Meningitis is an infection of the membranes that surround and protect your brain and spinal cord. Though it can affect anyone, it’s most common in babies, young children, and young adults, and is very serious if it’s not treated quickly. Meningitis and sepsis often happen together, can kill within hours, and can have life-changing impact on survivors.
Because it can strike so quickly, it’s important to be aware of all the signs and symptoms.
Following World Meningitis Day, which aims to raise awareness of the disease and how to spot the signs, we’ve put together an animation to share what to watch out for.
A quick chat with Meningitis Now
Meningitis Now is a charity dedicated to fighting meningitis in the UK, by funding research into the disease and supporting those affected by it. We had a chat with Mark Jefferies, Partnerships Fundraiser at Meningitis Now, about the valuable work the charity does.
Why does your charity exist, and what are your aims?
Meningitis Now is here to ensure no-one need face meningitis alone. Our vision is simple - a future where no-one in the UK loses their life to meningitis and everyone affected gets the support they need to rebuild their lives.
Every year in the UK, 8,000 people contract either bacterial or viral meningitis. Around one in 10 who contract bacterial meningitis will die. Of those that survive, 30-50% can be left with lifelong after-effects, such as hearing and sight loss, acquired brain injury, epilepsy, special educational needs, chronic pain and fatigue. Survivors often have limbs and digits amputated as a result of associated septicaemia.
Meningitis is indiscriminate, it can affect anyone, of any age and can rapidly become life threatening. Vaccines are the only way to prevent meningitis.
Until the disease is eliminated from the UK, it remains as important as ever to raise awareness of the signs and symptoms of the disease, fund research to find better vaccines and treatments and to deliver our highly valued range of information and support services.
How does Meningitis Now support people affected by meningitis?
Meningitis changes lives. We cannot change what happens when meningitis strikes but we can help people rebuild their lives, through emotional, practical and financial support. This support includes:
- The Meningitis Now nurse-led Helpline is available to anyone affected by or concerned about meningitis. Our experts provide emotional support, practical advice, disease and vaccine information and can signpost to further support
- We have four Community Support Officers based regionally across the U.K who are available to anyone living with the impact of meningitis, offering a listening ear, home visits, accurate disease information, referrals to other specialist organisations and access to financial support
- Our Rebuilding Futures Fund pays for items and services to improve the wellbeing of people affected by meningitis. For example, specialist equipment, disability aids, rehabilitation costs, training, counselling, creative therapies and home adaptations
- Believe and Achieve is our programme for 14-25 year olds to help them to prepare for a successful future and take their next step into education or employment. It offers workshops, coaching, mentoring, peer support, counselling and opportunities to meet others.
We also run support events to bring together people – such as Family Days, activity weekends for teenagers and ‘Forever’ events for bereaved families.
What is it that drives the Meningitis Now team towards achieving their goals?
Our inspiration is the families that we support and we often create communities through the services that we provide – we like to think of it as the Meningitis Now family. For each person we support, we want them to feel hopeful that they will rebuild a positive future.
We’re driven to improve vaccine uptake to protect those most at risk of meningitis and raise public awareness of the signs and symptoms of the disease - certain in the knowledge that early medical intervention both saves lives and improves outcomes for those who survive.
In our 35 year history, we’ve invested £12.5 million into scientific research that has helped to develop five lifesaving vaccines now available on the NHS – reducing the number of UK meningococcal meningitis cases by nearly 80% in the last 20 years. But unfortunately, 8,000 people in the UK still contract meningitis every year. That is 22 people, every day. We’re proud of the progress that's been made. But there’s still much work to be done, as we haven’t beaten meningitis yet.
How challenging has the past year been – what have been the positives and negatives?
The arrival of COVID-19 heralded unprecedented disruption for Meningitis Now with lockdown and the restrictions to social activities affecting our ability to fundraise and deliver key areas of our work. The financial implications of the pandemic were stark and we lost almost half of our budgeted income for 2020/21 as a result of cancelled events and community, individual giving and corporate fundraising.
Many people that we support felt anxious about whether their after-effects put them at greater risk of contracting COVID-19, whilst others were concerned about meningitis symptoms but did not want to overload the NHS. Bereaved people felt the loss of their loved ones even more acutely whilst confined at home.
An enormous positive was the way in which our support services adapted and endured. We’ve held virtual support events on issues such as health anxiety and fatigue and ran online social events for young people.
During the period of the first lockdown and throughout the summer, we created The COVID-19 Young Futures Fund to provide financial support of up to £500 for items relating to the ongoing education, development, and emotional wellbeing needs of children and young people aged 25 and under.
Overall, we made 62 awards totalling just under £24,000 and provided items such as laptops and tablets with specialist therapy apps and educational programmes, printers for home schooling, sensory equipment and toys.
If you could pick one thing that your charity has learnt over the past year that you think is the most important, what would it be?
We’ve always strongly believed that our staff, volunteers, the people that we support and those who support us contribute to our Meningitis Now family. Over the past year we’ve called upon this family like never before, as we faced what we called ‘Our Biggest Challenge’.
During a year that brought such profound uncertainty, anxiety and sadness, it‘s been both humbling and reaffirming to see how much the charity means to a great many people and organisations across the UK, many of whom have fundraised virtually, increased their usual donation amount or simply sent messages of support. Everyone at Meningitis Now is enormously proud of the way that COVID-19 has reinforced the ties that bind us, the meningitis family, together in our fight to beat meningitis for years to come.
Now things are opening back up again, has Meningitis Now got anything planned to fundraise or raise awareness?
We’re so excited that our events and fundraising activities are starting to gather momentum once again.
Why not take part in the 5k May Challenge? We’re asking our supporters to complete 5km in whatever way they can – whether it’s run, roll, walk, cycle, swim, skate or even skip – then donate a minimum of £5 to Meningitis Now, and finally nominating five friends to carry on this challenge. The nominated five friends or colleagues can choose to support Meningitis Now or one of the many other charities that are signed up as part of this ‘Run for Heroes’ challenge.
This international challenge was really successful last year in raising funds for NHS Charities and this year Run for Heroes have decided to open it up for all charities to take part. You can read more about it on the Run for Heroes website.
There are still places available to join our team and run the iconic London Marathon on Sunday 3rd October. Any groups looking for a challenge this year could take part in The Lake District 8 Peaks challenge, walking 20 miles of stunning countryside between Thursday 14th and Sunday 17th October. Visit our fundraising page for more information on these events.
Finally, Meningitis Now are featured in a special BBC Lifeline broadcast on Sunday 25th April at 1.50pm on BBC2. The film includes the moving accounts of three families that we support and will be available to watch on the BBC website if you miss the live showing.
Learn more about meningitis and the amazing work the charity Meningitis Now does by visiting their website.
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