Reports from Inflammatory Neuropathies UK anout Guillain-Barre Sundrome GBS CIDP MMN Reports As a charity, we sometimes develop reports and undertake research based on what you tell us, or around themes that come up from our discussions with people. This is an area that we will be looking to develop further in the future, and as a result, we will be adding new reports as we develop them. Latest report Our latest report can be read by clicking on the link below, or by scrolling to the bottom of the page where you can read it. IN this together: Our Impact in 2025/26 Our latest Impact Report, outlining what the Charity has achieved in the last year Previous reports: Previous reports will be able to be found here Living with Inflammatory Neuropathies Our latest reports highlights the finding from the My Neuro Survey 2024/25

Newsletters One of the most important things we do as a charity is make sure we’re really connecting with you — our community. Every day, you put your trust in us. You open up about your worries, lean on us for support, share your stories, and generously give to our cause. That means the world to us, and as you're so open with us, it’s only right that we keep you fully in the loop about our activities and actions. With that in mind, we’ve got two newsletters we send out regularly to keep you posted on everything happening in the Inflammatory Neuropathies UK world. First up is our monthly IN brief - a quick, four-page snapshot that keeps you in the know about what we’re working on and what’s coming up. Then there’s our quarterly Lowdown - this is roughly twenty pages packed with updates, personal stories from our incredible supporters, and a real behind-the-scenes look at what’s been going on across the charity. If something’s happening at Inflammatory Neuropathies UK, you’ll hear about it there. You can find an archive of our older Updates and Lowdown's over on our previous GAIN website, and scroll down for the latest from Inflammatory Neuropathies UK. Newsletter Archive (GAIN) Previous editions: IN brief | June 25 | #1 IN brief | July 25 | #2 IN brief | August 25 | #3 IN brief | October 25 | #4 IN brief | November 25 #5 IN brief | January 26 | #6 IN brief | February 26 | #7 IN brief | April 26 | #8 INdepth | May 25 | #1 INdepth | September 25 | #2 INdepth | December 25 | #3 INdepth | March 26 | #4 Our latest newsletter can be enjoyed below, or downloaded by clicking here

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

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

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

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.

Organisations we're part of No charity is an island. We’re proud to be part of a number of alliances and networks that work together toward a more equitable world for the people we support. You may find what they do useful, click on their logos to learn more.

Events APRIL 12 (2026) Brighton Marathon Weekend Claim a Free Place MAY 3 (2026) AJ Bell Great Birmingham Run - 10k Claim a Free Place OCTOBER 4 (2026) AJ Bell Great Scottish Run - Half Marathon Claim a Free Place Brighton Marathon Weekend Always a firm favourite in our community, and the running community in general - it's the Brighton Marathon Weekend! It's the UK's third-largest marathon, and we've only gone and got a few free runner places in it! To claim them? Just email us and agree to raise funds.. simple (and you've got to run a marathon, so not entirely simple, but we believe in you!). You'll get a finishers shirt and medal, photos, results, access to training and tracking apps and much more. There'll also be pacers available if you've a time goal in mind from 3:00 to 7:00 hours, bag drop, plenty of toilets and drinks, and much more. Sound like a good day out? Contact: hello@inflammatoryneuropathies.uk Great Birmingham Run 10k The AJ Bell Great Birmingham Run is the Midlands’ biggest and best running event. Thousands of Brummies pound the streets every year to rise to the challenge of the Birmingham 10K. Starting & finishing in the heart of the city, soak up the incredible atmosphere, high-five your way along the course, experience your finish line moment and bask in the glory of your achievement. 2025's event was a complete sell-out, so get in early to secure your place on the start line and bag yourself a saving in the process! Be Your Greatest in 2026 – Enter now and lock in your start line spot today! Sound like a good day out? Contact: hello@inflammatoryneuropathies.uk Great Scottish Run - Half With a city centre start and finish, the AJ Bell Great Scottish Run is a celebration of everything that is great about Glasgow: inspiring urban architecture, green spaces, history, music, strength, spirit and, of course, great people, personality and humour. Thousands take part each year to challenge themselves and to raise money for good causes. And Scotland’s friendliest city always delivers on the support front too, with crowds of locals turning out each year to cheer and high-five from beginning to end. Plus, there are medals, finisher t-shirts and bragging rights for all! Sound like a good day out? Contact: hello@inflammatoryneuropathies.uk

Health Emotional Support Read More Physio (coming soon) Read More Diet Read More Emotional Health Support There is no question that our physical health and our mental health are inextricably linked. Therefore, it follows that anyone with an Inflammatory Neuropathy is probably going through emotional challenges as well - and these can affect work, relationships, our sense of who we are and our wellbeing. In conjunction with Rareminds, we offer a free emotional support service which is available to anyone who is over 18 and has been impacted by an Inflammatory Neuropathy. The service provides a safe and confidential space to talk through issues such as anxiety, low mood, isolation, unpredictable symptoms, or adjusting to life with a chronic condition. Up to 12 confidential sessions may be taken up, by video or phone, with both daytime and evening appointments available. The service is led by Dr. Stephanie Yin, a psychotherapist and psychologist with professional and lived experience of rare conditions, along with other members of the Rareminds team who have undertaken additional training on Counselling for Rare Diseases. To arrange an initial consultation, email stephanie@rareminds.org , using the subject line “The Inflammatory Neuropathies UK Counselling Service.” We know talking about mental health can be difficult and, for some, acknowledging that you could do with a chat can be a big step. But, as this is a confidential service, we do not have access to your details. Your time and conversations with Stephanie or Poppy are entirely private. If you feel you, or someone you know, could use counselling around living with an Inflammatory Neuropathy, get in touch with Stephanie. Physio After announcing our Emotional Support service to support mental health, Inflammatory Neuropathies UK's next goal is to support physical health. Please check back for more information on our future physio services. Diet A great place to start learning about what to eat is through the NHS Eatwell Guide . It shows how much of what we eat should come from each food group to achieve a healthy, balanced diet. Importantly, it applies to most of us regardless of dietary preferences, weights, ages, and ethnic origins. Please note, if you’re someone with special dietary requirements or medical needs, you may wish to chat with a registered dietitian to ensure the guide fits your needs. Two things to keep in mind though. Don’t let perfect be the enemy of good. We know recovering from GBS or living with a chronic condition can bring mental challenges along with physical symptoms. While we encourage you to cut down on sugar and eat your five fruits and vegetables a day, remember to allow a treat here and there. Don’t beat yourself up if you don’t get the nutritional balance right with every meal, just try and balance it out through the week. Don’t be afraid or embarrassed to ask for help. The cost of living has impacted all of us, and for those living with conditions that can impact their ability to work, this can cause significant strain. Citizens Advice have produced some helpful pages that cover accessing foodbanks, along with crisis grants and benefits, and more. Click the link closest to your region to learn more. England Scotland Wales Northern Ireland The EatWell Guide The guide Try to eat your 5 fruits and vegetables a day but remember fruit juice should be limited to 150ml (about 5.07 oz) a day to avoid too much sugar. Sugar is not needed in our diet, so should be eaten less often and in smaller amounts. A sweet treat is still allowed though! Remember to drink 6-8 glasses of fluid a day. Water, low-fat milks, low-sugar/sugar free drinks, along with tea and coffee all count. Starchy, fibrous food should make up over a third of what we eat – think high fibre or wholegrain varieties of pasta and bread. Add protein to your diet through fish (aim at least two portions of fish a week, one of which being an oily fish such as salmon, sardines or mackerel – you’ll get a lot of Omega 3 from these which helps reduce inflammation) or lean cuts of meat and mince while cutting down on red and processed meat. Don’t eat meat? No problem, think pules such as beans, peas, and lentils. They’re low in fat and help your fibre goals. Another great source of protein is dairy, or dairy alternatives such as soya. Milk, cheese, yogurt and fromage frais provide protein and are a strong source of calcium. Cook with vegetable, rapeseed, olive, and sunflower oils, these are unsaturated fats and therefore healthier. Though they should still be eaten in small amounts as they are high in energy (calories). Speaking of calories, women should have around 2,000 calories a day, and men should have around 2,500. However, this varies from person to person and can depend on how active you are. Apps like MyFitnessPal can help you track calories through the day and can serve as a food diary. When you’re not feeling great, you may find yourself more sensitive to certain foods. Being able to identify what does not agree with you through a diary may be beneficial for you.

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

IN contact Our details Telephone (9am to 4pm Monday to Friday) Office 01529 469910 Freephone helpline (9am to 4pm Monday to Friday) 0800 374803 UK 1800 806152 ROI WhatsApp or Text 07878 090965 Email hello@inflammatoryneuropathies.uk Address Inflammatory Neuropathies UK 3 Mill House Carre Street Sleaford | Lincolnshire NG34 7TW As a listening organisation, we love hearing from people. Please feel free to reach out to us at any time whether it's about a particular service, question about conditions, or you just need to chat to someone who understands. If we can't take your call, please leave a message and we'll get back to you asap. Please note, we cannot offer medical advice so if you require medical guidance, please contact your GP or other healthcare professional. Your details Your question or comment First name Last name Phone Email Multi-line address Country/Region Address City Zip / Postal code How do you want to get involved? Choose as many as you like Peer Support (Talking to other people about your experience) Local Get Together Coordinator (Facilitating a local group) Local Champion (Talking to local clinicians, and people impacted by conditions) Online Champion (Supporting people impacted on online forums and meetings) Raising Awareness Research Support Other Contact consent We would like to use your contact details to communicate with you with news and information about Guillain Barré & Associated Inflammatory Neuropathies and ways to support us. Please choose how you would like us to contact you. Email Phone Post SMS Text Help fight spam - what day of the week follows Monday?* Monday Tuesday Wednesday Thursday Friday

Podcasts Podcasts are a great way to get information, and to link in with the GBS and CIDP Community. We recently launched a new podcast series called IN all honesty, where Chief Executive Rich speaks to people with experience of GBS, CIDP, MMN, or another Inflammatory Neuropathy. It's an honest and open chat, with laughs, tears, and everything in-between. Guests include Carol Hooper (chair of Inflammatory Neuropathies UK), Clive Phillips (living with MMN and cycling 3,200km around France for awareness and fundraising), and Rory Coleman (athlete who has completed over 1,000 marathons, and over 200 since having GBS) Check it out by clicking the Spotify button. Or listen to Touching a Nerve with Rich and Al. Hosted by Rich Collins (Inflammatory Neuropathies UK CEO) and Al Bailey (former professional Rugby player diagnosed with CIDP), Touching a Nerve introduced our community to Lynn Rogers, a neuro science professor and endurance athlete who also happens to have CIDP. The duo also welcomed John Solosy who shared his experience of rowing 3,000 miles across the Atlantic for charity.