Healthy Instincts – Meningitis B
Spotting the symptoms of Meningitis B

We investigated whether 16–24-year-olds and parents of 16–24-year-olds could identify meningitis B symptoms and react quickly enough to prevent life-changing injury or death. Of those we questioned:

  • 68% of 16–24-year-olds and 11% of parents with children of that age failed to identify meningitis B when shown its symptoms 

  • People who could identify meningitis B took 17 hours to do so, five hours after the ‘red flag’ signs appear 

  • Young people said they’d wait until they felt delirious, fell unconscious and were having seizures before they’d seek urgent medical help, drastically increasing their chance of death 

  • People who were shown a skin rash in their list of symptoms sought medical help sooner 

  • 38% of young people and 19% of parents didn’t realise meningitis B could have life-changing side effects 

  • Almost one in four parents said they’ve sought medical help because of a ‘gut instinct’, and eight in ten were right to trust their instinct

Across all ages, meningococcal disease kills one in 20 people it infects, but the death rate among teenagers and young adults is even higher¹. Meningitis B can be fatal within 24 hours². One in five survivors is left with permanent side effects, including limb amputations, skin scars, hearing loss, seizures and brain damage¹.

Early symptoms of meningitis B can look like the flu and by the time classic symptoms arise you can already be seriously ill³. The best way to protect yourself is to get vaccinated but few teenagers and young adults choose to do so. Young people who are still at risk, and their parents, must first understand the illness and then use their instincts to spot when an illness is more serious than it first seems.

We surveyed 615 British 16–24-year-olds and parents of 16–24-year-olds to find out how well they understand the risk of meningitis B to young people and whether their instincts might save the young person’s life.

We found that young people are less aware than parents of the danger meningitis poses to them, less likely to spot the symptoms, and slower to react.

Parents are 1.6 times more concerned than their child about the child getting meningitis B

Spotting the signs on Meningitis B

16–24-year-olds have many concerns, from building relationships to planning their future. But how concerned are they about the prospect of having to face health challenges such as meningitis B at their age?

Of all the life challenges we asked about, young people felt most concerned about planning for their career. It’s a challenge you might expect parents to worry about for their child, but young people were 1.8 times more likely to feel concerned about planning their career than young people’s parents were to feel concerned about their child’s career.

Almost three in four young people felt concerned about the prospect of facing depression at their age, while 65% felt concerned about looking unattractive. Only a fifth as many parents – 13% – felt concerned about their 16–24-year-old child feeling unattractive.

Two in three parents were most concerned about their 16–24-year-old child being attacked by a stranger, more than any other challenge. Sixty percent of parents felt concerned about their child facing depression at their age, while 54% were worried about their child being in a car accident. Parents were 1.7 times more likely to feel concerned about their son (48%) failing exams than their daughter (28%), but 1.5 times more likely to worry about their daughter (26%) having an eating disorder than their son (18%).

Compared to young people’s level of concern, parents were more concerned about meningitis B than anything else. One in four parents felt concerned about the prospect of their 16–24-year-old child getting meningitis B, but only 16% of young people felt concerned about getting the disease.

Are parents more aware of the dangers of meningitis to teenagers and young adults? It would seem so. Young adults were twice as likely to feel concerned about the flu than they were about meningitis B, even though young adults who get the flu4 are less likely to suffer serious consequences than young adults who get meningitis².

Young people are less likely to spot meningitis and slower to react

A Timeline of Meningitis B Symptoms

If young people underestimate the risks of meningitis B more than parents do, are they less able to respond in a way that boosts their chance of coming out unscathed? Based on our research, young people are worse than parents of young people at identifying meningitis B and responding urgently.

To find this out, we simulated the average experience of getting meningitis B³. We asked young adults to imagine experiencing a list of symptoms over a 24-hour timeline, which progressed from a headache at first to life-threatening symptoms as the day went on. They weren’t told these symptoms were caused by meningitis B. At each stage in the progression of symptoms, they had to guess what their illness was and say how they would respond to those symptoms. The symptoms each person saw were a random selection of all meningitis B symptoms, because people who get meningitis don’t get every symptom³.

We showed parents the same timeline of symptoms, but they had to imagine their child was experiencing the symptoms and decide what action they’d take on their child’s behalf.

Two in three young people failed to identify meningitis B as the cause of their imagined symptoms within the 24-hour period, compared to only one in ten parents of young people.

When people did identify meningitis B as the cause, they took about 17 hours after their first symptom to correctly spot the cause – five hours after the earliest diagnostic signs³ appear.

At around the same 17-hour mark, parents said they would seek urgent medical help by calling an ambulance for their child or taking them to A&E. Young people on average took five hours longer – 22.5 hours in total – before they’d start seeking medical help for themselves. Most young adults who’ve had meningitis for 22.5 hours will feel delirious, fall unconscious and have seizures³. Seeking help this late drastically increases your chance of dying².

Getting the classic symptoms of meningitis B might help people respond swiftly. A skin rash is the classic symptom that people recognise, but only around two-thirds of teens³ get it before being admitted to hospital. Parents were marginally better at identifying meningitis B if their child got a rash. Getting a rash made no difference for young people. If parents saw a rash they could identify meningitis 2.5 hours faster than young people – without the rash, parents were just as slow as young people.

Those who saw a rash also sought medical help sooner, especially the parents. Parents who saw a rash either said they would call an ambulance or take their child to A&E after 16.5 hours since the first symptoms. Without the rash, their response time jumped to 20 hours. Getting a skin rash sped up young people’s response time from 22 hours to 20 hours.

Our results suggest that people who don’t get a rash are less likely to seek medical help quickly.

Students are 1.8 times more likely to spot meningitis than non-students

Spotting the symptoms of Men B

Young people were 6.2 times more likely than parents to not realise they had meningitis B during the 24-hour timeline. But not all young people were equally poor at responding.

Young people get better at identifying meningitis B as they age. The 24-year-olds we surveyed were almost twice as likely as the 18-year-olds to spot the disease. Also, 43% of university students spotted meningitis B compared to 23% of young people not at university. We found the same positive effect of age on meningitis recognition within student and non-student groups.

Why were university students better? Students come into close contact with many new people, putting them at greater risk of getting meningitis. To counter this threat, universities have raised meningitis awareness and recommended that students get vaccinated.

Two in five young people and one in five parents couldn’t identify any long-term side effects of meningitis B complications

What are the long term effects of Meningitis B?

Between 30% and 50% of meningitis B survivors6 are left with a permanent side effect. Severe infections cause brain damage, which can lead to hearing loss, memory loss, and more. Blood poisoning caused by meningitis can leave survivors needing limb amputations. We tested whether people realise what complications meningitis can cause and found that 38% of young people and 19% of parents didn’t realise meningitis B could cause any of the side effects we showed them.

The side effect most people realised meningitis B could cause was limb amputation – two-thirds of parents and 44% of young people knew. Less than half of young people and parents knew meningitis could afflict survivors with every other side effect.

A quarter of young people and 43% of parents knew meningitis could cause hearing loss. Memory loss and mood swings were the most misunderstood – one in five connected these side effects with meningitis B. Young people understood less than parents of young people about every side effect.

More often than not people benefit from trusting their instincts

Spotting the signs on Men B Symptoms

A common motto of meningitis awareness campaigns is ‘trust your instincts7, because the early symptoms are cryptic and people can deteriorate rapidly. It’s better to act on a suspicion rather than waiting to get seriously ill.

Almost one in four parents said they’ve sought medical help because of a ‘gut instinct’, and four in five were right to trust their instinct.

Almost one in four parents of 16–24-year-olds told us they’ve acted on a gut instinct and sought medical help for their child because they suspected minor symptoms were a sign of more serious health concerns. Mums were the more proactive guardian, with 47% of mums and 29% of dads saying they’ve trusted their gut feeling about a child’s health.

When parents did act on their gut feeling, eight out of ten times their instinct served them well, as their child had a health problem even if it wasn’t what they thought.

Young people were less likely than parents to have acted on a gut feeling regarding their own health. One in five young women has sought help for seemingly minor health concerns, compared to 14% of young men. Young people’s instincts were less keen than parents’ instincts, but over half still found out they had a health condition, even if it wasn’t life-threatening.

Five groups of bacterial meningitis commonly cause infections in the UK: A, C, W, Y and B. Vaccines are available to help protect against the disease but no one vaccine protects against every group.


Meningitis ACWY

Men B Vaccines - ACWY

Available on the NHS to children aged 14.

 

Meningitis B

Meningitis B Vaccine

Available on the NHS to babies since 2015. Available to other age groups privately, including teenagers and young adults.

Men B group is the most common cause of bacterial meningitis in the UK8.

Conclusion

Our research suggests that parents have spent enough time caring for their children to understand how they can protect them from meningitis B. Parents’ understanding, reactions and instincts appear to serve them well. But young people don’t yet have the experience, or haven’t been given enough information, to develop such healthy instincts.

Young people still living at home might take comfort from their parents’ knowledge. But their parents will be less useful once they’ve flown the nest. Young people living independently, especially at university, are more at risk of getting infected.

A stiff neck and an aversion to bright light are some of the earliest ‘red flag’ signs of meningitis B5. If you experience flu-like symptoms and start getting neck stiffness, leg pain, cold hands and feet, or can’t tolerate bright light, seek medical advice immediately – don’t wait for a skin rash. Trust your instincts.

There are vaccines available to teenagers and young adults if they want one. A vaccine is the best way to reduce the risk of contracting meningitis which poses a risk to your life and long-term health. Contact your local pharmacy today to book a meningitis B vaccination.

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Methodology

We surveyed 350 British 16–24-year-olds and 265 British parents of 16–24-year-olds in November 2018. Of the 16–24-year-olds we surveyed, 149 were attending university and 201 were not. The sample age distributions within young people and parents groups were not significantly different from the population age distribution for those groups. Among parents, women were slightly overrepresented relative to men; when results were dependent on gender, we estimated weighted means to account for gender bias. Participants were told that the survey was about meningitis B after they completed the survey, not before. When collecting data for the 24-hour timeline analysis, we asked participants to imagine experiencing symptoms and to imagine responding to those symptoms in the moment, as it wasn’t possible to record young people’s and parents’ responses to symptoms in real life.

Sources

  1. http://vk.xovg.ox.ac.uk/meningococcal-disease
  2. http://www.who.int/en/news-room/fact-sheets/detail/meningococcal-meningitis
  3. Lancet 2006; 367: 397–403, Clinical recognition of meningococcal disease in children and adolescents Matthew J Thompson, Nelly Ninis, Rafael Perera, Richard Mayon-White, Claire Phillips, Linda Bailey, Anthony Harnden, David Mant, Michael Levin – available at: https://doi.org/10.1016/S0140-6736(06)67932-4
  4. https://www.who.int/mediacentre/factsheets/2003/fs211/en/
  5. Br J Gen Pract 2011; 61 (584): e97-e104, Which early ‘red flag’ symptoms identify children with meningococcal disease in primary care? Tanya Ali Haj-Hassan, Matthew J Thompson, Richard T Mayon-White, Nelly Ninis, Anthony Harnden, Lindsay FP Smith, Rafael Perera, David C Mant – available at: https://doi.org/10.3399/bjgp11X561131
  6. https://www.nhs.uk/conditions/meningitis/complications/
  7. https://www.meningitis.org/getmedia/cf777153-9427-4464-89e2-fb58199174b6/gp_booklet-UK-sept-16
  8. https://www.meningitisnow.org/meningitis-explained/what-is-meningitis/meningitis-vaccines/

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