Support after meningitis booklet

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

Support following meningitis As a centre of expertise for aftercare and support with over 35 years’ experience, Meningitis Now knows how tough life after meningitis or meningococcal septicaemia* can be. You may be left facing a future without a loved one, coping with after-effects or dealing with the impact that meningitis has caused.

We offer an unrivalled range of information and support services for people of all ages. We are here to provide emotional, practical and financial support for everyone affected by meningitis in the UK, completely free of charge.

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

Meningitis Now’s support team

How to access support “Their support has been invaluable for my family. They made me feel like I wasn’t alone on this journey – I was given hope and understood. I often wonder how I would have coped without the support of Meningitis Now.”

If you’ve experienced meningitis it might be difficult to know where to turn. So it’s reassuring to know that our confidential, nurse-led Helpline is here to provide emotional support, answer your questions and explain more about the services that Meningitis Now can provide.

The Helpline is the gateway to Meningitis Now’s support and can be contacted on 0808 80 10 388 or helpline@meningitisnow.org

*Many medical experts now use the term sepsis instead of septicaemia.

Support for families

Support for adults

Support for young people

Bereavement support

Financial support

REBUILDING FUTURES FUND

Community support

Nurse-led Helpline

Community Support

Our confidential, nurse-led Helpline can help by:

Our Community Support Officers (CSOs) are based across the UK, offering a listening ear and wealth of knowledge and experience – either on the phone, email or as a home visit.

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Answering questions about meningitis and its after-effects Listening and talking through your concerns following an experience of meningitis Being the first point of contact if you’re seeking emotional or financial support following a bereavement Referring you to our Community Support team for ongoing support, and to other organisations who can help Giving you information and guidance on applying to our Rebuilding Futures Fund Providing information about meningitis vaccines

Whatever your meningitis experience, your CSO can offer support for as long as it’s needed: • • • • •

For more information or to access our support services, contact the Helpline on 0808 80 10 388 or email helpline@meningitisnow.org

“After speaking to the Meningitis Now Helpline, I’m feeling like there is hope for the first time.”

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Providing emotional support Answering questions about meningitis and its after-effects Helping you access financial support, including through Meningitis Now’s Rebuilding Futures Fund Helping your child’s school understand how meningitis can affect learning and well-being Helping your employer understand how meningitis can affect your ability to work Referring you to other specialist organisations who can help

“Meningitis Now has helped tremendously.

A support officer is in contact regularly and has helped me go on to access other services. I’m getting stronger and the future is beginning to look hopeful again.”

REBUILDING FUTURES FUND

Financial Support – Rebuilding Futures Fund Meningitis can be life-changing and leave you with unexpected financial pressures. Our Rebuilding Futures Fund is here to provide financial support for people of all ages affected by meningitis. The programme focuses on four separate areas.

“A brilliant learning pod which has hugely improved his quality of life. It has helped him to get out of the house and engaged loads of learning. It will continue to be of benefit long into the future.”

Health & well-being

Specialist equipment

Improving the emotional and physical well-being of those affected by meningitis and their families. We offer funding towards things like:

Helping to enhance the quality of life of those living with the effects of meningitis. We offer funding towards things like:

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Creative therapies e.g. play, music Complementary therapies e.g. acupuncture, reflexology Health and exercise e.g. swimming lessons, horse riding

Specialist bikes and trikes Mobility aids Specialist beds Sensory toys

Bereavement

Opportunities

Providing dedicated bereavement support, to help families with unexpected financial burden and the emotional impact of bereavement and grief. We offer funding towards things like:

Providing help towards educational development and retraining. We offer funding towards things like:

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Funeral contributions Memorials such as headstones, benches, plaques, trees etc.

Counselling

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Education support Technology to support learning such as laptops and iPads Tuition and re-training costs

Support Events

Keep Connected Online Events

We deliver a range of events throughout the UK, bringing people affected by meningitis together.

Our Keep Connected Online Support Events are for adults over the age of 18 years. To join these events, you will need access to an internet connection and a laptop, tablet or smartphone.

“These kinds of events are so helpful even if you’re not entirely sure what you’re going to get out of them! This session covered everything I needed to know about going into a job or internship as a person with disabilities/ health conditions/neurodivergence and I really appreciated hearing my rights from real lawyers! Looking forward to the next events.”

Family Days Our Family Days are all about families affected by meningitis having fun, relaxing and spending time together.

Whether you spend the day at the zoo, a castle, a museum or a wildlife park, Family Days give children the chance to be children and parents the chance to meet other families who understand how tough life after meningitis can be.

We deliver a wide range of themes and topics which are designed to help you get more informed, feel more confident to deal with the subject matter and connect with others with similar experiences. Each event includes discussion and questions with our support team and other experts.

Here are the types of themes and topics we cover: • • • • • •

Meningitis & mental health Meningitis & hidden after-effects (concentration & fatigue) Bereavement – continuing bonds Reasonable adjustments in the workplace Understanding childhood ABI (acquired brain injury) Education – your legal rights

We have worked alongside several organisations to deliver our events including CBIT (Child Brain Injury Trust), The Brain Charity, Irwin Mitchell Solicitors and Anthony Collins Solicitors.

“I think it was interesting to listen to other people and understand their struggles also. It was validating.”

Support For Young People Believe & Achieve

Believe and Achieve (B&A) is a bespoke programme of support for 1125 year olds impacted directly or indirectly by meningitis. This includes young people who have had a personal experience, or whose close friends, partners and family have had meningitis.

B&A offers a mixture of activities and support including: • • • • •

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Counselling to help young people work through the emotional impact of meningitis and process what is going on Life coaching for building confidence, motivation or learning coping mechanisms Peer mentoring for those who want to chat regularly to someone who has also been impacted by meningitis Next step mentoring for those who want help with job/university applications, CVs and various skills like essay writing Events that are skills based, related to hobbies or where people challenge themselves while meeting others and having fun. Previous events have included cookery days, online Christmas socials, creativity days and 18+ residential weekends. Events take place throughout the UK and online.

A social media community and media wall where stories and advice are shared.

B&A helps young people consider where they are in life, set and achieve goals, overcome challenges, make new friends, learn new skills, celebrate successes and build confidence while also processing the impact of meningitis with others who understand.

Those involved have told us that B&A has changed their lives. Without B&A they wouldn’t be where they are now. It offers a place to be whoever you want to be, learn something new and have fun with people who get you.

“I totally recommend Believe & Achieve. I’ve met so many lovely people and started to make so many tiny, but positive, changes in my life.”

“I have attended events such as a Centre Parcs residential and received support related to studying; employment rights; physical exercise; anxiety and mental health.”

Supported by

Colin and Lydia’s story

Online Peer Support We offer a Facebook Peer Support group and a Facebook Bereavement Support group. In these closed Facebook groups you can post stories, ask questions and share your experiences with others.

If you prefer not to use your Facebook profile, our Meningitis Now Health Unlocked forum also provides the opportunity to connect with others who have had similar experiences. All you need is an email address to join.

Our peer support groups can help you: • • •

Feel less alone Connect with a community of people with similar or shared experiences Learn more about meningitis and its impact

“The support on the Facebook page is immense. It is a real lifeline knowing you can always talk to someone who is in the same position as you - it’s like becoming part of a family.

Obviously we all wish we had no need to know each other, but we are all connected in a very special way.”

Peer support group: www.facebook.com/groups/mnpeersupport

Lydia’s husband Colin contracted pneumococcal meningitis in November 2019 aged 28, but has also suffered from recurring viral meningitis.

“After a brain tumour diagnosis in 2016 our world was turned upside down. Colin had surgery to remove it and after hearing that it was successful we thought that life could ‘go back to normal’.

“However, a complication of this surgery was a recurrent Cerebrospinal Fluid (CSF) leak. Over the past five years he has contracted viral meningitis five times and bacterial meningitis once.

“Colin has had a tough few years. We have nearly lost him on more than one occasion.

He will never get a complete all clear from hospital as the CSF leak can reoccur at any time. However, he has had numerous operations and procedures to try and seal the area affected, undergoing massive brain surgery three times in the hope that this will prevent meningitis.

“We live in fear of the symptoms happening again and are constantly on high alert anytime he has a headache. We know the signs to look out for and doctors have praised us for our quick response in getting Colin straight to hospital. When it comes to meningitis, acting quickly can be the difference between life and death.

“Meningitis continues to have an impact on our family’s life, Colin suffers with common issues related to meningitis such as problems with memory and concentration, co-ordination, and balance problems, but we have received so much help and support from Meningitis Now through its Helpline and also the Rebuilding Futures Fund. The staff have been amazing – I can’t praise them enough.

Family break through the Rebuilding Futures Fund “The team at Meningitis Now rang or messaged me at least once a week just for a chat or to check how he was doing.

“We were also able to get away for a twonight family break through the Rebuilding Futures Fund, which we were so grateful for as the kids missed out on holidays with daddy over the summer. “

Bereavement support group: www.facebook.com/groups/mnbereavement HealthUnlocked: healthunlocked.com/meningitisnow

For more information about all our support services, please visit www.meningitisnow.org/getsupport

Bereavement Support

Becca and Jess’ story

Losing a loved one is one of the hardest things you’ll ever have to face.

Whether you call our Helpline, speak to one of our CSOs or have a home visit, we’re here to listen and support you through this incredibly difficult time. Our financial support through our Rebuilding Futures Fund can also help with the unexpected costs that come when someone dies.

After losing their Mum to meningitis Becca and Jess were able to draw on support from Meningitis Now.

“Meningitis Now makes us feel like we are not alone. There are people who completely understand the specific trauma caused by this disease, which is a huge comfort. Grief is a lonely journey, so to have people around who are there every step of the way is priceless.”

Forever Events

Forever Funds

We run support events for people who have lost a loved one to meningitis. Forever Weekends are for adults only, whereas our Forever Days are for families. These events provide the opportunity to talk about your loved one, take part in sessions with bereavement specialists and meet others who understand what you’re going through, regardless of how many years have passed.

An online Forever Fund is a lasting way to remember someone special to you, while raising vital funds to fight meningitis. A fund named after your loved one becomes a permanent memorial to them. All the money raised in memory of your loved one is added to your fund.

You are also welcome to visit our remembrance gardens.

Home Visits Home visits are carried out by our CSOs. We can offer bereavement support through the initial grief and trauma and ongoing support tailored to your needs.

Becca says; “Friday 6th April was just a normal day. Mum had been at work and was feeling rubbish with a cold. Nothing went right from that day on.

“Mum and I used to call each other several times a day. That night I finished work and called her with no response. That’s when I knew something wasn’t right.

“I went over to Mum’s house and found her on the living room floor. I checked if she was breathing and phoned 999 straight away. I started CPR until the paramedics came but it was too late to save her.

“I couldn’t cry, I was in so much shock.

After answering the questions for the paramedics I had to make the dreaded phone call to my sister. I didn’t have to say the words - she already knew in her heart what had happened.

“When we finally got the results back to say Mum had meningitis we felt some kind of closure. It has been a really difficult couple of years for me, my sister and my daughters.

“We have felt lost, broken and we couldn’t look forward to our futures.

“We came across Meningitis Now a few months later. It has provided us with a lot of help and support.”

Remembrance garden, Head Office, Stroud

Through Believe & Achieve Becca and Jess have had 1:1 support from the Meningitis Now team, as well as

other professionals and mentors.

They have attended events and Becca’s daughter has also become involved.

Becca says; “Believe & Achieve has given us the chance to spend time just as sisters and it has pushed us out of our comfort zones. It has improved our confidence and given us a different outlook to life.

“We have met some amazing people along our journey. I’m very grateful to have been given such amazing opportunities.”

Jess adds; “The Believe & Achieve ultimate Graduation Day was a great day. I thought it was amazing to bring everyone together, for those who have met before at events and also those who hadn’t met yet. It was so nice to see everyone come together to celebrate the time we have had with Believe & Achieve. I highly recommend joining Believe & Achieve to anyone who is considering it. It has helped massively with my confidence!

“Thank you for a great day!”

Meningitis Helpline 0808 80 10 388 (UK) www.MeningitisNow.org Tel: 01453 768000 info@meningitisnow.org

Fern House Bath Road Stroud Gloucestershire GL5 3TJ

© Meningitis Now April 2023 • Next review March 2024. Registered Charity Number 803016 (England & Wales) SC037790 (Scotland).

Company Registration Number 2469130. References for content of this booklet are available on our website.