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

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

Medically sourced information on POEMS syndrome POEMS Welcome to our POEMS Information Hub POEMS syndrome is a rare disorder with a range of features, including Peripheral Neuropathy (damage to the nerves) and abnormal Immune Cells called Plasma Cells. The exact causes are not well understood. Symptoms can affect many parts of the body. Treatment will depend on how localised the abnormal Plasma Cells are, and may include Radiotherapy, Stem Cell Transplantation, and various drugs treatments often used in combination. Outlook for patients after treatment has increased greatly over the past few years. Let's dive into this in a little more detail, or click a header to go directly to a section. What is POEMS We discuss the basics of POEMS Syndrome Read More What are the Causes and Symptoms of POEMS? What triggered POEMS? Read More How is POEMS diagnosed? What tests can you expect your consultant to carry out? Read More How is POEMS treated? Now you've received a POEMS diagnosis, how will you be treated? Read More POEMS - 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 POEMS Diagnosis Contains information on how to care for your mental health whether you’re living with MMN or a loved one had a diagnosis. We discuss sexual relationships, before a section on returning to work – how to approach and talk to your employer after an absence. Read More What happens next? We cover support and rehab, prognosis, physio, and pain management, hygiene, and finances Read More Anchor 1 What is POEMS Syndrome? POEMS is a rare disorder than affect affect multiple systems in the body. It is named after five common features of the syndrome. Polyneuropathy Also known as Peripheral Neuropathy, Polyneuropathy is nerve damage to various Peripheral Nerves. Your Peripheral Nerves are all those nerves outside of your brain and spinal cord (the Central Nervous System ) that transmit signals to control muscles, movement, touch, and sensation. This network of nerves is known as the Peripheral Nervous System . Organomegaly The enlargement of organs, such as the liver, spleen, or lymph nodes. Endocrinopathy Abnormal function of Endocrine Glands. Your Endocrine Glands are responsible for hormone production. These hormones regulate various bodily functions, including metabolism, growth, reproduction, and mood. Monoclonal Plasma Cell Disorder Disorder involving abnormal plasma cells. We'll break this down at the foot of this section. Skin Changes Certain skin changes are characteristic in POEMS syndrome, including Hyperpigmentation. Hyperpigmentation is the darkening of an area of skin. The above are the most common features of the syndrome, however there are also a range of other features (or 'criteria') that may occur in POEMS. Not every patient will have these, but it is important for you and/or your health care provider to look for: Bone Growth Abnormal (“sclerotic”) bone growth may occur in certain parts of the skeleton. They are typically painless but are usually visible on X-rays and scans. Optic Nerve Swelling Swelling of the optic nerve, the main nerve in the eye (known as Papilloedema). Fluid Build Up Fluid build-up around the lungs, in the abdomen and/or the legs. High Cells High red blood cell levels and/or high platelet levels in the blood. Cytokine Raised levels of a cytokine (chemical messenger) in the body known as Vascular Endothelial Growth Factor (VEGF). VEGF is one of the more common impacts of POEMS and occurs in most patients. Castleman Disease Castleman Disease is a type of Lymph Node disorder that can range in severity and causes a range of symptoms, including swollen Lymph Nodes (neck, armpit, groin, chest, abdomen), fatigue, fever, night sweats, weight loss, rash, shortness of breath, enlarged liver/spleen. Depending on the type of Castleman Disease, treatment can include removal of the impacted node, or a customised drug based treatment plan. Also Known As POEMS syndrome can also be known as Osteosclerotic Myeloma Takatsuki Syndrome Crow-Fukase Syndrome However, these terms are increasingly less commonly used. What is a Monoclonal Plasma Cell Disorder? A Plasma Cell disorder is the term used to describe a condition which produces abnormal Plasma Cells. Plasma cells are a type of white blood cell that produce antibodies (immunoglobulins). Antibodies bind to substances in the body that are recognised as foreign, such as bacteria and viruses (known as antigens), enabling other cells of the immune system to destroy and remove them. In Monoclonal Plasma Cell Disorders, large numbers of identical Plasma Cells are produced. These cells produce an abnormal antibody known as Paraprotein (also called Monoclonal or M protein ) which has no useful function. In POEMS syndrome, the abnormal Plasma Cells may be located in one or more specific areas of the Bone Marrow (termed ‘Plasmacytomas’), or may be present throughout the Bone Marrow. The number of abnormal Plasma Cells in the bone marrow is generally small, and M Protein levels are also generally low. Causes and Symptoms of POEMS? What causes POEMS? We know it's frustrating to read - but the simplest answer is we don't fully know yet. The exact causes of POEMS syndrome are not well understood. The Paraprotein (see the previous section and Monoclonal Plasma Cell Disorder ) produced by the Abnormal Plasma Cells is not enough to explain the many features and impacts of POEMS. Various Cytokines are thought to play a role in causing damage to the different tissues and organs involved in the syndrome. This includes the Cytokine VEGF that is found in higher levels in POEMS syndrome patients. Who can develop POEMS syndrome How many people get it? POEMS syndrome is very rare, so rare in fact that we don't even know the incidence level. We normally say MMN (another of the conditions we support) impacts 0.6 people per 100,000, or CIDP impacts 1-2 per 100,000. With POEMs, we don't have that data available. However, it is thought many more cases remain unrecognised and undiagnosed. This is due to the rarity, the wide range of signs and symptoms, and the fact that patients may be seen by different doctors who are unfamiliar with the syndrome. That means the overall numbers may be higher. Average age? The average age of diagnosis is in people in their 50s, however this can range from 30–80 years old. Gender? POEMS syndrome is more common in men than in women. Symptoms The most common symptoms result from the Peripheral Neuropathy associated with the syndrome. Peripheral Neuropathy is often the most debilitating feature of POEMS syndrome. The first signs of Peripheral Neuropathy include numbness and tingling in the hands and feet which progressively worsens over time. Pain, discomfort, and weakness may accompany this, and are common features of POEMS. Weakness is often an early symptom. Other symptoms vary depending on the organ systems involved and can include: Weight loss Diarrhoea Enlargement of the Lymph Glands (also known as Lymph Nodes) Fluid build-up in the feet and ankles Increased sweating Skin changes, including: thickening of the skin Red or purple spots on the surface on the skin An increasing amount of hair on the arms and legs which is often coarse in texture Swelling of the fingertips and white nails (known as ‘clubbing’) Breathlessness Fatigue Headaches or blurred vision Reduced sexual function (reduced libido, loss of erections) Patient may also be at increased risk of Deep Vein Thrombosis (blood clots in the deep veins of the body, typically the legs). Patients may have fewer symptoms at diagnosis but develop more symptoms over time as the syndrome progresses. How is POEMS syndrome diagnosed? It's important to remember that not all of the criteria referred to in the name “POEMS” (Polyneuropathy, Organomegaly, Endocrinopathy, Monoclonal plasma cell disorder and Skin changes) are always present. POEMS syndrome may be diagnosed if the patient has all of the following: Polyneuropathy Monoclonal plasma cell disorder One or more of the other “major criteria” of the POEMS syndrome (sclerotic bone lesions, raised VEGF and Castleman disease) One or more of the other criteria (such as hormone changes or skin changes). (for more information on these criteria, see the What Is POEMS section of this info hub). To confirm a diagnosis, your doctor will need to perform a thorough physical examination where they will look for the following: Skin and hair changes Do you have hyperpigmentation (darkened skin), thickened or hardened skin, excess hair growth (or loss), redness or unusual skin texture. They may also look for changes to your nails. You may be asked when the changes started, and if they are progressing (get worse/more noticeable), and if there is itching or pain in the impacted areas. Evidence of fluid build-up Your doctor will likely be looking at three key areas. Your lungs - they will likely listen to your chest with a stethoscope to monitor for fluid build up in your lungs Lower limbs - They will pay close attention to your ankles, lower legs, and feet. Abdomen - They will examine your stomach area, like your lower limbs, this may involve gentle pressing or manipulation of the area. If you feel any pain during this, it should be mentioned to the doctor. Enlargement of specific glands and organs such as lymph glands, liver and/or the spleen This will likely be through a hands-on examination. The doctor will exam/feel the lymph nodes in the neck, armpits, and in some cases groin. Remember, as with any physical examination, you can ask for a trusted partner, family member, friend, or care giver to accompany you for support. By manipulating your stomach/abdomen, they can also get a rough idea if your liver or spleen is enlarged. You may be asked about unexplained weight loss or gain, and feeling unusually full or uncomfortable. Signs of optic nerve swelling To examine your eyes, your doctor will likely perform an Ophthalmoscopy - or simply put, they will look in your eyes with a handheld light. This can be a little uncomfortable, but think of it like a trip to the optician. Signs of neuropathy by conducting a complete examination of the nervous system There are a number of tests a doctor may carry out immediately: motor testing (checking the strength and movement of your arms and legs) sensory testing (light touch, pin prick, in some cases hot and cold tests) reflexes (knee, ankle) gait and balance (walking normally, heel-to-toe walking) But they may also request specialist tests such as Neve Conduction Studies (measuring how fast an electrical pulse travels through your nerves) and EMGs (fine needle electrodes inserted directly into muscle tissue to measure activity at rest and during contraction). Most people in the Inflammatory Neuropathies community will, at some stage, undergo a Nerve Conduction Study as part of their diagnosis. If you have any concerns about these or EMGs, please join our Facebook group (GBS/CIDP/MMN/Inflammatory Neuropathies UK Community) where you can talk to people who have experienced it first hand. Along with the physical exam, your doctor will also administer a blood test Checking for: Your levels of white blood cells, red blood cells and Platelets Your liver and kidney function, and function of your Endocrine Glands If Paraprotein is present The level of certain Cytokines including VEGF And may also request are urine test ..for the presence of part of the Paraprotein called Light Chains (also sometimes called Bence Jones Protein) And X-rays and scans ..to look for abnormal bone growth or bone damage Biopsies and other tests A bone marrow biopsy, or a biopsy of any individual bone lesions (plasmacytomas) identified on scans, may be performed to look for the presence of abnormal plasma cells As previously mentioned, A Nerve Conduction Study may be performed to assess nerve function and damage A lumbar puncture may be performed to look for high levels of protein in the spinal fluid We know all this seems like a lot, but please keep in mind that the sooner treatment is started, the better the outcome. How is POEMS treated? It is important that treatment is started as soon as possible, because progression of the condition is rapid without treatment and can be fatal. Treatment improves symptoms but may not cure the underlying condition. This means that while you may still be living with POEMS, you may find the symptoms themselves are not as prominent. Treatment of POEMS syndrome will depend on several factors: Whether the underlying Plasma Cell Disorder is widespread in the bone marrow, or at a specific location (a Plasmacytoma) The main symptoms present and organs affected Age and general fitness of the patient Treatment may include chemotherapy and/or radiotherapy. Some patients will be given stem cell transplantation. The treatments are similar to those used in other plasma cell conditions, including Solitary Plasmacytoma and Myeloma. Let's break down the treatment methods in some more detail: Radiotherapy You will typically receive Radiotherapy treatment if you have an abnormal bone growth in just one or two areas of the bone, but no evidence of abnormal Plasma Cells spread throughout your Bone Marrow. You will be assessed by a Radiotherapy specialist who will decide on the exact amount and number of treatments needed. You may be given drug treatment in addition to Radiotherapy. Stem Cell Transplantation You may be considered for High-Dose Therapy and Stem cell Transplantation (HDT-SCT) if the abnormal Plasma Cells are widely spread throughout your Bone Marrow, and if your age and fitness make this suitable for you. You will be given high dose Chemotherapy (often Melphalan) before the Stem Cell Transplant, and additional drug treatments before or afterwards. A reaction called “Engraftment Syndrome” can occur after HDT-SCT, with symptoms such as fever, weight gain and skin symptoms, and is treated with steroids. Drug treatment If the abnormal Plasma Cells are more widely spread throughout your Bone Marrow, and you are not able to undergo HDT-SCT, it is likely that you will receive a combination of different types of drugs which work together. The most common types of drugs used to treat POEMS syndrome are: An alkylating agent which is a type of chemotherapy drug A steroid These drugs may also be combined with drugs used to treat the underlying Plasma Cell Disorder. The choice of treatment and dose will take into account side effects which can be problematic in POEMS syndrome (including neuropathy and increased risk of thrombosis). Treatment is effective in the majority of patients, but improvement is normally gradual. Once there is evidence of an improvement in symptoms, quality of life and day-to-day functioning, it is recommended that patients are referred for a period of rehabilitation, preferably at a specialist rehabilitation centre, to allow nerve and muscle function to improve. Nerve pain is common in POEMS syndrome and is often treated with drugs. Pain caused by nerve damage can be difficult to treat or manage and may require input from a pain specialist or palliative care. A note on drug names: due to restrictions around Google Ads and Search Engine Placement, we can't list all the brand names of the drugs you may be offered. Your doctor can go into more detail but if you'd like to know more, please email us and we can the names directly. How is POEMS monitored? POEMS syndrome patients should be monitored regularly and the type of treatment you receive will determine the frequency of hospital visits. After initial treatments are complete, patients are seen regularly for physical examinations and blood tests. Patients are likely to receive other ongoing assessments such as Nerve Conduction Tests and scans. If you ever have concerns between appointments, contact your consultant straight away. Relapse In the event of relapse, patients generally do well after further treatment. Outlook With treatment , the outlook for patients with POEMS syndrome has improved greatly in the last few years. In a study of 100 POEMS patients in the UK, the 10-year survival was 82% (or 82 in 100 patients). POEMS Advice for Carers Diagnosis of a rare and chronic condition can bring mixed emotions. On one hand, it's quite normal to feel relieved to have an answer. On the other, learning someone important to you has a life-long illness can be daunting. Especially if you will be acting in the role of carer.* On this page we have some practical suggestions that can help you in this new role, and some help contact details and/or resources you may wish to access. Quick Fact: Informal/Unpaid Carer The Department of Health and Social Care has described an informal/unpaid carer as: “… someone who provides unpaid help to a friend or family member needing support, perhaps due to illness, older age, disability, a mental health condition or an addiction”. This means, even if your loved one only needs a hand during a spike of their symptoms, or a lift to hospital for treatment, you're acting as a carer. These options may not be applicable to your or your loved one, but it's useful to know that help is available. Ask for a needs assessment for the person you’re caring for You need this before the council can recommend services such as equipment, home adaptations, help from a paid carer, etc. Get a carer's assessment This can be requested at the same time as a needs assessment, via social services at your local council. Don’t be afraid to ask for help Ask family and friends (shopping, respite, etc), and contact carers’ organisations or Citizens Advice for benefits advice and other support. Look after yourself Eat a healthy diet, maintain a regular sleep pattern and make time for exercise, preferably in the fresh air or at your local gym or pool, away from the care setting. Remember to rest Put some activities on hold. Take some time for yourself by arranging respite care from a friend or relative, or through social services. Recognise limitations Both those of the person you’re caring for and your own. Let them try to do things for themselves if they are able, but bear in mind their safety and yours. Look after your mental health Talk to each other about your experiences and frustrations during illness and recovery. Talk to your GP if either of you is struggling. Be mindful of risks Be aware of risk of falls due to poor balance, and dropping or spilling things due to weakness. Diet and exercise If you or the person your caring for has symptoms around the abdomen, it may be uncomfortable eating or drinking too much. Similarly, certain treatments - particularly chemotherapy as part of Stem Cell Transplantation - can have a significant impact on appetite along with side effects like nausea. You may receive advice from a dietitian, or you can ask to speak to someone if not. Some find meal replacement drinks/shakes useful as a quick way to absorb calories and nutrients during treatment. Bone growth, along with neuropathy, can cause difficulties exercising. Speak to your consultant first for their recommendations. However, many in the Inflammatory Neuropathies community enjoy swimming as a low impact way to exercise. Don't lose sight of your relationship Whatever your relationship is to the person you’re caring for, make time for it. Do things together that you both enjoy and that feel ‘normal’. Get in touch with Inflammatory Neuropathies UK We provide information and support, organise peer support via phone or video link, virtual group chats, and run an active and supportive Facebook group. Other sources of support Looking after someone you love doesn’t have to mean struggling alone. There are organisations out there who offer advice and practical support to carers, so reach out and see what help is available to you. NHS advice Carers UK Carers Scotland Carers Wales Carers Northern Ireland Family Carers Ireland Carers Trust Help for young carers Citizens Advice UK Citizens Information RoI Find your local social services England Scotland Wales Northern Ireland Republic of Ireland Mental Health, Well-Being, and Work following POEMS diagnosis This section will provide useful links and sources to help support your mental health during POEMS. 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 POEMS 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 POEMS 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 POEMS - 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. As referenced above, once initial treatment is complete, you will still have regular check-ups with your consultant to monitor for signs of relapse or return. Along with that, we can share some additional post diagnosis/treatment advice. Support and Rehabilitation Financial Help General Prognosis Pregnancy Physiotherapy Hygiene, Cleanliness and Teeth Diet 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 POEMS 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: If you're experiencing or have experienced any communication and swallowing problems (possibly due to the impact of treatments like Chemotherapy), the therapist can help you with that. Counsellor or Psychologist: someone you can discuss your problems with and help you find ways to cope emotionally Financial Help Financial concerns may be causing anxiety, especially if you are the main wage-earner and unable to work. If you are employed, stay in regular contact with employers and make sure you understand the absence and returning to work processes. Inflammatory Neuropathies UK may be able to help with the cost of frequent journeys to visit a family member in hospital. Get in touch and ask about our Personal Grants Scheme . Once you leave hospital, or if you are already receiving treatment as an outpatient, you could be entitled to benefits to help you support yourself and your family. The benefits system is complex and subject to change, but Citizens Advice has up-to-date information on their website, and they can even help you make an application for benefits such as Personal Independence Payment (PIP) or Universal Credit: www.citizensadvice.org.uk Further information on benefits can be found at: www.gov.uk/browse/benefits If adaptations to your home are needed, such as installing a ramp or downstairs bathroom for example, it is worth contacting your local council to see if you are entitled to help via a Disabled Facilities Grant: England and Wales Scotland Northern Ireland Republic of Ireland If you are on a low income, or someone in your household is severely and permanently disabled, you may be entitled to a reduction in Council Tax. Further information is available an Carers UK. General Prognosis With treatment, the outlook for patients with POEMS syndrome has improved greatly in the last few years. In a study of 100 POEMS patients in the UK, the 10-year survival was 82% - or 82 in 100 patients) Pregnancy With a wide range of treatment types, please talk to your consultant about trying to get pregnant. You need to allow Chemotherapy to completely exit your system, how long that takes can depend on the drug, dose, and person. It's important to talk to a doctor before trying to have a baby during, or soon after, treatment. 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 : 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 Exercise Pain

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

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

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

About the Strategy of Inflammatory Neuropathies UK anout Guillain-Barre Sundrome GBS CIDP MMN Strategy Inflammatory Neuropathies UK is an aspirational and developing organisation. At the heart of what we do are people, and our strategy and approach has our community at it's centre. We believe in transparency, so are happy to share our organisational strategy, and what we, as a charity, are seeking to achieve. Our Strategy Our full Organisational Strategy can be seen and downloaded by clicking on the link Below. IN Action: Organisational Strategy 25-35 Our current full strategy. This document provides the detail of our plans for the next 10 years Our current strategy snapshot can be read by clicking on the link below, or by scrolling to the bottom of the page where you can read it. Driving Impact for the Inflammatory Neuropathies Community: Strategy Snapshot 25-35 The current summary of our full strategy. This document outlines our plans for the next 10 years

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,

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

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

Become a Trustee We’re looking for a new Trustee, and we’d love to hear from you. At Inflammatory Neuropathies UK, we support people living with rare, life-changing conditions like Guillain-Barré Syndrome, CIDP, and MMN. These are hard hitting conditions that impact people and families across the UK. That’s why this role matters. We’re looking for a new Trustee to join our Board. You don’t need to be a “Professional Trustee”. We want someone who understands, thinks clearly, and is willing to speak up. We’re especially interested to hear from you if you’ve got experience in: Health and social care Retail (especially customer insight or income generation) Compliance and governance Learning and development You don’t need all of these (or any if you have other skills), we just want to know what you can offer us and our community. What you’d be doing It's simple, we need you to help us make good decisions. That means shaping direction, keeping us on track, asking the right questions, and supporting the team to do their best work. What’s involved A monthly online one hour meeting An annual AGM and meeting in person A few other meetings as required All in, around 30–40 hours a year What we offer It’s a voluntary role, but your expenses will be covered. While we can’t offer financial gain, we can offer support, mentoring, development opportunities, and the chance to be part of an amazing community. Who are we looking for Someone who’s already a Trustee Someone thinking, “I could do that, I just haven’t yet” Lived experience of these conditions (personally or through someone close) is really welcome, but it isn’t essential. Why you? Because this is one of those roles where your input genuinely changes things. You’ll help shape support, services, and research for people who really need it. This won’t be from a distance, but in ways that impact on real lives. It’s also a really good opportunity to build skills, get Board experience, and get a highlight on your CV. How to apply If this kind of role excites you, then send in your CV and a supporting statement to rich@inflammatoryneuropathies.uk . The statement needs to: Outline why you want to be a Trustee with Inflammatory Neuropathies UK Tell us what you would bring to the Board The closing date for applications is 31st May 2026 If you want more information, want an informal chat, or are intrigued but want to know more, then email Rich Collins at rich@inflammatoryneuropathies.uk Make a difference. Be our next Trustee Read the Trustee Role Description Read our Trustee Recruitment Policy and Procedure

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