Research At Inflammatory Neuropathies UK, we are committed to advancing the understanding and treatment of conditions such as Guillain-Barré Syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), Multifocal Motor Neuropathy (MMN), and related Inflammatory Neuropathies. As part of this mission, we commission research via grants and support for individuals and institutions exploring new medications, treatments, or practical approaches that can improve the lives of those affected by these conditions. If you are a student, researcher or healthcare professional with a project proposal, we’d love to hear from you. Please contact us at hello@inflammatoryneuropathies.uk to discuss your ideas. We hope to bring you information about our current commissioned research shortly, and you can also explore some of our previously funded research projects here. Patients' Experiences Falls Post GBS Qualitative Interview Study If you're interested in taking part in clinical trials, visit: CIDP - US Gov CIDP - European Trials Register GBS - US Gov GBS - European Trials Register

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Medically sourced information on Multifocal Motor Neuropathy (MMN) MMN Welcome to our Multifocal Motor Neuropathy (MMN) Information Hub If you're here because you've been recently diagnosed - welcome. We know this is a scary and confusing time for you and your loved ones. Being diagnosed with any chronic condition is hard, but something so rare makes it that little bit tougher. Please know you're in the right place. On this page we'll breakdown what is happening to you, or a loved one, and hopefully make this time a little less confusing. Our information is sourced from our Medical Advisory Board, medical texts, and recognised support providers. This means that some of the text can be a bit complicated or "high level". Where possible, we've taken steps to make this page as accessible to everyone as possible. 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. If you feel you need support with the emotional impact of this, please visit our Emotional Support section. We have a specialist rare condition support service available. What is Multifocal Motor Neuropathy (MMN) We discuss the basics of MMN Read More What causes MMN? What triggered your MMN? Read More How is MMN diagnosed? What tests can you expect your consultant to carry out? Read More How is MMN treated? Now you've received an MMN diagnosis, how will you be treated? Read More MMN - Advice for Carers Entering a new role as carer for a family member can be daunting. We cover some pratical suggestions, and have some useful carer support links and resources for you to access. Read More Mental Health, Well Being, and Work following MMN Diagnosis Contains information on how to care for your mental health whether you’re living with MMN or a loved one had a diagnosis. We discuss sexual relationships, before a section on returning to work – how to approach and talk to your employer after an absence. Read More What happens next? We cover support and rehab, prognosis, physio, and pain management, hygiene, and finances Read More Anchor 1 What is Multifocal Motor Neuropathy (MMN) "Multifocal Motor Neuropathy, or MMN is a rare disorder in which focal areas of multiple motor nerves are attacked by one’s own immune system." Or in easier terms, MMN is a rare condition in which specific groups of your motor nerves (the ones that control movement), are accidentally attacked by your immune system. It's Rare MMN is very rare. There are estimated to be just 0.6 cases in every 100,000 people which makes it even rarer that GBS - one of the other rare conditions we support here at Inflammatory Neuropathies UK. It's asymmetrical Typically, MMN is slowly progressive, resulting in asymmetrical weakness of a patient’s limbs (meaning it affects the right and left sides of the body differently). It causes weakness Patients frequently develop weakness in their hand(s). This can lead to dropping items like cutlery, finding shirts hard or impossible to button, making locking or unlocking a door difficult, and even limiting the ability to give a simple thumbs up. It shouldn't cause pain The weakness associated with MMN can be recognised as fitting a specific nerve territory. There is essentially no numbness, tingling, or pain, as you may find in some other Inflammatory Neuropathies. If you have been diagnosed with MMN and do feel any numbness, tingling like pins-and-needles, or pain that you cannot explain (such as you've bashed your arm, or you've sat funny and your leg has fallen asleep), please talk to your Neurologist, Consultant, or GP. It can cause twitches Patients with MMN can have other symptoms, including twitching or fasciculations. Fasciculations are basically small muscle spasms or twitches visible under your skin, caused by your motor nerves firing involuntarily. They shouldn't cause pain like a cramp, but may be irritating or distracting when you're at rest. It doesn't go away The clinical course of MMN is chronically progressive without remission. This means that without treatment, the symptoms and affects will not improve, reduce, or disappear. However, treatment such as IVIg does limit progression, improves function, and allows people to carry out day to day activities. It's not fatal MMN is chronic, which means you will have the condition for life, but it will not shorten your life expectancy. It mainly impacts muscle strength and does not progress to vital organs or impact breathing. While not fatal, without treatment, it can lead to permanent weakness so it is important to maintain your care. It can be mistaken for CIDP During diagnosis, you may have heard CIDP mentioned. This is another Inflammatory Neuropathy (you can learn more here ). MMN has many features similar to CIDP in that its onset is progressive over time, causing increased disability that reflects the greater number of nerve sites involved. However, unlike CIDP, MMN is asymmetric. This may be one of the key clues that tipped your Neurologist or health care team off about your condition. What Causes MMN We know it's frustrating to read - but the simplest answer is we don't know . Experts are yet to discover the exact cause of MMN. They know you're not born with it. They know it's an autoimmune condition. In a similar condition like CIDP, or even GBS, we know that the autoimmune reaction is triggered by an infection or illness. Food poisoning is a good example of this. Undercooked chicken can contain the bacteria Campylobacter jejuni. When consumed, someone becomes ill with food poisoning, the illness triggers an immune response, and in the case of GBS - the response is to accidentally attack the nerves. In MMN, this is not thought to be the case. So what do we know? "MMN is associated with increased levels of specific antibodies to GM1 , a ganglioside or sugar-containing lipid found in peripheral nerves . Antibodies normally protect individuals from viruses and bacteria, but may under certain circumstances bind to and facilitate an immune attack on the peripheral nerve. These antibodies have been detected with newer assays in almost all of MMN patients. Even if these antibodies do not cause the nerve damage, they may be an important marker for disease and facilitate diagnosis." Let's break that down. Antibodies : Proteins made by the immune system that normally help fight infections GM1: A ganglioside - A naturally occurring fat-and-sugar molecule found on the surface of nerve cells that helps nerves function and communicate properly Immune Attack : When the bodies defence system mistakenly treats its own nerves and tissues as a threat and damages them Peripheral Nerve : The nerves outside of the brain and spine (the Central Nervous System). They carry messages that control movement and touch. Assays : A lab test used to detect substances in the blood like antibodies Marker : A sign that helps identify or confirm a condition, even if it's not the direct cause In simpler terms then: MMN is linked to higher levels of certain antibodies in the blood. These antibodies mistakenly recognise GM1, a molecule that helps nerve function and communication, as a threat. The antibodies then attach to the GM1 coated nerves and trigger an immune response that damages and interferes with how the nerves work. In recent testing, these antibodies can now be detected in most people with MMN. Even if they're not a direct cause, they're an important clue for doctors and can help confirm a diagnosis. So while we don't know what is the overall cause, we do have some clues. And with thanks to kind donors that support our work, we can invest in research into that cause to help the global push for understanding. How is MMN diagnosed? If you've been diagnosed, you'll have likely been through the following. However, if you or your medical team only suspect MMN may be present - here is what you can expect. A clinical diagnosis of MMN depends on demonstrating the following: The patient has a purely motor disorder affecting individual nerves They need to show that you have a nerve condition that only affects muscle movement and strength, but does not impact sensation or feeling. It should involve individual nerves/locations rather than the whole body or significant portions of the body. The patient shows no UMN (upper motor neuron) signs such as brisk reflexes at the knees or ankles or spasticity in the limbs So your knee or ankle reflexes shouldn't be overly or unusually active, and your limbs as a whole should not be unusually stiff or tight. The patient has no difficulty speaking or swallowing You shouldn't struggle to speak, and those around you haven't noticed a change in your pitch, volume, or tone. You should be able to eat, and drink, as normal. The patient demonstrates no sensory deficits While you may feel weakness, you should not feel any difference in sensation. You can feel hot and cold, if someone touches, pokes, or tickles the impacted area you can feel sensation, pain, or an itch. You should not usually feel numb or a pins-and-needles sensation. Shows evidence of focal areas of nerve in which electrical impulses are slowed or blocked (conduction block) which can be detected on electrophysiology tests You'll have specialist electrical nerve tests that show that, in certain spots, nerve signals are slowed or stopped altogether. Common Misdiagnoses These criteria are designed to differentiate MMN from other conditions. Chiefly: ALS, (Lou Gehrig’s disease) Lewis-Sumner Syndrome (a multifocal inflammatory nerve disease with motor and sensory symptoms) and vasculitis or inflammation of small blood vessels in the peripheral nerve. In the early stages of investigation, CIDP is sometimes mentioned. We've also heard of people being told, "you're just getting older" when discussing weakness. Remember, if you think something is wrong and you don't agree - you can always ask for a second opinion. What tests will be carried out to do this? Along with patient history and a physical examination, a neurologist is usually needed to determine the diagnosis via specialist tests including (but not limited to): An electrodiagnostic study, which includes nerve conduction studies (NCS) and needle electromyography (EMG). Laboratory testing for IgM GM1 antibodies is also frequently done. How is MMN treated? While there is no current cure for MMN, there are treatments to help improve independence, and reduce/reverse symptoms. The most medically significant and impactful of these treatments is called IVIg (or intravenous immunoglobulin). What is IVIg? IVIg stands for intravenous immunoglobulin. It’s a treatment made from donated human blood plasma that contains healthy antibodies. These antibodies help calm down an immune system that’s behaving abnormally, which is why IVIg is so popular across the conditions we support. It's ability to calm, or reduce, inflammation can save the lives of our GBS community, and give our chronic condition community back their movement, strength, and independence. In 2025, UK plasma was finally cleared for use in IVIg. This means it's more important than ever for as many people to donate blood and plasma as possible. Plasma can be given directly at specialist centres. However, it's also taken as part of your standard blood donation. Around 50% of each blood donation is plasma, so by donating blood - you're creating this life changing IVIg. How is it given? You'll visit a hospital or clinic close to you that can administer IVIg. You'll sit on a chair or a raised bed and a drip will be inserted into your arm. Over a course of several hours, the IVIg will be infused into your bloodstream. Depending on your dose, this can be one session, or may take a day or two. Your Doctors and Nurses will discuss that with you. Most people can sit fairly comfortably during the session, you shouldn't feel pain or discomfort. So do bring something to entertain you - a book, your phone or laptop, a pair of headphones, or a friend to chat to. Your medical team will keep an eye on you throughout, so you may even be allowed to doze off for a while if you prefer. It's worth taking a trip to the toilet first, usually the machine can be paused or you may have a drip on wheels - but it just makes life a little easier for everyone. What will it do and how often? Picture a child's drawing of the sea, there's waves that go up and down sharply. MMN, like CIDP and many other Inflammatory Neuropathies, has its symptoms come in 'dips' - the bottom of the wave: minimal symptoms, and 'spikes' - the top of the wave: symptoms worsening. The first time you receive treatment, you'll likely be in a spike phase. Once you receive your IVIg, you can expect to feel a degree of improved motor function. Some may only experience slight improvement, others may feel a significant improvement across strength, grip, and movement. In some rare cases you may even feel like you have no symptoms at all. You'll now be in a dip phase. You're feeling stronger. You're feeling less MMN symptoms. Did you know: following his IVIg, New Zealand based Clive Phillips was able to cycle 3,200km around France to raise awareness of MMN? Learn more here Slowly, perhaps over 2-5 weeks (everyone is a little different), you'll start to feel weaker as the MMN symptoms return. You're now beginning to come out of a dip and into a spike. At this stage you'll be given treatment again. Treatment given shortly after symptoms begin to appear is always more effective than letting symptoms set in fully. Your care team will work out the pattern/frequency of treatment that is right for you. This may change over the years and months ahead as they fine tune it to give you the best quality of life possible. What other treatments are there? IVIg is not a cure for MMN but currently no other therapy has proven to be widely effective. In a limited number of patients a cancer chemotherapy drug is temporarily effective. However, its use is limited by the toxic side-effects and risks that accrue with chronic use. Other immunosuppressive treatments such as corticosteroids and plasma exchange are ineffective and can actually make the condition worse. Many investigators around the world are working towards a better understanding of MMN, we hope any research we fund can help this journey. MMN Advice for Carers Diagnosis of a rare and chronic condition can bring mixed emotions. On one hand, it's quite normal to feel relieved to have an answer, especially when you find out the condition is not fatal or life-threatening. On the other, learning someone important to you has a life-long illness can be daunting. Especially if you will be acting in the role of carer.* On this page we have some practical suggestions 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”. This means, even if your loved one only needs a hand during a spike of their symptoms, or a lift to hospital for IVIg, you're acting in a care capacity. These options may not be applicable to your or your loved one, but it's useful to know that help is available. 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 risk of falls due to poor balance, and dropping or spilling things due to weakness. Diet and exercise MMN should not overly impact diet, however, some find increasing protein intake helpful to help maintain muscle mass. 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. 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 Mental Health, Well-Being, and Work following MMN diagnosis This section will provide useful links and sources to help support your mental health during MMN. 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 Mental Health & Wellbeing With all the changes in your health it is not uncommon to feel anxious or angry, and this can even be helpful to a degree in providing the mental and physical energy that is needed to anticipate and tackle problems. 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 MMN 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. We may be able to provide access to counselling - please click here for more Some other sources of support are shown below. 5 steps to mental wellbeing Mindfulness Post-Traumatic Stress Disorder Mental health and wellbeing MIND Young Minds Sexual Relationships MMN and other chronic 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. As well as coming to terms with a 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 MMN - what happens next? MMN - So what happens next? What happens next? That’s a big question for a lot of people after diagnosis and/or 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 Financial Help General Prognosis Pregnancy Physiotherapy Hygiene, Cleanliness and Teeth Diet Your Immune System Exercise and Rest Pain Support and Rehabilitation If you do need time in hospital, you may require some form of rehabilitation before returning home, to help you regain strength, dexterity and mobility. This could be within a rehabilitation unit in the hospital, or you may be transferred to a specialist rehab unit elsewhere. You may also be offered psychological support, as a potentially life-changing illness such as MMN or another chronic inflammatory neuropathy can also severely impact your mental wellbeing. 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: While not common for MMN, if you experienced any communication and swallowing problems, the therapist can help you with that. Counsellor or Psychologist: someone you can discuss your problems with and help you find ways to cope emotionally Financial Help Financial concerns may be causing anxiety, especially if you are the main wage-earner and unable to work. If you are employed, stay in regular contact with employers and make sure you understand the absence and returning to work processes. Inflammatory Neuropathies UK may be able to help with the cost of frequent journeys to visit a family member in hospital. Get in touch and ask about our Personal Grants Scheme . Once you leave hospital, or if you are already receiving treatment as an outpatient, you could be entitled to benefits to help you support yourself and your family. The benefits system is complex and subject to change, but Citizens Advice has up-to-date information on their website, and they can even help you make an application for benefits such as Personal Independence Payment (PIP) or Universal Credit: www.citizensadvice.org.uk Further information on benefits can be found at: www.gov.uk/browse/benefits If adaptations to your home are needed, such as installing a ramp or downstairs bathroom for example, it is worth contacting your local council to see if you are entitled to help via a Disabled Facilities Grant: England and Wales Scotland Northern Ireland Republic of Ireland If you are on a low income, or someone in your household is severely and permanently disabled, you may be entitled to a reduction in Council Tax. Further information is available an Carers UK. General Prognosis IVIg treatment of MMN is usually very effective with about 80%-90% of patients responding positively (though this can vary from partial to substantial improvement). Unlike CIDP, MMN almost never goes into remission and instead ongoing IVIg is usually needed to maintain function. Your health care provider will discuss appointments with you. Delay in diagnosis or the wrong treatment can lead to permanent weakness. However, with proper treatment, and as progression is slow, many patients can maintain a stable functional status for years. Pregnancy Neither IVIg nor plasma exchange is contraindicated during pregnancy. However, as plasma exchange requires additional considerations and monitoring, IVIg might be preferred. Physiotherapy 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 Neuropathies 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 : Your Immune System Although caused by your immune system malfunctioning, MMN does not weaken or damage your immune system, and having MMN does not mean that your immune system is compromised, unless you are being treated with steroids. 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, your doctor (rather than Google!) will be able to advise you on anything that may help you during recovery. Exercise and Rest Physiotherapy, occupational therapy (OT) and speech and language therapy play a vital role in maximizing functional ability. 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. 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 Being in pain naturally impacts on mood and the ability to cope with everyday situations. MMN should not cause pain itself, but can lead to accident or injury via falls or drops. If you are experiencing pain, 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 Financial Help General Prognosis Pregnancy Physio Hygiene Diet Immune Exercise Pain

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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.co.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

Inflammatory Neuropathies UK's Annual Accounts and Review for 2024-2025. Annual Accounts For our Annual Accounts, please click the following headers. 2024-2025 2023-2024 2022-2023 2021-2022 2020-2021 Our Annual Accounts for 2024-2025 were agreed at the 2025 AGM. The minutes of which can be found at Annual Accounts 2024-2025 Important note on names: Reading our accounts and wondering, "who or what is GAIN? I thought this was Inflammatory Neuropathies UK"? Until May 2025, Inflammatory Neuropathies UK operated under GAIN (Guillain-Barré & Associated Inflammatory Neuropathies). In order to be more inclusive to all the conditions we support, we underwent a rebranding exercise and changed our name, logo, website, and outlook, however our charity number and overall mission remains the same. If you'd like to learn more about the rebrand, click here .

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. ! Widget Didn’t Load Check your internet and refresh this page. If that doesn’t work, contact us. 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

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

Fundraise You may think there is little, or even nothing, you can do to help charities like us who are struggling with the impact that COVID left. So many events had to be cancelled - and as a result so much potential income was lost. We are feeling that pinch even years later. But, actually, you can make a world of difference. At home From Bake Sales to Ladies Days to Hill Climbs. Read More At work Payroll Giving, Give As You Earn, Volunteering & Tins. Read More Donate Fundraising or donating? Here's how to support us: Read More Gift Aid Make your donation worth 25% more, at no extra cost to you! Read More Fundraise: At home Yes, fundraising can be challenging, but it’s also highly rewarding - not to mention, a whole lot of fun. Whilst you are invaluably helping us, you will also be meeting like minded people and, by picking an activity you love, you will enjoy yourself at the same time. From bake sales to bingo nights, marathons to mountain climbing, there is no limit to where your imagination can take you. Of course, it's easier to stay committed when you are enjoying what you do - and passion is infectious so you are more likely to attract others on board to help you and us. You might not realise it, but every time you tell people what you’re up to and why, you’re also acting as an ambassador for us, raising awareness of the charity and the conditions it supports. Whether you want to take part in an event or run one yourself, we would love to hear from you and chat through your ideas so we can work together to achieve our goals. Call 01529 469910 (Mon-Fri 9am-3pm) email hello@inflammatoryneuropathies.uk Text Giving Once your campaign idea is agreed on and up and running, we can set you up with your own Text Giving campaign code, so your supporters can donate quickly and easily using their phone. As well as sharing the code across social media and amongst friends and family, you could even have posters and flyers printed to spread the word around your local community. Online donations We can supply you with a sponsorship form and collection box should you choose but, now, most people prefer to use an online platform to collect donations - it’s so much easier. JustGiving is a popular and easy-to-use online fundraising platform, for which we pay a monthly fee plus a (small) percentage of each donation and Gift Aid. In return, JustGiving manage payments, and even collect Gift Aid on our behalf. You can use the link below to start fundraising with your very own JustGiving page, and once you’re set up, you can share it with friends and family via social media. Don’t forget to add in a few words about what you’re doing and why, and post an occasional update to let everyone know how you’re getting on. Please set the expiry date on your fundraising page to within a couple of weeks of the date your event or campaign ends, as we only get notified that we need to contact our fundraisers with the total raised once a page is closed. Visit JustGiving and start fundraising Did you know that you can raise 65% more by telling your story on JustGiving, 17% more by sharing a fundraising goal, 23% more through pictures, and 8% more just by updating? Learn more here You can also raise funds: In memory of a loved one By leaving a gift in your will By playing our lottery or by signing up to the 200 Club Fundraise: At work Do you own a company or business and would like to get involved with a charity? Are you an employee and want to suggest some ideas of charitable work to upper management? Then read on! Payroll Giving Payroll Giving (also known as Give As You Earn) is one of the quickest, easiest and most flexible ways of donating to our charity. The scheme enables employees to make a donation straight from their gross salary tax-free. This means if an employee who pays standard rate tax donates £1 each month, the cost to them is only 78p on the basic tax rate or 60p on the higher tax rate. Payroll or HR departments will be able to provide details if they are running this scheme. There are many benefits: Not only is Payroll Giving a clear benefit for employees, there are many benefits to be found as an employer too. ● A Payroll Giving scheme is very easy to set up. ● Will fit in with your Corporate Social Responsibility policy. ● Can help to increase staff motivation and morale. ● Can boost your image as an employer. Matched giving Many companies will help charities through a matched giving scheme. Some will match pound for pound, and others will even double match donations made to registered charities by its employees. If you are making a gift to Inflammatory Neuropathies UK, please check with your Payroll or HR department whether your company operates a scheme like this as it could make your donation worth even more to us. Gifts in Kind If your company would like to support our work , but is unable to contribute financially, there are plenty of other ways to help. For example, we are always looking for raffle prizes for our events, so if you feel your company could help in this way, we would love to hear from you. We are also keen to extend our volunteering services and there may be ways in which your company can help us with this. Talk to us about this by contacting hello@inflammatoryneuropathies.uk or give us a call on 01529 469912 Collection Boxes Did you know that, as a country, we have £345 million in loose change in our homes, down the back of our sofas and in our cars? Why don’t we put that useless change into good use? Static collecting boxes are amongst the most effective and efficient forms of fundraising and also raise awareness (we can now claim Gift Aid on the contents of all collection boxes up to £5000). Can your business find a home for one of our collecting boxes? If so, please get in touch with hello@inflammatoryneuropathies.uk . How to donate Have you completed your fundraising and are ready to donate the funds? Or perhaps you’re simply looking to make a donation to support our work? Thank you! Your support means everything to us. Your generosity helps us fund vital research, provide emotional support counselling, and support our local groups doing important work in communities across the country. You can support us via: Enthuse Our trusted third party partner at https://inflammatoryneuropathies.enthuse.com/cp/4fcea/fundraiser#!/ Directly via our bank CAF Bank Inflammatory Neuropathies UK Sort code - 405240 Account no. - 00024633 Paying in by post Please make cheques payable to Inflammatory Neuropathies UK and send to: Inflammatory Neuropathies UK Glennys Sanders House Pride Parkway Sleaford Lincolnshire NG34 8GL Making an electronic bank transfer JustGiving or similar If you have created your own fundraising page through JustGiving or another online fundraising platform and linked it to Inflammatory Neuropathies UK, donations are automatically forwarded to us. Gift Aid The Government operates a scheme called Gift Aid that allows charities to claim 25p on every pound donated. So if you donated £100 to Inflammatory Neuropathies UK, it means that you’ll actually be giving us £125 at no extra cost to you. You can make your income go even further! Whether you’re hosting an online fundraiser via JustGiving or Enthuse, or you’re using a paper sponsorship form, consider asking your supporters to “tick the box” for Gift Aid. Gift Aid is a UK government scheme that allows charities like us to claim an extra 25p on every £1 donated by UK taxpayers, at no extra cost to you. So if someone donated £100 to you, we could get £125 for our work. That bonus £25 could allow us to fund an additional Peer Support session, or put it towards the cost of an online Get Together. If you're fundraising for an event and have a JustGiving or Enthuse page, then don't worry, those platforms will automatically ask your donors to “Gift Aid It” by presenting them with a check box. If you're using one of our paper sponsor forms, there will be an option to "tick the box", please encourage your donors to tick it - making sure they read the small print first! If you're making a one off or regular donation, please consider Gift Aiding the donation. Again, platforms like Enthuse will automatically ask you - but if you're making a donation via bank transfer, or cheque for example, we may send out a reminder periodically asking if you'd like to Gift Aid past donations. You can also print off, fill, and mail in a paper copy of our Gift Aid form. You can also complete the short form below. Please note - you cannot Gift Aid payments where you receive something in return such as tickets, raffles, entry fees, bake sale goods - these are considered a purchase rather than a donation.

Learn how to set up a good fundraising page to help support Inflammatory Neuropathies UK. IN simple steps So you've decided you want to raise money to help Inflammatory Neuropathies UK support others. First, let us take a moment to say thank you . When we say we couldn't do it without you - it's not a throwaway comment, it's a statement of absolute fact. We could not do what we do without your help. With that in mind, we want to help you maximise your fundraising abilities, and the first part of that is setting up an excellent fundraising page. Let us guide you through a few simple steps to success. If, at any point, you think you could do with a little help in writing your story or getting better pictures - reach out to us. We're more than happy to help. It's the least we can do! hello@inflammatoryneuropathies.uk JustGiving 1. Visit JustGiving You can find us right here: justgiving.com/gbs Once you're on the page, look for a blue button called "Fundraise For Us", it should be at the top of the page. Click it! 2. Are you fundraising in memory of someone? If you're doing this in memory of someone special, hit "yes". You'll be prompted to share their name here. If you're not, hit "no". Then, in both cases.. Hit next. 3. Are you taking part in an activity? Take a moment and think about what you're doing. If you're taking on an established event like the London Marathon or Kiltwalk , click "I'm taking part in an event" and hit next. You'll then be able to search for event. If your event is there, click it and hit "Next", if it's not there, click "Create your own activity". If you're organising your own activity , or can't find yours on the established list, hit "I'm doing my own activity" and click next. You'll be asked to enter the type of activity (run, walk for example), then a name for the activity (Bake Sale for Inflammatory Neuropathies UK for example). You can also put in a date here if relevant. If you're not running an event , but would like to fundraise for a birthday, wedding or similar, click "Just Fundraising" and enter the details requested. Hit next. 4. What's your target? How much would you like to raise? You can change your target at any point, but having a goal helps encourage your supporters to donate. In fact, it increases donations by 17%. Hit next. 5. Personalise Your Page Writing your story can help raise 65% more ! It's a space to explain why you're doing what you're doing. If you had or have one of the conditions we support, perhaps discuss diagnosis or how it impacts you, and how in turn that impacts the challenge. If you're doing it in memory of someone special, tell us a little about them, we'd love to hear about who they were and what they meant to you. Hit next. 6. Page Cover A picture tells 1000 words, it also helps raise 23% more. Your photo is the first thing they will see on your page, and will be what people see when you share your story on social media. JustGiving recommend the more the merrier, something bold, and standout. Hit next. 7. Finalise Take a moment to read over the summary and make sure you've said everything you want to say. Let us know if we can keep in touch and then... Launch! You're all done... well nearly. 8. Share it You're doing something amazing, so don't be shy - share it with the world. Post on socials, encourage people who donate to share the link, and, if possible, share it via email or work noticeboards. 9. Local Press Local press love a good fundraising story, reach out to them to tell them what you're up to and why. They may just come out for a picture and you can share your page with your whole area! 10. Keep updating Pages that see updates - be it fitness tracker screenshots or progress check ins - often earn up to 8% more. Check in on JustGiving, treat it like a diary or another social media channel and let the world know what you're up to and how you're getting on.