Data Protection Act 2018/GDPR. Our Information Inflammatory Neuropathies UK Registered Charity No: 1154843 and SC039900 Registered office: Glennys Sanders House, Pride Parkway, Sleaford, Lincolnshire, NG34 8GL Contacting the Website If you have any questions about this privacy statement or the practices of this website, you should contact the Website Administrator at hello@inflammatoryneuropathies.uk . You have a legal right to a copy of all the personal information about you held by the charity. You also have a right to correct any errors in that information. Consent You agree to use our website only for lawful purposes. You agree that you will not bring or use on our website any viruses or any other computer programming routine which damage, interfere with, surreptitiously intercept or expropriate any system, data or personal information. By agreeing to these Terms and Conditions you agree that all information provided by you is complete, accurate and honest and that you will at all times use the website with common sense and care. Inflammatory Neuropathies UK reserves the right to change these Terms and Conditions from time to time. By continuing to use this website it is implied that you accept the Terms and Conditions and Privacy Statement set out above. Data Protection The information provided will be held by Inflammatory Neuropathies UK for processing and administrative purposes in accordance with the Data Protection Act 2018/GDPR. We would like to keep you informed about our work and charity appeals and events. If at any time you prefer not to receive this please contact us on 01529 469910 or email: hello@inflammatoryneuropathies.uk