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

IN contact Our details UPDATE: WEDNESDAY 25th FEBRUARY 2026: Due to work around the office - communications may be disrupted today. Normal service should be restored by mid-afternoon and we will be back to full capacity tomorrow, Thursday 26th February. Thank you for your patience - please do leave a message if you cannot get hold of us today. Telephone (9am to 4pm Monday to Friday): Office 01529 469910 Freephone helpline* (9am to 4pm Monday to Friday): 0800 374803 UK 1800 806152 ROI Email: hello@inflammatoryneuropathies.uk Address: Inflammatory Neuropathies UK Glennys Sanders House Pride Parkway Sleaford, Lincolnshire NG34 8GL As a listening organisation, we love hearing from people. Please feel free to reach out to us at any time whether it's about a particular service, question about conditions, or you just need to chat to someone who understands. If we can't take your call, please leave a message and we'll get back to you asap. *Please note, we cannot offer medical advice so if you require medical guidance, please contact your GP or other healthcare professional. Your details Your question or comment First name Last name Phone Email Multi-line address Country/Region Address City Zip / Postal code How do you want to get involved? Choose as many as you like Peer Support (Talking to other people about your experience) Local Get Together Coordinator (Facilitating a local group) Local Champion (Talking to local clinicians, and people impacted by conditions) Online Champion (Supporting people impacted on online forums and meetings) Raising Awareness Research Support Other Contact consent We would like to use your contact details to communicate with you with news and information about Guillain Barré & Associated Inflammatory Neuropathies and ways to support us. Please choose how you would like us to contact you. Email Phone Post SMS Text Help fight spam - what day of the week follows Monday?* Monday Tuesday Wednesday Thursday Friday

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Medically sourced information on Guillain-Barré Syndrome (GBS) Guillain-Barré Syndrome (GBS) Welcome to our Guillain-Barré Syndrome Information Hub Here we breakdown what is happening to you or a loved in simple but proper terms. Our information is sourced from our Medical Advisory Board, medical texts, and recognised support providers. You'll have information on the symptoms of GBS, the treatment of GBS in the UK, and advice for caring for someone going through Guillain-Barré and beyond. If you have any questions after reading this that you feel haven’t been answered. Please get in touch with us, we will strive to point you in the right direction. What is Guillain-Barré Syndrome (GBS) and the variants? We discuss the basics of GBS – what it is, some of the symptoms you may experience, different types, symptom variants, Miller Fisher, and possible triggers. Read More GBS - 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 How is GBS Diagnosed? We cover examinations, nerve tests such as (EMG and neurophysiology), and lumbar punctures. Read More What is the advice surrounding vaccinations and GBS? Containing information on vaccinations via our Medical Advisory Board and sourced journals. Read More My child has been diagnosed with GBS, what do I do? Contains information on condition management, paediatric intensive care, how you can help, rehab, going home, and an indepth look at return to school. Read More Other acute inflammatory neuropathies Covering Brachial Neuritis and Vasculitic Neuropathy Read More Treatment for GBS including ICU and help from you Containing information on various treatments for GBS. We explore what may happen in the ICU (such as pain management and ventilation information) and how you can help someone with GBS during their stay (such as mental stimulation, keeping them calm, help coming off the ventilator). Read More Mental Health, Well Being, and Work following GBS Contains information on how to care for your mental health whether you’ve experienced GBS or a loved one had GBS. 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 after GBS? We cover support and rehab, returning home and care plans, residual symptoms and pain management, hygiene and health, exercise and physio. Read More Anchor 1 What is Guillain-Barré Syndrome (GBS) We discuss the basics of GBS – what it is, some of the symptoms you may experience, different types, symptom variants, Miller Fisher, and possible triggers. 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 . What is GBS? Symptoms of GBS Is There More Than One Type of GBS? Miller Fisher and Variants Possible Triggers What is GBS? Guillain-Barré (pronounced ghee-yan bar-ray) Syndrome, or GBS for short, is a rare and serious inflammatory neuropathy that damages the peripheral nerves . 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. 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 across the body. They work together as the Nervous System. For example, if you see flames and smell smoke, these messages are passed along the PNS to the CNS. Your brain processes this information, and, realising there is danger, sends messages back along the PNS to your muscles, commanding you to walk, or wheel, to safety. 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). Is GBS infectious? 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. It is neither hereditary nor infectious, so you can’t pass it on to your children, or transmit it to someone else. What causes 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. They allow signals to travel between your PNS and CNS (see quick fact on your 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. Will I recover from GBS? GBS worsens for up to four weeks. Unfortunately, recovery usually takes much longer than this. Most people will eventually make a good recovery, but it can be life-threatening, and some people are left with long-term problems, from severe fatigue to dexterity and mobility issues. GBS is a one-off condition which usually does not happen again, except in around 3% who may suffer GBS more than once, perhaps many years later. 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 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 Poly(radiculo)neuropathy. 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. Symptoms of 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. At first you may have: 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. 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 stabilization) 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. Around 20% of people with GBS develop weakness of the breathing muscles and need mechanical ventilation. 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. About 2-5% of people with GBS die. 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. Possible Triggers 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 which causes severe diarrhoea, typically caught by food poisoning such as from eating 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. Sometimes, no trigger or infection can be identified. What is GBS? Symptoms of GBS more than one type of GBS Miller Fischer Possible Triggers 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 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. 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 . 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) – mild electric shocks are given through the skin to activate the nerves and measure the signals travelling along your arms and legs. electromyogram (EMG) – 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. 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). 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 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. Click here to return to the main GBS topic hub . 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 Treatment for GBS Treatment for GBS can help improve the symptoms and speed up recovery. Most people need to stay in hospital for a few weeks to a few months. Usually either intravenous immunoglobulin (IVIg) or plasma exchange is given if the person cannot walk unaided, or if symptoms are worsening rapidly. Milder cases of GBS usually improve without these treatments. In this section you’ll find information about treatments, what may happen in the ICU, and what Family and Friends Can Do To Help. To skip to a specific section, just hit one of the headers below click here to return to the main GBS topic hub . Intravenous Immunoglobulin Plasma Exchange (Plasmapheresis) Specific Patient Groups Pregnant Women Other Treatments Intensive Care Advice for Friends and Family How Does a Ventilated GBS Patient Feel? Senses Movement Pain Hallucinations Locked-In and Feeling Vulnerable What Family & Friends Can Do To Help Communication Mental Stimulation Financial Worries Comfort Coming off the Ventilator Stay Positive Intravenous Immunoglobulin 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, over a period of five days, and is most effective if given in the first two weeks following onset. Plasma Exchange (Plasmapheresis) 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. Specific Patient Groups Patients with pure MFS tend to be more mildly affected than GBS, and most recover completely without treatment within a few months. Therefore, in pure MFS treatment is generally not recommended, but patients should be monitored and a subgroup may need treatment if they develop significant weakness (considered to be GBS-MFS overlap) or BBE. Pregnant Women Either IVIg or plasma exchange may be given during pregnancy if required. IVIg may be preferred. Other Treatments 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. This may include: A ventilator if you’re having difficulty breathing. 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. Intensive Care Advice for Friends and Family 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. The amount of equipment may seem a bit daunting at first, but you will soon become familiar with all the machinery. 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. 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 think tube to drain urine from the bladder Drain – tube used to remove any build-up of blood or fluid from the body Intensive Care | How Does a Ventilated GBS Patient Feel? Some patients in ICU are fully awake, others are awake but partially sedated with medication to help them relax, and others are kept asleep. If awake, they may be alarmed at the new situation and surroundings, so talk to them calmly and explain what is going on. Intensive Care | Senses They may have reduced or absent sense of taste and smell, and some patients experience visual disturbance. Hearing is unlikely to be affected, and GBS does not affect the brain, so the patient is usually aware of what is going on around them. However, this may be dampened by sedative or painkilling drugs which are often used to make GBS patients more comfortable. Some patients do experience an increase in skin sensitivity so although contact is important, be aware that rarely even a light touch may cause severe pain which the patient cannot easily communicate to you. During the severe phase of the illness, GBS patients can feel very hot or cold and might frequently request a fan to be turned on and off. Intensive Care | Movement GBS is a paralysing condition. The paralysis is temporary but may be extensive, which can be frightening and hard for the patient to accept. Because of the lack of movement, there may be muscle wasting, possibly leading to weight loss. Gentle physiotherapy, even at the early stages, will help to minimise stiffness of joints and muscles. The nurses will regularly turn the patient to prevent bed sores. Intensive Care | Pain Pain is common in GBS and may be experienced to a greater or lesser degree at various sites around the body, for which appropriate medication will be given. Pain levels must always be considered when moving the patient and care taken to ensure that all movements are as gentle as possible. Intensive Care | Hallucinations Hallucinations, unusually vivid daydreams or nightmares are not uncommon for GBS patients when very weak. They may be worsened by sedative or painkilling drugs but can also arise in patients without any drug effects. They are not necessarily frightening, but hallucinations can seem very real, and they may be convinced that these are actual events. Talk to them calmly, using their name, and ask them what is happening, and whether they feel afraid or confused. Explain that they are having a hallucination and that you don’t see or hear what they do, but acknowledge their feelings. Tell them you are there, and everything is ok. Gentle patting may help bring them back, and you could try to turn their attention to something they enjoy, by talking about favourite music or a TV programme they like to watch. Intensive Care | Locked-In and Feeling Vulnerable Many GBS patients are alert and acutely aware of what is going on. They feel vulnerable, isolated and locked-up inside their own body. They are likely to feel anxious and frustrated and may exhibit irrational or uncharacteristic behaviour. It will be difficult to come to terms with what has happened, so do not be surprised if they are tearful, bad tempered or panicky. Mentally and emotionally, loss of movement and inability to speak makes a person feel fragile and vulnerable, so be sympathetic and caring whenever you are with them. What Family & Friends Can Do To Help (WFFCDTH) WFFCDTH | Communication Understand as much as you can about this condition. If you are the person visiting most frequently, introduce yourself to the doctor in charge of the case and don’t be afraid to ask questions. Some doctors are better than others at explaining things, so let them know if you don’t understand. Get to know the regular nursing staff and ask for a daily update on progress. Physiotherapy can start while the patient is still paralysed. Get to know the physio and keep yourself updated on procedure and progress. They can tell you how you can help with exercises between physio sessions. Talk to the speech therapist about communication aids. If facial muscles aren’t paralysed, then lip reading could help. Some people retain finger movement and can write letters in the air or on the palm of the hand. A common method of communication with a patient whose movements are restricted to the eyes and eyelids, is to use a question and answer technique with the patient answering with one blink for ‘yes’ and two for ‘no’. Pointing to the letters on an alphabet board and asking ‘Is it on this line? Is this the letter?’, will help. If the patient is strong enough, they may be able to point at an alphabet board with a finger or pointer attached to a headband. A hospital communication book contains lots of words and images useful in a hospital setting and can pre-empt many questions or comments a ventilated patient is likely to make. Inflammatory Neuropathies UK will send you a free copy on request, that you can leave at the bedside for staff and visitors to use. Another useful tool is an app developed by David Muir, who was ventilated due to muscular dystrophy and became non-verbal as a result. The app is called Passy Muir Trachtools and is free to download in your app store for Apple and android devices. It has several pre-recorded phrases, and allows you to record your own customized words and messages. When you find a communication method that works, make sure you share this with staff and other visitors so they can adopt the same practice. WFFCDTH | Mental Stimulation Remember they are socially isolated and will need to be stimulated. Tell them what day it is and talk about what is happening in the outside world. Read extracts from the news and encourage friends and family to send cards and texts about what they are up to. Remember to include them in all conversations, even if they can’t respond verbally. Make use of your tech! Read to them or offer to play an audio book on their smartphone or tablet. Download films, favourite TV shows and music onto their device and watch or listen together if you can, with one earbud each. WFFCDTH | Financial Worries Financial concerns may be causing anxiety, especially if the patient is the main wage-earner. Get in touch with the Social Worker at the hospital who will advise on benefits. Alternatively, Citizens’ Advice offers free expert advice which you access online, or by phoning your local office. Stay in regular contact with employers and make sure you understand the absence and returning to work processes. There is more information about returning to work later in the booklet. Inflammatory Neuropathies UK may be able to help through our Personal Grants Scheme with travel costs for frequent journeys visiting a family member in hospital. WFFCDTH | Comfort The little things you can do will mean a lot. Do they need a hair wash or a shave? Do nails need manicuring? Can you help by massaging their hands or feet? Eating and drinking while you’re visiting might have a negative impact, if they are unable to swallow anything, so make sure you have something before you arrive. Some patients have pain in the acute stage, others as recovery kicks in, and some have no pain at all. Try to understand what pain they have, if any, and the frequency and type of medication being given to alleviate it. GBS patients tire easily, may be on sedative drugs and may nap quite frequently. They might not want visitors over and above one or two close family members, especially in the early stages following diagnosis and the start of recovery. At the end of your visit, make sure you leave them in the best possible frame of mind. Turn off any device that might cause irritation or disturbance and make sure they have what they need or can attract attention if required. WFFCDTH | Coming off the Ventilator As things improve, they will be taken off the ventilator, often starting with just a few minutes and building up gradually. Patients can get quite panicky at the beginning of this procedure as they have become reliant on the ventilator and might not believe that they can breathe again without it. Reassure them that their natural ability to breathe is returning and that this is the start of getting well. Once off the ventilator, it is likely that they will soon be transferred to a general ward for a time before moving into a rehab unit or being discharged home. Moving out of ICU, where patients are monitored continuously, can be stressful in itself, but it’s all part of recovery, and no one will be moved until the medical team is satisfied that they are ready. WFFCDTH | Stay Positive Your role 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. If it is difficult for you to visit as frequently as you would like, we might be able to help you keep in touch with a smart tablet. Contact Inflammatory Neuropathies UK for further details. IG Plasma Patient Groups Pregnant Other treatments ICU FriendsFamily 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. Balance and co-ordination problems are also not uncommon. 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. For most people, they gradually decrease over time, but you may feel some of them coming back in a milder form at periods like that for a year or two. It is very unlikely that this indicates a recurrence of GBS, which is very rare. Unfortunately, around 15% of people will not make a good recovery, and will experience permanent mobility and dexterity problems, perhaps remaining dependent on a wheelchair or other mobility aid. Persistent pain and fatigue may also be an ongoing issue that needs to be managed. 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 : 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, your doctor (rather than Google!) will be able to advise you on anything that may help you during recovery. 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

Plasma and Immunoglobulin Throughout our website and across our social media, Inflammatory Neuropathies UK will often highlight the importance of plasma in the creation of treatments like IVIg, and SCIg. The following is a clear and accessible overview of plasma, and these treatments. We also take a look at pregnancy and immunoglobulin treatment. Plasma Plasma is the liquid part of your blood . Your blood is comprised of approximately: 55% liquid plasma 44% red blood cells 1% white blood cells and platelets Plasma carries blood cells, proteins , nutrients, and salts throughout your body. It also carries waste products to your kidneys and liver. Among the proteins in plasma are antibodies . These recognise and fight infections such as viruses and bacteria. They are a vital part of your immune system. However, in Inflammatory Neuropathies, these antibodies can go wrong. Instead of protecting you and fighting off infections, they mistakenly recognise your nerves as a threat and launch an attack. One of the most effective ways to interrupt or halt the harmful immune response is to "overwhelm" the faulty antibodies with healthy ones. This is what happens in IVIg and SCIg. Immunoglobulin - IVIg and Scig IVIg stands for Intravenous Immunoglobulin, and SCIg stands for Subcutaneous Immunoglobulin . Both are treatments made from donated human plasma. People can donate plasma directly at a limited number of centres across the UK, but it is also taken as part of a routine blood donation (remember, 55% of your blood is plasma). T his yellow-ish liquid is separated from the other blood components and goes to specialist where it is processed into immunoglobulin. The process is called Fractionation. This can then be administered as IVIg or SCIg . IVIg Someone receiving IVIg treatment visits a hospital or clinic that can perform the procedure. A drip is then inserted into their vein (Intravenous) and over the course of several hours, their body will be flooded by a healthy supply of antibodies. SCIg Instead of being delivered into a vein through a drip, SCIg is given into the fatty tissue just under the skin (the “subcutaneous” layer). This is usually done at home using a small portable pump and fine needles by the patient or a carer. For people living with a chronic condition like CIDP or MMN, SCIg can offer several potential benefits like greater independence and less hospital visits. However, it is not always suitable for everyone for various reasons - including suitability, cost, training, and availability. How often and how much? Treatment varies depending on the condition. In acute conditions like Guillain–Barré Syndrome (GBS), IVIg may be given just once or twice. The sheer volume of IVIg reduces the inflammation, interrupts the immune attack, and the recovery process can now begin. In the case of chronic conditions like CIDP or MMN , the attack is temporarily calmed. Because the condition is ongoing, treatment needs to be repeated regularly. Your care team will work out the frequency and dose that is right for you. Over time, this may be fine-tuned and adjusted to help you achieve the best possible quality of life. When should I receive treatment? It can help to picture a child's drawing of the sea. There's waves that go up and down sharply in dips and spikes. 'dips ' - the bottom of the wave: minimal symptoms 'spikes ' - the top of the wave: symptoms worsening. The first time you receive treatment, you'll likely be in a spike phase. The treatment works to bring you down into a dip where symptoms are calmer and independence is, hopefully, restored. Over time - often 2–5 weeks, though this varies - symptoms may gradually begin to return as you move toward another spike. Receiving treatment early, as symptoms begin to reappear, is generally more effective than waiting until they are fully established. In an ideal world, treatment timing would smooth those peaks and troughs into a steady, balanced line. In reality, that isn’t always possible — but careful planning between you and your care team can help reduce the severity of those waves as much as possible. Long term IVIg Repeated IV access can impact your veins, particularly if you're receiving treatment frequently for a long time. Over time, some (but not all) may find their veins become harder to find, or narrow and scar. You might find you bruise more easily, or experience a little discomfort during the procedure. To avoid this, your infusion team will likely rotate vein sites so they're not overwhelming the same spot. Good infusion practice will help keep your veins as healthy as possible. If you're finding your infusion sites get irritated, your team may slow down infusion rates to lessen the stress in that area. In some rare cases, they may look at inserting something called a long-term venous access device such as a port . If your veins really are responding negatively to the treatment, they may also look at switching you to a different treatment including SCIg . IVIg/SCIg and Pregnancy Immunoglobulin is made from human plasma and contains natural antibodies. It does not contain a live virus and is not a drug in the traditional sense, it is a purified blood product. Because it works by regulating the immune system rather than suppressing it, it is generally regarded as being safe to continue/receive during pregnancy. In fact, it has been used safely in pregnancy for many years not just in neurological conditions, but obstetrics and immunology. If you're receiving SCIg into your abdomen, some practical adjustments may be needed - such as alternative infusion sites. If you're already pregnant, your neurology and maternity teams will work closely together for the safety of you and your unborn child. If you are not yet pregnant, but plan to start a family, speak to your neurologist early to allow for planning and any required adjustments. Will my baby be impacted? While Immunoglobulin does cross the placenta in late pregnancy, this is a normal and healthy process. All mothers pass antibodies to their babies to help protect them in the first few months of life. There is no evidence that IVIg or SCIg causes harm to the developing baby when prescribed appropriately. Breastfeeding As antibodies are naturally present in breast milk, breastfeeding is also usually considered compatible with immunoglobulin treatment,

Impact Report Interdum et malesuada fames ac ante ipsum primis in faucibus. Vestibulum laoreet blandit diam, ac cursus dolor dignissim vitae. Suspendisse sed metus tortor. Donec semper posuere neque, non vulputate sem venenatis ut. Praesent varius diam non diam tempus, quis imperdiet ex suscipit. Suspendisse vitae blandit leo. Morbi vel molestie justo, mollis luctus turpis. Cras cursus enim sed facilisis suscipit. Suspendisse in scelerisque lacus. Aliquam tempus ante in ligula convallis semper. Donec in quam nec nisl facilisis tincidunt ut vel risus. Aliquam viverra accumsan tortor. Nunc congue orci lacus, et consequat tortor ultricies vitae. Sed laoreet elit nec ultrices viverra. Quisque at risus vitae ante dapibus rhoncus. Vivamus porttitor pellentesque lacus nec pharetra. In ullamcorper lacus vitae volutpat dictum. Nulla placerat in nisi sed porttitor. Aenean varius ac sapien nec sagittis. Vestibulum ante ipsum primis in faucibus orci luctus et ultrices posuere cubilia curae; Integer volutpat nulla eu massa finibus, non posuere augue convallis. Integer semper tincidunt consectetur. Vivamus non metus et velit euismod congue. Vestibulum tincidunt hendrerit ornare. Nulla consequat lorem et ipsum commodo, non vehicula ipsum imperdiet. Integer aliquam non arcu sed iaculis. Nulla tempor sapien non ex imperdiet gravida. Pellentesque et justo sit amet ipsum maximus sollicitudin posuere eget nisi. Nullam convallis ultrices magna ac condimentum. Integer suscipit aliquet mi nec dapibus. Maecenas mollis lacus non condimentum pellentesque. Integer sed ultricies lorem, facilisis maximus ante. Aliquam erat volutpat. Morbi erat mauris, fringilla eu massa quis, malesuada pulvinar diam. Click here

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

Membership Registration The Members of Inflammatory Neuropathies UK are like shareholders - they help shape our direction, influence our decisions, and guide our priorities. We offer two types of Membership: Voting Members and Non-voting Members. Both are equally valued, but Voting Members play a more active role in the governance of the charity. By becoming a Voting Member, you'll be invited to vote at our Annual General Meeting (AGM) and other key events. In fact, one of the most significant moments in our history - the 2025 transition from GAIN to Inflammatory Neuropathies UK - was made official by our Voting Members. Membership is open to everyone and completely free. However, if you’d like to support our work, you’re also welcome to make a voluntary donation, either as a one-off or a regular gift. If you’re ready to join our community, simply complete the form below. If you have any questions about Membership, feel free to email us at hello@inflammatoryneuropathies.uk or call 01529 469910. We’d love to hear from you! Register or Renew membership

Financial Personal Grants Read More Benefits Read More Continuing Healthcare Read More Personal Grants Dealing with a condition can have so many consequences. It can impact on your finances so further adding to the worry and stress. Maybe it’s simply extra fuel bills or parking costs from all the hospital visits or it could be having to buy special equipment to facilitate life at home. It all adds up and at a time when you may not be able to work. We have a grant that is specifically for these purposes. To find out if you are eligible, fill in the form below. Personal grants can be applied for by residents in the United Kingdom and Republic of Ireland however, we are unable to accept applications from overseas. Requests for a personal grant will only be considered if the hardship is due to, or has been aggravated by GBS, CIDP or an associated inflammatory neuropathy. Grants are not awarded where the support can be obtained through a statutory body or process. Grants can be made up of smaller grants paid over a period of time or as a one off payment. Some examples of grants: Medical or other equipment (possibly on loan) – such electric wheelchairs or adaptable toilet seats Adaptations to homes – such as railings, or a shower grab rail payment of travelling expenses – such as parking charges for visiting patients in hospital, or train tickets Where the grant is for the provision of equipment, the equipment would become the property of the applicant rather than the charity. The applicant is responsible for the ongoing maintenance of the equipment and any problems should be taken up with the supplier/manufacturer. Recurring household bills or debts cannot be considered – for these you should seek help from your local Social Services, Citizens’ Advice Bureau, Citizens’ Advice Scotland, Citizens’ Information Republic of Ireland, the consumer Credit Counselling Service or the National Debtline. How to apply Please complete this Application form (which also includes guidance notes) All information supplied by you will be treated by Inflammatory Neuropathies UK in confidence. If the application form is a little daunting, don’t worry. Either email us directly on hello@inflammatoryneuropathies.uk or fill in the contact form at the bottom of the page and we can provide help. Completed Application Forms should be sent to: Inflammatory Neuropathies UK Glennys Sanders House, Pride Parkway, Sleaford NG34 8GL For any queries please email hello@inflammatoryneuropathies.uk Benefits Don’t be afraid or embarrassed to ask for help. The cost of living has impacted all of us, and for those living with conditions that can impact their ability to work, this can cause significant strain. Inflammatory Neuropathies UK are working on producing information around benefits that may be more applicable to your situation such as ESA, Universal Credit, and accessing a Blue Badge for your car. For now, please visit Citizens Advice. These are excellent resources and many towns and cities have local facilitates you can access to receive support from a local voice. England Scotland Wales Northern Ireland Care Needs Assessment/ Continuing Healthcare Some people with long-term complex health needs qualify for free health and social care arranged and funded by the NHS. The results of this can include funding carers, funding accessible adaptions, or, if your family is supporting you, allowing you to use the funds that would normally be spent on carers on day to day expenses. In Scotland, personal and nursing care is free for eligible individuals, but you may still need to perform a Care Needs Assessment. Learn more about these assessments via the NHS The criteria can be quite complex, so we also recommend reading more via the link below. They break down Continuing Healthcare, preparing for an assessment, and challenging an assessment in easy to read detail - it's a brilliant resource: beaconchc.co.uk It's important to note, to qualify for funding requires significant impairment and many of our community may not qualify. It can be really hard hearing a support path is closed to you when you feel you qualify. If you'd like to chat about it, please reach out to us. We may not be able to overturn a decision, but we're here to chat about what happened, and where possible, sign post you to other options.

Your Stories We can give you all the information, facts, and support in the world. However, what we can't do is tell your story as well as... you. Personal stories are vital to Inflammatory Neuropathies UK's mission. They help us raise real awareness by hitting the emotional heart of the conditions. They help us support bids for research by demonstrating why these conditions need support. Perhaps most importantly, they help others in a similar position know they aren't alone. If you'd like to tell your story, contact hello@inflammatoryneuropathies.uk . You can either write your own, or be interviewed by a member of the team who will then create your story. We'd love if you'd be happy recording a clip of yourself speaking for social media as well! Megan's Story | MMN Jason's Story | GBS Leanne's Story | GBS Pedro's Story | GBS GBS - 21 Months On | Sue's Story Hand Control Driving | Julie Wilson's GBS/AMSAN Adaptions My Lake District Fell Dream | CIDP Paul's Story | CIDP Rowan's Story | Childhood CIDP Kathleen's Story | GBS Kevin's Story | GBS Recurrence To Hell and Back | Linda's Guillain-Barré Syndrome Story Nicole's Story | GBS Neil's Story | GBS John's Story | MMN Denyse's Story | GBS Dionne's Story | GBS Pete’s Story | AMSAN

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

Medically sourced information on Chronic Inflammatory Demyelinating Polyradiculoneuroapthy (CIDP) CIDP Welcome to our Chronic Inflammatory Demyelinating Polyradiculoneuropathy (CIDP) Information Hub Here we breakdown what is happening to you or a loved in simple but proper terms. Our information is sourced from our Medical Advisory Board, medical texts, and recognised support providers. If you have any questions after reading this that you feel haven’t been answered. Please get in touch with us, we will strive to point you in the right direction. If you have any questions after reading this that you feel haven’t been answered. Please get in touch with us, we will strive to point you in the right direction. What is Chronic Inflammatory Demyelinating Polyradiculoneuropathy (CIDP?) We discuss the basics of CIDP – what it is, some of the symptoms you may experience, different types, and share some simple language explanations. Read More How is CIDP Diagnosed? We cover examinations, nerve tests such as (EMG and neurophysiology), and lumbar punctures. Read More Treatment for CIDP inc. Hospital Containing information on various treatments for CIDP, and discusses the concept of a 'cure'. We also cover how you can help someone with CIDP should a longer stay in hospital be required. Read More My child has been diagnosed with CIDP, what do I do? Contains information on condition management, paediatric intensive care, how you can help, rehab, going home, and an indepth look at return to school. Read More CIDP - 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 CIDP Diagnosis Contains information on how to care for your mental health whether you’re living with CIDP 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 What is the advice surrounding vaccinations and CIDP? Containing information on vaccinations via our Medical Advisory Board and sourced journals. Read More Other Chronic Inflammatory Neuropathies Covering MMN, Lewis-Sumner, and POEMS Read More Anchor 1 What is Chronic Inflammatory Demyelinating Polyradiculoneuropathy This section will introduce you to Chronic Inflammatory Demyelinating Polyradiculoneuropathy, known more commonly as CIDP. What is CIDP? What are the Symptoms of CIDP? Acute Onset CIDP (A-CIDP) What is CIDP? Chronic Inflammatory Demyelinating Polyradiculoneuropathy (CIDP) is a neurological disorder characterized by progressive weakness and impaired sensory function in the legs and arms. The disorder, which is sometimes called Chronic Relapsing Polyneuropathy , is caused by damage to the myelin sheath of the peripheral nerves. You need to have had symptoms for at least 8 weeks for CIDP to be considered. Although it can occur at any age and in both genders, CIDP is more common in young adults, and in men more so than women. IN simple terms: Polyneuropathy 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. Poly is a prefix meaning "many", so a Polyneuropathy is a condition impacting multiple nerves. 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 across the body. They work together as the Nervous System. For example, if you see flames and smell smoke, these messages are passed along the PNS to the CNS. Your brain processes this information, and, realising there is danger, sends messages back along the PNS to your muscles, commanding you to walk, or wheel, to safety. 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. They allow signals to travel between your PNS and CNS (see quick fact on your 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. The course of CIDP varies widely among individuals. Some may have a bout of CIDP followed by spontaneous recovery, while others may have many bouts with partial recovery in between relapses. The disease is a treatable cause of acquired neuropathy and initiation of early treatment to prevent loss of nerve Axons is recommended. However, some individuals are left with some residual numbness or weakness, and abnormal sensations. CIDP is closely related to Guillain-Barre syndrome and it is considered the chronic counterpart of that acute disease. What are the Symptoms of CIDP? Symptoms of CIDP usually develop slowly starting in the feet and legs before progressing to other parts of the body. The symptoms experienced vary considerably between patients and may be vague and confusing to both the patient and the doctor. Subjective symptoms such as fatigue and sensory disturbance are difficult to communicate. These symptoms may remain mild and result in only minor disruption of the patent’s normal life. Alternatively, they may become progressive and gradually worse over a period of several weeks, months or even years — sometimes but very rarely, to the extent that the patient is bed bound with profound weakness of the arms. Look for: numbness pins and needles muscle weakness fatigue loss of deep tendon reflexes Acute Onset CIDP (A-CIDP) Due to similarity in the early stages up to 16% of patients will be misdiagnosed with GBS (AIDP), meaning patients may not receive the best treatment for their condition or understand the long-term outcomes. Patients with A-CIDP are less likely to have autonomic nervous system involvement, facial weakness, a preceding infectious illness, or the need for mechanical ventilation. Around 8%-16% of GBS patients may relapse shortly after improvement or stabilization following initial immunological therapy. This is an important clinical issue because maintenance treatment is often required in CIDP. The diagnosis of A-CIDP should be considered when the condition of a patient with GBS deteriorates after nine weeks from onset, or when deterioration occurs three times or more. What is CIDP? Symptoms of CIDP A-CIDP What Causes CIDP and How is it Diagnosed? Although sometimes a trigger is apparent, and in contrast to GBS, most patients with CIDP cannot identify a preceding viral or bacterial infection. GBS normally progresses over 2-4 weeks, then plateaus, improves over several months and does not usually recur. CIDP has ongoing symptoms for over 8 weeks and usually does not improve unless ongoing treatment is given. How is CIDP Diagnosed? CIDP can be difficult to diagnose as there is no single, conclusive diagnostic test for it. The symptoms are often vague and can be produced by a number of different conditions. Therefore, a long period of time may elapse before a diagnosis of CIDP is made. A diagnosis of CIDP requires the following: Weakness of at least two limbs Complete or partial loss of tendon reflexes Progression or relapse eight weeks or more after initial disease onset Evidence of myelin damage in the peripheral nerves from nerve conduction studies A diagnosis of CIDP is usually made on clinical grounds but with evidence from: Nerve conduction studies Lumbar puncture MRI scan Nerve biopsy Ruling out other diseases that can cause demyelinating neuropathy Family history to completely rule out an inherited neuropathy Contact with possible toxins or drugs that could cause neuropathy Other conditions – diabetes, alcohol dependency, arthritis or hepatitis 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) – mild electric shocks are given through the skin to activate the nerves and measure the signals travelling along your arms and legs. electromyogram (EMG) – 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 or CIDP, 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 sample of fluid will be checked for signs of problems that can cause similar symptoms such as an infection. Occasionally the diagnosis can be delayed for a few days while they are checking the results, and your doctor may start the treatment just to be on the safe side. Treatment for CIDP & Hospital Advice The treatments with clinically proven efficacy in CIDP are immunoglobulin, steroids, and plasma exchange, all of which have been shown to be superior to placebo in clinical trials. In other studies, they have been shown to be equivalent to one another in efficacy: between 50 and 80% of patients respond to each of the treatments. Failure to respond to one treatment does not mean that the other treatments won’t work either (unless the diagnosis if wrong). 15% of patients do not respond to any of the three treatments. Sometimes it may be necessary for someone diagnosed with CIDP to enter hospital for a longer stay while awaiting initial treatment/being treated. Not everyone with CIDP will require a stay in hospital, but if CIDP comes on very rapidly, presenting more like GBS, it may be necessary to be admitted to ICU for a time. This won’t apply to them majority of people diagnosed with CIDP. Intravenous Immunoglobulin Plasma Exchange (Plasmapheresis) Corticosteroids Is there a Cure? Hospital ICU Support and Rehabilitation General Prognosis What Family & Friends can do to Help Communication Mental Stimulation Financial Worries Comfort Coming off the Ventilator Stay Positive Intravenous Immunoglobulin The most commonly used treatment, particularly for motor dominant CIDP, is intravenous immunoglobulin (IVIg). Immunoglobulin is made from donated blood that contains healthy antibodies which can help stop the harmful antibodies damaging your nerves. If it works there will be a quick response in a matter of weeks, with improvement in strength and function. Some patients (15-30%) only need a single course. IVIg is given in hospital and if it needs to be given long term by regular infusion typically every 6 weeks. This can have an impact on the patient’s work, travel plans, or ability to look after family members, as their infusions need to be fitted around these factors. In some parts of the country it is possible to receive subcutaneous immunoglobulin (also known as SCIg or SubCut) at home which is more convenient for patients. With SCIg, immunoglobulin is delivered by a needle into the fatty tissues under the skin, where it enters the circulation slowly over a few days. There isn’t much room under the skin, so the dose of immunoglobulin given is smaller than with IVIg. For this reason, SCIg is usually given every week. Nearly everybody on SCIg learns how to have treatment at home, with each session lasting up to about two hours. As with all treatments, side effects can occur with IVIg, although usually these are minimal and do not require the treatment to be stopped. It is helpful if you drink plenty of fluid whilst you are receiving IVIg. Transient side effects, which often respond to changes in the rate of administration of the infusion, include headache and low blood pressure and occasionally, a rash can develop. Severe complications from IVIg use are very rare. IVIg thickens the blood slightly so particular consideration of its use is given to patients with kidney failure, previous heart disease, stroke or blood clots. Plasma Exchange (Plasmapheresis) 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 Plasma exchange involves having the patient attached to a machine to remove some of their blood and replace with other blood product (eg human albumin), over 5 days. PE should be considered in preference to IVIg in cases of non-motor dominant CIDP. Corticosteroids Corticosteroids should also be considered in preference to IVIg in cases of non-motor dominant CIDP. Corticosteroids are easy to administer either as daily or alternate daily treatments, or monthly oral or intravenous regimes. In older patients, there are often competing medical conditions which mean that they need to be used with caution or avoided altogether e.g. if a patient has poorly controlled diabetes or osteoporosis, or if they have recurrent chest infections and immunosuppression might put them at risk of overwhelming infection. A younger patient may have fewer comorbidities but would also potentially be facing longer term treatment. If a patient needs very frequent IVIg infusions then a neurologist might consider adding in a steroid or another immunosuppressant agent, and if IVIg does not offer clear benefits, then steroids are the obvious next treatment option. There is a difference in cost between the treatment options, with both IVIg and plasma exchange costing thousands of pounds per course whilst steroids are relatively cheap, but this is not a deciding factor in which treatment is provided. Is there a Cure? It depends how you define ‘cure’, but in CIDP literature this has been defined as ‘remission of over 5 years off treatment’, which has been reported in about 25% of patients treated with steroids for less than one year. Neurologists would more usually use the term ‘remission’ in CIDP (i.e. stability without treatment). Shorter term remission is more common than ‘cure’: there is evidence from studies that up to 40% of patients with CIDP may be in remission after one year of treatment with either steroids or IVIg. It is for this reason that it is advised that the need for treatment is reviewed on an annual basis if patients are no longer showing any or little fluctuation in their clinical symptoms. Although many people remain free of symptoms following remission, there is no guarantee that there will be no further relapse in the future. 15% of patients do not respond to any of the three treatments. Hospital If you do require a stay in hospital, you’ll be closely monitored to check for any problems with your lungs, heart or other body functions. You’ll also be given treatment to relieve your symptoms and reduce the risk of further problems. This may include: A ventilator if you’re having difficulty breathing A feeding tube 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 Medicine and/or special leg stockings to prevent blood clots Once you start to improve, you may also need extra support to aid your recovery. Depending on the severity of symptoms, and how well they respond to treatment, you may need help with everyday tasks, your home may need adaptations, or you may need a care package in place. 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 CIDP or another chronic inflammatory neuropathy can also severely impact your mental wellbeing. General Prognosis Treatment of CIDP is usually very effective with about 80% of new cases having a dramatic response to therapy. Although some patients go into a long-term remission after a short course of treatment, many require long term treatment of one form or another. Drug treatments are generally thought to work by suppressing the autoimmune response, which in turn reduces the disabling symptoms of the disease. What Family & Friends Can Do To Help (WFFCDTH) If someone is hospitalised, especially in ICU, here is how you can help. WFFCDTH | Communication Understand as much as you can about this condition. If you are the person visiting most frequently, introduce yourself to the doctor in charge of the case and don’t be afraid to ask questions. Some doctors are better than others at explaining things, so let them know if you don’t understand. Get to know the regular nursing staff and ask for a daily update on progress. Physiotherapy can start while the patient is still paralysed. Get to know the physio and keep yourself updated on procedure and progress. They can tell you how you can help with exercises between physio sessions. Talk to the speech therapist about communication aids. If facial muscles aren’t paralysed, then lip reading could help. Some people retain finger movement and can write letters in the air or on the palm of the hand. A common method of communication with a patient whose movements are restricted to the eyes and eyelids, is to use a question and answer technique with the patient answering with one blink for ‘yes’ and two for ‘no’. Pointing to the letters on an alphabet board and asking ‘Is it on this line? Is this the letter?’, will help. If the patient is strong enough, they may be able to point at an alphabet board with a finger or pointer attached to a headband. A hospital communication book contains lots of words and images useful in a hospital setting and can pre-empt many questions or comments a ventilated patient is likely to make. Inflammatory Neuropathies UK will send you a free copy on request, that you can leave at the bedside for staff and visitors to use. Another useful tool is an app developed by David Muir, who was ventilated due to muscular dystrophy and became non-verbal as a result. The app is called Passy Muir Trachtools and is free to download in your app store for Apple and android devices. It has several pre-recorded phrases, and allows you to record your own customized words and messages. When you find a communication method that works, make sure you share this with staff and other visitors so they can adopt the same practice. WFFCDTH | Mental Stimulation Remember they are socially isolated and will need to be stimulated. Tell them what day it is and talk about what is happening in the outside world. Read extracts from the news and encourage friends and family to send cards and texts about what they are up to. Remember to include them in all conversations, even if they can’t respond verbally. Make use of your tech! Read to them or offer to play an audio book on their smartphone or tablet. Download films, favourite TV shows and music onto their device and watch or listen together if you can, with one earbud each. WFFCDTH | Financial Worries Financial concerns may be causing anxiety, especially if the patient is the main wage-earner. Get in touch with the Social Worker at the hospital who will advise on benefits. Alternatively, Citizens’ Advice offers free expert advice which you access online, or by phoning your local office. Stay in regular contact with employers and make sure you understand the absence and returning to work processes. There is more information about returning to work later in the booklet. Inflammatory Neuropathies UK may be able to help through our Personal Grants Scheme with travel costs for frequent journeys visiting a family member in hospital. WFFCDTH | Comfort The little things you can do will mean a lot. Do they need a hair wash or a shave? Do nails need manicuring? Can you help by massaging their hands or feet? Eating and drinking while you’re visiting might have a negative impact, if they are unable to swallow anything, so make sure you have something before you arrive. Some patients have pain in the acute stage, others as recovery kicks in, and some have no pain at all. Try to understand what pain they have, if any, and the frequency and type of medication being given to alleviate it. CIDP patients may tire easily, may be on sedative drugs and may nap quite frequently. They might not want visitors over and above one or two close family members, especially in the early stages following diagnosis and the start of recovery. At the end of your visit, make sure you leave them in the best possible frame of mind. Turn off any device that might cause irritation or disturbance and make sure they have what they need or can attract attention if required. WFFCDTH | Coming off the Ventilator As things improve, they will be taken off the ventilator, often starting with just a few minutes and building up gradually. Patients can get quite panicky at the beginning of this procedure as they have become reliant on the ventilator and might not believe that they can breathe again without it. Reassure them that their natural ability to breathe is returning and that this is the start of getting well. Once off the ventilator, it is likely that they will soon be transferred to a general ward for a time before moving into a rehab unit or being discharged home. Moving out of ICU, where patients are monitored continuously, can be stressful in itself, but it’s all part of recovery, and no one will be moved until the medical team is satisfied that they are ready. WFFCDTH | Stay Positive Your role 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. If it is difficult for you to visit as frequently as you would like, we might be able to help you keep in touch with a smart tablet. Contact Inflammatory Neuropathies UK for further details. IG Plasma Corticosteroids Cure FriendsFamily Hospital My child has been diagnosed with CIDP My Child has been Diagnosed with Chronic Inflammatory Demyelinating Polyradiculoneuropathy (CIDP), what do I do? Although more common in adults, CIDP can affect anyone of any age. 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 CIDP, 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. How is Your Child’s Condition Managed? What is Paediatric Intensive Care? Things You Can Do To Help 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. 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 CIDP 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 Dieticians, Health Care Assistants, Family Liaison Nurses, Play Specialists, Chaplains and Interpreters. What is Paediatric Intensive Care? A small amount of children with CIDP will initially become so weak that they cannot breathe without the support of a ventilator. This may require a stay in Paediatric Intensive Care, it's similar to adult Intensive Care, but the staff (many of whom are listed above) specialise in working with young people. 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. Going Home There are ways of helping children to cope and adjust to what is happening to them. 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 Going Home Back to School CIDP 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. 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” 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 CIDP diagnosis This section will provide useful links and sources to help support your mental health during CIDP. 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 CIDP 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 CIDP 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 What happens after CIDP? CIDP - 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 CIDP 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: 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 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 Treatment of CIDP is usually very effective with about 80% of new cases having a dramatic response to therapy. Although some patients go into a long-term remission after a short course of treatment, many require long term treatment as described earlier. 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, CIDP does not weaken or damage your immune system, and having CIDP 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. 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 What is the advice on CIDP and vaccinations What is the advice surrounding vaccinations and Chronic Inflammatory Demyelinating Polyradiculoneuropathy (CIDP)? 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.” Live attenuated vaccines should be avoided by anyone whose immune system is suppressed, due to taking corticosteroids to treat CIDP for example. IN simple terms: Live Attenuated Live attenuated vaccines use a weakened (attenuated ) version of a pathogen (bacteria or virus) to stimulate an immune response without causing illness in healthy individuals. 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. 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/ Other Chronic Inflammatory Neuropathies CIDP sounds like a very focussed ailment, but much like GBS and MMN, there are a host of variants that can cause confusion, in both diagnosis and awareness. Let’s have a look at some of these. Paraproteinaemic Demyelinating Neuropathy (PDN) Multifocal Motor Neuropathy (MMN) or MMN with Conduction Block (MMNCB) MADSAM also known as Lewis-Sumner syndrome Chronic Idiopathic Axonal Neuropathy Sensory Neuropathy POEMS Syndrome Paraproteinaemic Demyelinating Neuropathy (PDN) Some doctors regard the clinical, electrophysiological and pathological features of the demyelinating paraproteinaemic neuropathies and of CIDP as closely similar and almost indistinguishable. Sometimes described as: Chronic Demyelinating Neuropathy associated with a benign paraprotein CIDP associated with paraprotein CIDP with paraproteinaemia Antibody-producing bone marrow cells go out of control and produce large numbers of the same antibody. The antibody (or immunoglobulin) sometimes damages nerve fibres causing a peripheral neuropathy. Some doctors regard the clinical, electrophysiological and pathological features of the demyelinating paraproteinaemic neuropathies and of CIDP as closely similar and almost indistinguishable. These neuropathies are usually late-onset in terms of age and are mixed motor and sensory, although the severity of sensory loss tends to be greater compared with CIDP. There is usually more pain but less severe weakness and impairment. Most patients respond to corticosteroids, cytotoxic drugs, or plasma exchange. Multifocal Motor Neuropathy (MMN) or MMN with Conduction Block (MMNCB) Sometimes thought of as a rare variant of CIDP. However, there are differences that are more prominent than the similarities. MMN patients commonly have asymmetric weakness of the distal (far) muscles, while in CIDP, proximal (near) symmetric weakness is more common. The remitting and relapsing course that may occur in CIDP is uncommon in MMN. Patients with MMN rarely have significant sensory symptoms, unlike CIDP. Increased protein level in the cerebrospinal fluid of MMN patients is rare. Treatment with IVIg is usually effective. MADSAM also known as Lewis-Sumner syndrome Multifocal acquired demyelinating sensory and motor neuropathy is a chronic condition with similarities to multifocal motor neuropathy but with enough differences, especially in treatment, to have acquired its own definition. Some report it to be an asymmetrical variant of CIDP. MMN and MADSAM respond to IVIg. Chronic axonal neuropathies are common, particularly as a result of diabetes or alcoholism. However, the medical literature does report cases of immune-mediated chronic axonal neuropathy though there are suggestions that this is a secondary result of myelin damage that ultimately appears to be the primary cause of the condition. Sub-acute Inflammatory Demyelinating Poly(radiculo)neuropathy (SIDP) GBS is defined when the nadir (worst point) occurs within four weeks of first symptoms, and CIDP is defined when the nadir comes after at least eight weeks. An illness peaking after four weeks but before eight weeks may be called subacute and will be treated as CIDP or GBS depending on which it best resembles. Chronic Idiopathic Axonal Neuropathy If no cause for the peripheral neuropathy can be discovered, doctors call it ‘idiopathic’ that means ‘of its own cause’. This label probably covers a number of different causes which future research may uncover. With rare exceptions, chronic idiopathic axonal neuropathy occurs in older people, only worsens very slowly (and sometimes remains stationary), and does not become disabling. It is most commonly a sensory neuropathy causing numbness, tingling and discomfort in the feet that may gradually spread up the shins. People may become slightly unsteady, and weakness of the ankles may develop. The amount of pain is variable. Some people have very little pain but more weakness. Others have little weakness but more pain. Sensory Neuropathy Also known as sensory ganglionopathy, dorsal root ganglionopathy or sensory ganglionopathy, this is a rare subgroup of peripheral nervous system diseases with specific characteristics, such as the primary and selective destruction of the dorsal root ganglia (DRG) neuron in the spinal cord and the trigeminal ganglia neuron in the skull. It has a typical clinical presentation, with sensory deficits that are not dependent on length and patients often report a lack of coordination of muscle movements. There are several proposed mechanisms for the pathophysiology of the condition. The diagnosis is guided by the presenting symptoms and confirmed with diagnostic tests to differentiate from other related conditions. Treatment of sensory ganglionopathy is often difficult and patients often stabilize but fail to improve significantly. There are reports of improvement in immune-mediated and paraneoplastic sensory ganglionopathy following treatment with intravenous immunoglobulin. Quickly treating the underlying cause, such as the underlying neoplasia, may also be helpful. People that suffer from sensory neuronopathy are more likely to be affected by other autoimmune diseases. A differential diagnosis is important to distinguish sensory neuronopathy from other related conditions, such as sensory and ataxic neuropathy. These conditions may include Sjögren’s Syndrome, autoimmune hepatitis and celiac disease. POEMS Syndrome POEMS is a rare condition caused by the body producing abnormal plasma cells (a type of blood cell which produces antibodies to fight off infections). This blood disorder affects multiple organs in the body. It is named after the five common features of the syndrome described below. P olyneuropathy nerve damage leading to weakness, numbness and pain in the arms and legs O rganomegaly an enlarged spleen and/or liver E ndocrinopathy hormonal problems M -protein or Monoclonal plasma cell disorder an overproduction of abnormal plasma cells which lead to other multi system effects S kin changes darkening to skin, red spots on the body, hair growth Paraprot MMN Madsam CIAN sensory neuropathy POEMS