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Support after meningitis Free UK-wide support services for people of all ages affected by meningitis.

Contact the nurse-led Helpline for support on 0808 80 10 388 | Helpline@meningitisnow.org

Support following meningitis We understand how tough life after meningitis can be. With over 40 years of experience, Meningitis Now is leading the way in meningitis aftercare and support – offering an unrivalled range of information and support services. We are here to provide emotional, practical and financial support for everyone in the UK who has been affected by meningitis. Whatever life after meningitis throws at you, we’re here to support you as you face the future with confidence and hope.

No matter where you are in your meningitis journey, we are here to support you Nurse-led Helpline If you’ve experienced meningitis, it might be difficult to know where to turn. Our nurse-led Helpline is here to provide emotional support, answer questions and explain more about the disease and the support that Meningitis Now can offer. You can access the freephone Helpline by phone, email or social media at any time.

We can offer: •

A listening ear from a registered nurse

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The opportunity to talk through any concerns, following an experience with meningitis

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Answers to your questions about meningitis and its after-effects

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A first point of contact if you are seeking emotional or financial support after a bereavement

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Referrals to our community support team for ongoing support

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Information and guidance on applying to our financial support programme

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Information about meningitis vaccines

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Signposting to other services, such as volunteering and fundraising

The nurses at Meningitis Now were absolutely incredible. They took the time to listen and talk things through. They reminded me that recovery can take time, even when it doesn’t feel like it will ever end.

Contact the nurse-led Helpline on 0808 80 10 388 Email: helpline@meningitisnow.org (9am-4pm Monday - Thursday and 9am-1pm Friday) Contact the nurse-led Helpline for support on 0808 80 10 388 | Helpline@meningitisnow.org

Community Support Officers (CSOs) CSOs are based across the UK, offering a listening ear, alongside a wealth of knowledge and experience. Support is available in a way that suits you – whether that’s by phone, email, video call or through a home visit. Whatever your experience of meningitis, your CSO can provide support for as long as needed. We are committed to making our support visits and contacts accessible and can arrange support for additional needs, such as sign language interpreters or language translation services. CSOs can help by: •

Providing emotional support

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Answering questions about meningitis and its after-effects

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Helping you access our financial support

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Supporting schools or employers to understand how meningitis may affect learning, wellbeing, or your ability to work

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Signposting you to other specialist organisations when needed

Support events Our range of support events, delivered across the UK and online, are designed to bring people together. They offer individuals and families affected by meningitis the opportunity to connect with others who understand how life can be changed by meningitis. These events provide a safe and supportive space to share experiences, build connections, and feel less alone.

Whatever life after meningitis throws at you, Meningitis Now is here to help you face the future with hope and confidence.

Regional connection opportunities These events are for anyone impacted by meningitis – either directly or indirectly. Led by our community support team, they are delivered in community spaces across the UK. You can: •

Meet and talk with others who understand your journey

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Take part in a range of activities

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Learn more about the support available from Meningitis Now

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Connect with our nurse-led Helpline team

Family Days Family Days are all about families affected by meningitis having fun, relaxing and spending time together. Held at family-friendly venues across the UK, these days are open to families with personal experience of meningitis, with activities suitable for children up to 16 years of age. Whether you spend the day at a zoo, castle, museum, or wildlife park, Family Days give children the chance to simply be children, while parents can connect with other families who understand the challenges life after meningitis can bring.

Contact the nurse-led Helpline for support on 0808 80 10 388 | Helpline@meningitisnow.org

Forever Weekends Losing a loved one to meningitis is one of the hardest things you’ll ever have to face. Meningitis Now is here to help support you for as long as you need it. Forever Weekends offer a supportive space to remember and talk about your loved one. You can take part in sessions to help you through your bereavement journey, meet others with similar experiences, build connections and feel less isolated – no matter how much time has passed.

It gave me a real sense of validation of my feelings. The whole weekend was so valuable. A chance to connect with other families and the team in lovely surroundings where we felt looked after. Excellent presentations and talks from all involved. Allowed me time to focus on my grief journey and to hear from others who have experienced loss.

Whatever life after meningitis throws at you, Meningitis Now is here to help you face the future with hope and confidence.

Support learning events It’s not always possible for people affected by meningitis to attend support events in person. Our online ‘Keep Connected’ workshops cover a wide range of topics that are important for navigating life after meningitis. Join us online to connect with others in a similar situation, access information and guidance, and ask questions in a safe and supportive environment. These virtual events are designed to make support more accessible and help reduce feelings of isolation. Topics have included: •

Meningitis and mental health

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Meningitis and hidden after-effects

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Bereavement

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Reasonable adjustments in the workplace

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Understanding childhood acquired brain injury (ABI)

I felt connected, and it was good to speak with people who understand.

Contact the nurse-led Helpline for support on 0808 80 10 388 | Helpline@meningitisnow.org

Peer support groups No-one understands what you’re going through like people who’ve been through it too. Our online peer support groups can connect you with other people facing life after meningitis. All groups are free to access. We offer a Facebook Peer Support group and a Facebook Bereavement Support group. These closed and moderated Facebook groups are safe places where you can post stories, ask questions and share your experiences with other people who understand. These groups can help you: •

Feel less isolated

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Connect with a community of people with similar or shared experiences

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Learn more about meningitis and its impact

Peer

Bereavement

Support Group

Whatever life after meningitis throws at you, Meningitis Now is here to help you face the future with hope and confidence.

Men’s support group The Meningitis Now Men’s Support Group was the brainchild of two of our male volunteers who realised how helpful they found talking to each other about their invisible meningitis after-effects. The mutual understanding and support was so powerful they came up with the idea of a group run by men, for any man impacted by meningitis. It has expanded to include not only men who have had the disease, but also men bereaved by meningitis or in a caring role. It offers a supportive and understanding environment for any man whose life has been affected by meningitis.

Contact the nurse-led Helpline for support on 0808 80 10 388 | Helpline@meningitisnow.org

Rebuilding Futures Fund: financial support after meningitis Our financial support helps people to rebuild their futures with hope and confidence across four key areas:

Health & wellbeing To improve the emotional wellbeing of those affected by meningitis and their families. We can offer funding towards things like: •

Counselling and emotional wellbeing therapies

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Creative therapies, such as play, art, or music therapy

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Complementary therapies, such as acupuncture, cranial sacral therapy, or cranial osteopathy

Specialist equipment To enhance the quality of life for those living with the effects of meningitis through specialist and practical equipment. We can offer funding towards things like: •

Specialist bikes and trikes

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Mobility aids

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Sensory toys

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Home adaptations

This is amazing news that I have been awarded funds for counselling, thank you so much. This will be a huge help and I know will make a big difference in my life.

Whatever life after meningitis throws at you, Meningitis Now is here to help you face the future with hope and confidence.

Bereavement To help families with unexpected financial burden and the emotional impact of bereavement and grief. We can offer funding towards things like: •

Funeral costs

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Headstones and memorials, such as benches, seats, trees, or garden items

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Bereavement support, such as counselling or art therapy

Opportunities We provide help towards educational development and retraining. We can offer funding towards things like: •

Books or equipment to support a training course

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Technology to support learning

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Tuition and re-training costs

Having my wheelchair has given me my independence back. I feel like I am my own person again and have started a new chapter of my recovery. I have been given a second chance. You have all helped me beyond belief. I can now take my son to school and be completely independent rather than relying on others to help me.

Contact the nurse-led Helpline for support on 0808 80 10 388 | Helpline@meningitisnow.org

Believe & Achieve: support for young people Believe & Achieve is our programme of support for young people aged 11 to 25 who have been directly or indirectly impacted by meningitis. Believe & Achieve encourages young people to think about where they are in life – helping them set and achieve goals, overcome challenges, make new friends, learn new skills, celebrate successes and give them confidence to believe in themselves. Believe & Achieve isn’t a one-size-fits-all service – it’s very much about individual young people and what they want. Some of the activities and support include:

Events Young people are encouraged to challenge themselves, have fun, and meet others in a supportive environment. Previous events have included cookery days, online social activities, creative workshops, and residential weekends.

Peer mentors Young people can share their stories and experiences at events, and support others through peer mentoring, including panel discussions and media opportunities.

Online community We facilitate a social media community where young people can share stories, advice, and encouragement.

Coaching and counselling Access to coaching and counselling may be available where appropriate. We create incredible communities through Believe & Achieve – the opportunity for young people to meet others affected by meningitis can be life-changing. Amazing things happen when our Believe & Achievers come together.

Whatever life after meningitis throws at you, Meningitis Now is here to help you face the future with hope and confidence.

Today I was able to meet new people who understood what I was feeling and thinking. Living with the aftereffects of meningitis is an uphill journey, and being able to talk to people my own age who understand was a really big thing for me.

Believe & Achieve is my meningitis family, who are always there to support everyone involved.

Contact the nurse-led Helpline for support on 0808 80 10 388 | Helpline@meningitisnow.org

Volunteering Volunteering is vital to what we do at Meningitis Now. Our volunteers are the voice of our organisation in communities across the UK, helping to raise awareness of meningitis and directing those affected towards support. Every signs and symptoms card shared, every talk delivered to a school, university or community group, and every conversation about meningitis has the potential to save a life. Join us as a volunteer – you can make a difference. You can: • • • • •

Run an awareness stand Share our social media messages Take part in fundraising activities Deliver official meningitis awareness talks Support media and press requests

In January 2000, our youngest daughter contracted meningococcal meningitis and septicaemia. Meningitis Now supported us through her illness and recovery. Since then, I’ve volunteered with the charity, raising awareness through talks and events. Since retiring, I’ve also volunteered weekly at the head office, helping with awareness materials and supporting the team.

Why not join us? How to become a volunteer

Whatever life after meningitis throws at you, Meningitis Now is here to help you face the future with hope and confidence.

Lived experienced groups Our supporters help amplify the voice of Meningitis Now. They increase awareness of meningitis, highlight our campaigns – and support our vision of a future where no one in the UK loses their life to meningitis, and everyone affected receives the support they need to rebuild their lives. We recognise that many of our supporters, donors, fundraisers and staff have lived experience of meningitis. We want to work in collaboration with them to ensure our services continue to reflect real needs and experiences. People with lived experience may get involved in areas such as staff recruitment, campaigns, media opportunities, and focused working groups. Your insight and input are highly valued and make a meaningful difference. To find out more about how you can use your lived experience of meningitis, please get in touch with the volunteer team at volunteerdevelopment@meningitisnow.org

Fundraising We rely on your energy, enthusiasm and imagination to raise the funds we need to carry out our lifesaving and life-changing research, awareness and support work. There are many ways you can help. Help us make a difference today: •

Play our weekly lottery – a fun way to give regularly

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Join one of our planned events

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Set up a Direct Debit – steady support that helps us plan ahead

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Give through Payroll Giving – an easy, tax efficient way to donate

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Take on a new challenge and help us raise funds to fight meningitis

Find out more ways you can support us: www.meningitisnow.org/support-us/donate/

Contact the nurse-led Helpline for support on 0808 80 10 388 | Helpline@meningitisnow.org

Meningitis Now is the UK’s leading meningitis charity, committed to the fight against meningitis. We save lives and rebuild futures by funding research, raising awareness and providing support for people whose lives have been affected by meningitis.

Contact us Phone: 01453 768000 Nurse-led Helpline: 0808 80 10 388 (9am-4pm Monday – Thursday & 9am-1pm Friday) Email: helpline@meningitisnow.org Social media: fb.com/meningitisnow @MeningitisNow @meningitis_now @meningitisnow @meningitis-now Meningitis Now Fern House Bath Road Stroud Gloucestershire GL5 3TJ Whatever life after meningitis throws at you, Meningitis Now is here to help you face the future with hope and confidence.