Tag: Meningitis Now

Raise awareness for World Meningitis Day

LEADING UK meningitis charity Meningitis Now has launched a new Signs and Symptoms video to help raise awareness of the deadly disease to mark World Meningitis Day on Saturday 24 April.

The charity is also calling on local supporters to raise awareness with friends, family and in their community and help #DefeatMeningitis. 

In a second video released for the annual day, an initiative of the worldwide Confederation of Meningitis Organisations, charity supporters Holly and Lewis Andrews, from Worcester, are also helping to spread the word by telling their story.

In the video Holly and Lewis talk about how they had already watched their son Theo battle bacterial meningitis in 2018. Fortunately, he recovered. When his baby brother Jasper became unwell in March 2020 they couldn’t believe that history seemed to be repeating itself.

“Meningitis can wreck lives and it’s vital that everybody understands how serious it can be for individuals and families. That’s why we’re supporting World Meningitis Day. 

“By telling our story, raising awareness of the signs and symptoms and increasing vaccine knowledge, we hope to raise the profile of this devastating disease,” they said. 

Thankfully, Jasper, who was diagnosed with viral meningitis, also went on to make a good recovery.

Holly added: “I couldn’t get my head around the fact that both our babies had contracted meningitis. I had so many questions, so many whys? What ifs? How could this have happened again? What did we do wrong?

“I reached out to Meningitis Now again, and shared all my concerns and all my questions, and they were great. They told me about a Facebook support group, which has been a huge help for me.

“Both boys are doing fantastic, they’re both so happy, so content and are already the best of friends, they love each other so much.

“We still can’t quite believe that in the last three years meningitis has hit our little family twice and I don’t think you can ever get over the constant worrying and panicking, but I think it’s just something you learn to live with.”

The family’s full story is on the charity’s website at www.meningitisnow.org/support-us/news-centre/meningitis-stories/jaspers-story

Meningitis Now Chief Executive, Dr Tom Nutt, said: “We want to use World Meningitis Day to help spread the word and raise awareness of the signs and symptoms and reinforce that, on World Meningitis Day, as on every other day, we are here to help and support those who need us.

“With the impact of Covid-19 leading to some people missing their immunisations and the number of meningitis cases expected to rise when people start to gather again it’s important that we keep meningitis awareness on everybody’s radar.

“Please join us on 24 April for World Meningitis Day, take action and #DefeatMeningitis.”

Meningitis is inflammation of the membranes that surround and protect the brain and spinal cord, usually caused by bacteria or viruses.Early signs and symptoms can be similar to ‘flu, tummy bug or a hangover and include fever, headache, nausea, vomiting, diarrhoea, muscle pain and stomach cramps.

More specific signs and symptoms include fever with cold hands and feet, drowsiness, confusion, pale blotchy skin, stiff neck, dislike of bright lights and a rash, which doesn’t fade under pressure. Symptoms can occur in any order and some may not appear at all.

If someone is ill and getting worse seek urgent medical attention.

Of those who contract bacterial meningitis one in ten will die and one in three survivors will be left with life-changing after-effects.

The awareness day takes place as Meningitis Now launches its new five-year strategy aiming to defeat meningitis in the UK within a generation.

The charity is working towards a future where no one in the UK loses their life to meningitis and everyone affected gets the support they need.

It does this by funding research into vaccines and prevention, raising awareness so people know what to look for and what action to take if they suspect meningitis and rebuilding futures by providing dedicated support to people living with the impact of the disease.

For more information visit www.meningitisnow.org

Remember loved ones this Christmas with Meningitis Now’s charity ribbon appeal

CHARITY MENINGITIS NOW has launched its annual Ribbon Appeal to remember loved ones at Christmas and donate to fight back against the devastating disease.

Families impacted by meningitis but not bereaved are also invited to support the appeal.

Supporters honour their loved ones by writing their name on a white ribbon for display by the charity or to wear or hang on their own Christmas tree at home.

All donations go towards Meningitis Now’s ongoing lifesaving and life-changing work, rebuilding futures by providing dedicated support to people living with the impact of the disease, as well as raising awareness so people know what to look for and what action to take if they suspect meningitis and funding research into vaccines and prevention.

Meningitis Now supporters normally come together for a moving Christmas concert in Gloucester Cathedral every December, where the ribbons are displayed on a Christmas tree. Instead, this year, the charity will host a virtual Christmas Carol Concert, live on Facebook at 7pm on Tuesday 8 December, which will include a recording of the ribbons hanging on the tree at the centre of its Remembrance Garden at its Head Office in Stroud.

Tom Nutt, Meningitis Now’s chief executive, said: “We know that Christmas can be a difficult time and this year will be especially difficult for many. Although we can’t be together this year we can still remember together.

“Meningitis has no respect for this special time of year. Twenty-two families every day throughout the festive period will feel its impact, with some lives sadly being changed forever.

“Please support our Christmas Ribbon Appeal and help us to keep fighting this terrible disease and be there for families who need our support, at Christmas-time and throughout the year. And please join us for our online concert – you’ll be very welcome, whether you have a meningitis experience or not.”

Meningitis Now is working towards a future where no one in the UK loses their life to meningitis and everyone affected gets the support they need.

To dedicate a ribbon by Tuesday 1 December or donate, visit the Meningitis Now website at:

https://www.meningitisnow.org/support-us/events/fundraising-events/support-us-christmas/ribbon-appeal-2020/ 

For details on the virtual Christmas Carol Concert see:

https://www.meningitisnow.org/support-us/events/fundraising-events/support-us-christmas/gloucester-christmas-carol-concert/

The charity’s helpline is available on 0808 80 10 388 or email:

 helpline@meningitisnow.org

Meningitis charity warns: there’s no room for complacency

National charity, Meningitis Now has warned parents not to be complacent about meningitis after quarterly data released by Public Health England (PHE) show that cases of the disease be at their lowest since records began.

During the quarter April to June 2020, all cases of meningitis dropped to 29 compared to 121 for the same period in 2019; a drop of 76%*. 

Citing the lockdown period data as a ‘false dawn’, Meningitis Now, CEO, Dr Tom Nutt, urges parents and adults to remain vigilant and not to assume that meningitis has gone away. 

“Whilst these numbers are good to see, we have some real concerns about people becoming complacent about meningitis. Let’s be clear, the disease has not gone away, and it is still a real and present threat, particularly MenB, which is most prevalent amongst those who are most at risk, babies, teenagers, and older adults.”

The data published by PHE reinforces Dr Nutt’s concerns, with MenB accounting for 59%* of the cases that did occur during the lockdown period being among those who are unlikely to have been vaccinated against this particular strain.

“Of greatest concern at this time is a potential increase in cases among young people who have just gone to university,” continues Dr Nutt. “With reported cases of Covid-19 rising significantly on campuses across the UK, it is very likely that there will be an increase in cases of meningitis amongst students.

“Whilst we would normally see an increase in cases at this time of year, the Covid dimension and the advice to self-isolate could be disastrous if the illness is due to meningitis, which can take a life in as little as 24 hours.

“Our advice, particularly those who are at risk, is to know the signs and symptoms of meningitis and if you have concerns about yourself, a loved one or a friend call 111 immediately and get medical help.”

UK parents urged to warn children don’t assume it’s Covid if they fall ill at university

Parents of UK students are being urged to ensure their children don’t confuse Covid-19 with other killer diseases such as meningitis. The message, from the meningitis charity, Meningitis Now, comes as thousands of young people prepare to leave home for university for the first time.

With as many as half a million students setting up home, often in Halls of Residence, in the coming months, many universities will be expecting the usual health issues such as Fresher’s Flu and hangovers to be complicated by Covid-19 this year and all will be taking measures to help prevent it.

“But what about meningitis?” says Dr Tom Nutt, CEO at Meningitis Now. “The harsh reality is that some students will contract meningitis whilst at Uni this coming autumn and how easy will it be to put a headache and feeling unwell down to Covid-19 and self-isolate?

“And whilst this is the correct response for Covid-19, it could be disastrous if the illness is meningitis. When meningitis strikes it does so quickly and any delay in diagnosis or treatment can cost lives.

“Our message to parents as they battle with the uncertainties of university starting dates, online tutorials, and living arrangements, is to be certain about meningitis and to ensure that their children are aware of the signs and symptoms of meningitis and that if they are feeling unwell they shouldn’t simply assume it’s Covid-19 or a hangover and that they should seek medical help immediately by calling NHS 111 or their GP.”

Nineteen-year-old Ben, a student at the University of Portsmouth knows how quickly meningitis can strike having contracted meningococcal B in November 2019.

Keen to pursue a career as a Naval Officer, Ben was just one month into college when he became unwell, disorientated, and confused.

He was told that it was a hangover. Ben, who had been given the MenACWY vaccine, had contracted MenB – a strain of the disease he was not vaccinated against. The quick thinking and speedy action of his flatmates saved his life.

“Being told that our son was the sickest patient in the hospital, will live with me forever,” says Ben’s mother, Arlene de Souza. “The outcome for Ben could have been very different if he and his mates had also been dealing with the added confusion of Covid-19. Ben has been lucky.”

Ben has now recovered fully and intends to restart his university studies this autumn.

The student environment is the perfect breeding ground for diseases such as meningitis, as large groups of people start to cohabit and mix for the first time – some of whom will unknowingly be carrying the bug that causes this disease.

This is further exacerbated by the fact that up to a quarter of 15 to 24-year-olds carry meningococcal bacteria in the back of their throats, compared to one in 10 of the general population.

Whilst many students going to university or college this year are likely to have been protected against MenACWY, having received the vaccine at school, up to half a million people aged up to the age of 25 may have missed this important jab, and very few will have been vaccinated against MenB – a strain that causes most cases of bacterial meningitis in the UK. 

Letters: New Year, New You

Dear Editor

I’d like to invite your readers to make a New Year’s resolution to help us fight back against the devastation of meningitis in 2020 by joining our New Year New You campaign.

I know only too well the misery meningitis can bring. I was just 16 when I contracted bacterial meningitis, which left me seriously ill in hospital. Thankfully, I made a good recovery but others are not so fortunate.

Now, we’re inviting everyone to join us and sign up for a Meningitis Now challenge or community event as part of our New Year New You campaign. We have lots to choose from, to suit all levels of fitness and interest, including treks, cycles and runs, in this country and abroad.

All the details are on our website at https://www.meningitisnow.org/support-us/news-centre/news-stories/new-year-new-you/

The serious point is that by doing so not only will you be getting in shape and achieving your personal goals but you will be making a real difference to those at risk of meningitis and those whose lives have already been changed forever because of it.

Money raised will help to fund preventative research, raise awareness and support those affected by the disease through Meningitis Now’s unique range of services.

Please join us if you can in 2020 – together we can make a difference and fight back against meningitis.

Thank you

Seema Jaswal

Television presenter and Meningitis Now Ambassador

Grieving mum calls on medical professionals to listen to parents

A HEARTBROKEN MUM who lost her young son to meningitis is appealing to parents to trust their instincts and for medical professionals to listen to their concerns. 

Georgie Hall and her husband Bryan, from Wrentham in Suffolk, endured the agony of losing their son Ollie, 6, to meningitis in October 2017.

Speaking at the annual Christmas concert of patient support charity Meningitis Now at Gloucester Cathedral earlier this week, Georgie said: “There are a few things I would like to tell every parent out there in the hope they never have to experience the pain that we are. 

“Firstly, trust your instincts. You know your child better than anyone. The experts at the inquest into Ollie’s death all agreed that doctors should listen to the parents and parental views should weigh heavily in the medical assessment of the child.

“The hardest part of the inquest was hearing that Ollie could have been saved if he had been treated sooner.

“My greatest regrets are allowing the paramedics and GPs to ignore my concerns and trusting them instead of my instincts. I’m so sorry my darling Ollie.”

The couple are also calling for parents to ensure their children are vaccinated against the disease.

“The second thing is to have your child vaccinated. MenB has a vaccine. It’s not available to everyone so check with your GP whether your child is covered. If they aren’t, the MenB vaccine can be bought in many High Street pharmacies.” 

Ollie had been too old to get the MenB vaccination from the NHS when it was first introduced to the schedule in 2015, following campaigning by Meningitis Now, and his parents were unaware it was available privately.

He became ill on 23 October 2017 and as his condition worsened his concerned parents called 111, rather than wait for an appointment with their local GP. An ambulance was called but paramedics dismissed meningitis, as did doctors at a local surgery where Ollie was taken.

“The four medical professionals discussed Ollie among themselves almost to the point of ignoring anything I wanted to say,” Georgie said. 

They concluded that Ollie had a viral infection and he was sent home to rest.

“My instincts were telling me they were wrong but I felt I could not argue”, Georgie added.

As Ollie’s condition continued to deteriorate and a rash began to develop he was taken back to the surgery and an emergency ambulance was called, only to find none was available. He was driven to hospital by his parents, but it was too late and he died the next morning.

An inquest into his death in June this year concluded there had been a ‘gross failure’ to provide basic medical treatment and the Suffolk coroner called for urgent improvements to prevent further deaths.

Ollie’s parents had earlier told the week-long inquest that they felt they had been made to feel like ‘over-sensitive parents, who didn’t know what we were talking about.’

The family was represented at the inquest by Shoosmiths, the major law firm noted for its expertise in medical negligence cases. Shoosmiths is working with the family to campaign for medical professionals to listen more to parents’ concerns.

Michael Burrell, Senior Associate with the firm, said: “Parents know their child better than anyone, especially if that child is poorly or off colour.

“It is surprising, given Ollie’s symptoms and that Georgie repeatedly raised the possibility of meningitis with the medical professionals, that her concerns were seemingly disregarded so readily without the simple tests which could have reassured Georgie or led to a lifesaving diagnosis having been undertaken.

“We are hopeful that the evidence obtained as part of the coronial process will help ensure lessons are learned so that no other family has to go through what Georgie and Bryan have experienced.”

Georgie added: “It was shocking how fast the disease took over Ollie’s body. In less than 24 hours from showing his first sign of being ill he had died. 

“Nothing can prepare you for that as a parent, no one expects to see their child die, it just doesn’t make sense. How could my happy, healthy 6-year-old boy be here one minute and gone the next?

“Ollie was up to date with all his routine childhood vaccinations. Then, a few days later we found out that it was MenB and the vaccine for this strain wasn’t available to babies back in 2011 when Ollie was born.

“As if our hearts weren’t broken enough, we then discovered that we could have purchased the vaccine privately.

“The laboratory results confirmed that Ollie would have been protected by the vaccine. My heart was shattered.”

Meningitis Now Chief Executive Dr Tom Nutt said: “Ollie’s parents Georgie and Bryan did everything right. They noticed his symptoms. They sought help. It is an absolute tragedy that they could not prevent the death of their son.

“This case highlights the need for parents to know the signs and symptoms of the disease and that, like Georgie, they should trust their instincts and seek medical help as quickly as possible.

“We urge all parents to check too if their child has received this vaccination and if not to do so as soon as possible.”

Meningitis Now is working towards a future where no one in the UK loses their life to meningitis and everyone affected gets the support they need.

It does this by funding research into vaccines and prevention, raising awareness so people know what to look for and what action to take if they suspect meningitis and rebuilding futures by providing dedicated support to people living with the impact of the disease.

Visit the website at www.MeningitisNow.org to find out more, learn the signs and symptoms and donate.

Scottish sister runs for meningitis in brother’s memory

THE sister of a teenager who died of meningitis is taking to the roads of Edinburgh to raise money in his memory.

Rachel Smith, of Kirkcaldy, will be running a half marathon in the Edinburgh Marathon festival next year for Meningitis Now to honour brother Gregor, who died aged just 13. Continue reading Scottish sister runs for meningitis in brother’s memory

Remember loved ones with charity ribbon appeal

A heartbroken mum who lost her son to deadly meningitis last November has launched a national charity’s Christmas Ribbon Appeal.

Katie Joyce had to take the agonising decision to turn her 4-year-old son Enzo’s life support machine off after scans showed the disease had left the youngster – the happiest and most bubbly boy Katie ever knew – brain dead. Continue reading Remember loved ones with charity ribbon appeal

Join us in the London Marathon and help beat meningitis

Dear Editor

We’d like to invite any of your readers who have been successful in the ballot for next year’s London Marathon, announced this week, to join our team and stride out to help beat meningitis.

By running for Meningitis Now you’ll be helping us to fight meningitis in the UK and move us ever nearer to our vision of a future where no one dies from the disease and everyone affected gets the support they need.

Sadly, meningitis and septicaemia continue to affect thousands of people in the UK each year and kill more under-5s than any other infectious disease. Help us fight back by funding research, raising awareness and supporting survivors.

Those who haven’t been successful in the ballot can also apply to us for one of our guaranteed places in the Marathon – visit www.meningitisnow.org/vmlm

There’s a £100 registration fee and successful applicants will need to pledge to raise £2,000.

Our friendly events team is on hand to support your training and fundraising and, as well as a running top, we provide a post-race reception, including a sports massage and lunch.

It’s a day not to miss. Why not join our #teamtangerine today? Find out more by emailing me at kirstyo@meningitisnow.org

Yours faithfully

Kirsty Owen-Hayward,

Events Fundraising Manager,

Meningitis Now,

Stroud, Gloucestershire GL5 3TJ