Meningitis and Septicaemia Symptoms, disease information and the work of Meningitis Research Foundation 15/02/2019 www.meningitis.org

What is meningitis? Everybody’s brain and spinal cord sits within a protective lining known as the meninges. The meninges themselves consist of three layers: Dura Mater, Arachnoid Mater and Pia Mater. The Arachnoid and Pia Maters are connected to each other by cobweb like strands and the space between the two (the subarachnoid space) is filled with Cerebro Spinal Fluid. This fluid has many functions, but is largely to aid with brain bouyancy (keeping the lower parts of the brain from being crushed by the weight of the brain), cushioning and chemical regulation. When a pathogen enters this sterile environment it can begin to multiply and cause inflammation. This inflammation puts pressure on the brain which causes the symptoms of meningitis and can cause permanent damage. 15/02/2019 www.meningitis.org

What is septicaemia? Septicaemia is the blood poisoning form of the same infection and can occur together with meningitis or separately. As bacteria enter the bloodstream (as opposed to the cerebrospinal fluid) they rapidly multiply and produce poisons which travel around the body causing damage to blood vessels and organs. The blood vessels can start to leak. This leads to the characteristic rash (pictured) as well as a number of other characteristic symptoms that we’ll look at in a bit more detail later. 15/02/2019 www.meningitis.org

What causes meningitis? Meningitis can be caused by many pathogens; bacteria, virus, fungus or parasite. Bacterial – This is the most common, life-threatening form of the disease. Meningococcal Bacteria (pictured) is the most common bacterial cause Many other bacteria can cause meningitis as well: - Pneumococcal - Haemophilus Influenzae B - Group B Streptococcus (neo-natal) - Tuberculosis Meningitis can be caused by many pathogens. It is usually bacterial or viral and occasionally is due to fungal infections. Bacterial meningitis is more serious and whilst most cases in the UK and Ireland are caused by meningococcal bacteria, many other bacteria can cause meningitis as well. For example, pneumococcal, Hib and TB bacteria. Three common neonatal forms of meningitis are Group B Strep, E.Coli and Listeria. How infection is acquired by the baby differs somewhat between these types. Group B Strep (the most common cause of neonatal meningitis) is usually transmitted to the baby via the birth canal during the later stages of labour, whereas listeria is usually transmitted to the baby across the placenta before birth. E-Coli infection may occur during delivery, or from bacteria acquired in hospital or at home. Meningococcal Bacteria 15/02/2019 www.meningitis.org

Meningococcal bacteria The bacteria live naturally at the back of the nose and throat One in ten carry the bacteria at any given moment They are spread through prolonged close contact: Coughing Sneezing Breathing each other’s breath Kissing someone that is carrying the bacteria Invasive bacteria can cause meningitis and/or septicaemia 5 day incubation The bacteria that cause meningococcal infection are surprisingly common and live naturally at the back of the nose and throat. In fact, at any one time about one in ten of us can be carrying the bacteria in our noses and throats without ever knowing they are there, and for most of us this is harmless. We pass the bacteria between each other through prolonged close contact: coughing, sneezing, kissing. Usually we have to be in very close or regular contact with someone for the bacteria to pass between us. Even when this happens, most of us will not become ill because we have natural immunity. The bacteria cannot survive for more than a few moments outside the human body, so they are not carried on things like clothes, bedding, toys or dishes. This is something we commonly have to reassure worried parents about on our Helpline. So How do people get it? People get the disease when the bacteria move from the nose and throat and invade the body. If this happens urgent medical attention will be required, as the earlier the treatment the better the outcome. We do not yet fully understand why some people get ill from germs that are harmless to most of us. Meningococcal Bacteria 15/02/2019 www.meningitis.org

Other causes Viral – Not usually life threatening. Viral meningitis is still a serious infection that presents with flu-like symptoms. Many people can get over viral meningitis without hospital treatment. Fungal – Extremely rare in the UK. Fungal meningitis can be a chronic (long-term) illness that mainly affects people with compromised immune systems. Coxsackie Virus As well as bacteria, these other microbes can cause meningitis. Viral meningitis is an important cause of disease in the UK Fungal meningitis is extremely rare in the UK. Fungal meningitis can be a chronic (long-term) illness that mainly affects people with compromised immune systems. Parasitic meningitis is present around the world but very rare. You can essentially disregard parasite as a cause in the UK, this slide is trying to depict the sheer amount of possible causes of meningitis and septicaemia. Viral and bacterial meningitis are differentiated by way of a lumbar puncture (a procedure that extracts a small amount of CSF from a pocket at the base of the spine). Parasitic – Present around the world but very rare. The single celled organism Naegleria fowleri enters the body through the nose and infects the lining of the brain. Cryptococcal Neoformans Naegleria fowleri  15/02/2019 www.meningitis.org

Disease burden 3,200 people affected by bacterial meningitis and septicaemia in the UK on average each year for the past 15 years 1 in 10 people who contract meningitis and septicaemia will die 25% of survivors will be left with life-altering after permanent effects We estimate that on average over the past 15 years about 3,200 people have got bacterial meningitis and associated septicaemia in the UK - around 9 cases in the UK per day. One in ten of these cases will be fatal. Of those that survive, 25% will have life-altering after effects. 15/02/2019 www.meningitis.org

Meningitis - After effects Deafness/hearing & balance problems Speech problems Learning impairment Blindness or sight impairment Weakness, paralysis/spasms of part of body Epilepsy Memory loss/lack of concentration Clumsiness Headaches After effects can range from anything from problems with learning to severe brain damage/limb loss and skin damage. Quite often, after-effects are harder to quantify, these include: - clumsiness, memory loss and lack of concentration, and the impact that these have on the quality of life isn’t fully recognised by policy makers. Meningitis is the leading cause of acquired deafness in children 15/02/2019 www.meningitis.org

Septicaemia – After effects Amputations Kidney damage Lung damage Scarring/muscle damage Arthritis Memory loss/lack of concentration Clumsiness Distorted bone growth Septicaemia is also associated with a higher rate of after effects. Notably, loss of limbs, and organ damage (often kidney, lung) Again some of these are hard to quantify: memory loss, lack concentration, clumsiness. 15/02/2019 www.meningitis.org

Who gets meningitis? Anyone of any age can contract meningitis and/or septicaemia The groups considered most at risk are: Babies and small children as they continue to build their immunity towards bacteria and viruses Students are the second highest risk group after babies There is a common misconception about meningitis and septicaemia; that they only affect young people. In fact, this is not the case. These diseases can affect anyone of any age and we still have no idea why it affects some people rather than others. It is true that babies and young people are more at risk. This is for various reasons; babies might not have fully developed immune systems leaving them without a natural resistance and There are forms of meningitis that solely affect babies - group B strep meningitis can be transferred from mother to baby in protracted labours. There are other reasons that children are more susceptible; pneumococcal meningitis can occur as a result of ear infections – something that babies and young children are more susceptible to. The other group considered to be ‘at-risk’ are students in their first few weeks of University. The main reason is because this age group carry the bacteria more than the rest of the population (1 in 4 compared to 1 in 10) – their behaviour (kissing, smoking, living in close proximity) puts them at higher risk of contracting the bacteria. 15/02/2019 www.meningitis.org

Meningitis Vaccines Childhood Immunisation Schedule 2 months 3 months DTaP/IPV/Hib/HepB DTaP/IPV/Hib/HebB PCV13 Hib/MenC MMR MenB How can we prevent people from getting ill, in turn preventing these deaths and these life altering after effects? Immunisation in the UK has helped reduce the burden of meningitis in the UK. This is the routine childhood immunisation schedule. Every injection here protects against some form of meningitis or septicaemia. For example - A vaccine which protects against Haemophilus influenzae type b was introduced to the schedule in 1992. Before introduction of the conjugate vaccine, Hib was the most common cause of bacterial meningitis in children causing about 800 cases per year but has now been almost eliminated. The menC vaccine was introduced in 1999 and has now successfully reduced cases to just a handful each year. The MenB vaccine was introduced in September 2015. The MenB vaccine has been shown to be working well following its introduction to UK infants. disease surveillance revealed that cases of disease had halved in vaccine eligible age groups. (Based on this data, vaccine efficacy against all MenB strains after two doses of vaccine has been calculated to be 83%. However if it is taken into consideration that the vaccine is only predicted to protect against 88 % of circulating strains in the UK then the efficacy is 94% against the strains that it is predicated to cover). vaccines are the only way to prevent meningitis and as you can see, and have almost eliminated some kinds of meningitis. 15/02/2019 www.meningitis.org

Distribution of confirmed IMD cases by capsular group, England This graph again gives you a sense of the importance of immunisation programmes. The Men C vaccine was introduced in 1999 and cases of C-strain meningitis and septicaemia have decreased by more than 90%. The vaccine has prevented over 13,000 cases and 1,300 deaths. The reason for this success was not just because the vaccine directly protected babies from disease, but because it was introduced with a one-off catch up campaign, which extended to teenagers and young adults. This stopped people in this age group from carrying bacteria and reduced the spread of disease amongst the wider population – an effect known as herd protection. When a population has herd immunity it means that enough people have been vaccinated so as to stop the spread of the infection to unprotected individuals within the population To maintain low levels of disease and to make the overall MenC programme more effective, there was the introduction of the MenC adolescent booster dose, which has since been replaced with the MenACWY vaccine. MenACWY maintains protection against C but includes importantly protection against Group W meningococcal disease Source: PHE 15/02/2019 www.meningitis.org

MenW We can see from this graph that cases of meningococcal W (MenW) have been rising steeply year on year in England and Wales. Public Health England has shown that in 2014/15 MenW accounted for 24% of cases of meningococcal disease compared to only 1 – 2 % in 2008/9. Source: PHE 15/02/2019 www.meningitis.org

Meningococcus Genome Library The meningococcal genome library, originally funded by MRF has played a vital part in helping Public Health England to stay a step ahead of the game in the fight against meningococcal disease. Analysis of MenW isolates in the genome library has revealed that almost all of the increase in MenW disease is attributable to a particularly virulent strain of group W meningococcal bacteria called ST-111.  The ST-11 strain is associated with severe illness which often requires treatment in intensive care and has a higher associated death rate than other strains of meningococcal disease, (13% case fatality compared to 5-10%). The rise in this ST-11 strain is particularly alarming because it is striking mainly healthy people across all age groups, with a marked spike amongst teenagers and cases are rising steeply. 22 cases were reported in 2009 compared with over 200 cases in 2016. MRF’s genome library identified this bacteria to be very similar to a strain which had been causing high disease rates and very high fatality rates in South America. 15/02/2019 www.meningitis.org

MenACWY Vaccine As an emergency response to this rapid rise in disease the adolescent MenACWY vaccination programme is currently being rolled out. This vaccine in being routinely offered to year 9’s, as a direct replacement of the MenC Booster, and a catch up programme to cover all 14 to 18 year olds was started in August 2015. New starters at university up to the age of 25 are also being offered this vaccine. Adolescents aged between 14 to 18 are more likely to carry meningococcal bacteria than any other age group and offering ACWY vaccine to all of them will protect them directly and should stop the bacteria from being passed on. This means that even unvaccinated people will be protected from catching the disease – herd protection. 15/02/2019 www.meningitis.org

Online eligibility checker To help people know if they are eligible for the MenACWY vaccine we have created an online eligibility checker. People can simply put in their date of birth and where they are from in order to work out if they are eligible for the vaccine or not. 15/02/2019 www.meningitis.org

Vaccines give excellent protection, but cannot yet prevent all forms of meningitis and septicaemia, so… Remain vigilant about signs and symptoms Remember that anyone of any age can contract meningitis and septicaemia The earlier the treatment, the better the outcome Whilst vaccinations are in place, awareness of symptoms is key. I just want to reiterate how important it is to remain vigilant about the signs and symptoms. Not all types of meningitis are vaccine preventable. Whilst we strive for prevention, people are still getting ill. Anyone of any age can contract meningitis and septicaemia. The earlier the treatment, the better the outcome!! I have lots of symptoms information with me for you to take away after this session so please do! 15/02/2019 www.meningitis.org

What are the symptoms? Symptoms of meningitis and septicaemia can often appear as flu like symptoms initially and may be harder to distinguish from milder illnesses. Not everybody gets all the symptoms and they can appear in any order. 15/02/2019 www.meningitis.org

Meningitis Symptoms The symptoms that are circled are more specific to meningitis and less common in milder illnesses. 15/02/2019 www.meningitis.org

Septicaemia Symptoms Again, for septicaemia, those that are circled show the symptoms that are more specific to septicaemia and less common in milder illnesses. 15/02/2019 www.meningitis.org

The Rash A non blanching rash is a late sign of septicaemia It is not present in all cases of meningitis THE RASH – You’ve probably heard of the ‘meningitis rash’ or the ‘septicaemia rash’ and you may have heard about the ‘tumbler test’. These terms are all referring to a non-blanching rash. That is, a rash that does not fade under pressure from a glass. If a glass tumbler is pressed firmly against a septicaemic rash, the rash will not fade, you will be able to see it through the glass. If this happens a person should seek medical help immediately. It is very important to note that in the early stages, the rash might fade. If it fades, it is advisable to repeat the test after a short while. REMEMBER – if someone is seriously ill but does not have a rash, they still need urgent medical attention. It is a misconception that a rash will always appear. This is not necessarily the case. The tumbler test Use a clear glass - if the rash does not fade, get medical help immediately 15/02/2019 www.meningitis.org

The Rash On dark skin the rash may be more visible in paler areas, e.g. soles of feet palms of hands abdomen inside the eyelids inside the mouth The rash can be harder to see on dark skin so a person should check for spots over the whole body, especially on paler areas like palms of the hands, soles of the feet, on the stomach, inside of the eyelids and on the roof of the mouth. Courtesy D A Warrell 15/02/2019 www.meningitis.org

Babies with meningitis or septicaemia can also get these symptoms Stiff body, jerky movements, or abnormal posturing Irritable, particularly when handled, with a high pitched, moaning or odd cry Unusual grunting Poor feeding Vacant staring or poorly responsive or lethargic Tense/bulging fontanelle Pale or blue skin As well as those listed on previous pages, babies may also get the symptoms listed on this slide and you will see a baby watch card in your information packs.… An important point to note, findings from a recent MRF funded study in neonates have shown that 50% of babies under 3 months of age with bacterial meningitis present with a normal or low temperature... 15/02/2019 www.meningitis.org

Always remember… Trust your instincts Symptoms can appear in any order Not everyone gets all the symptoms Meningitis and septicaemia can occur together or separately Someone who has meningitis or septicaemia needs medical help urgently Always Remember…   Trust your instincts Symptoms of meningitis and septicaemia can appear in any order Not everyone who gets meningitis and septicaemia gets all the symptoms - Again, to reiterate - 50% of babies under 3 months of age, who have bacterial meningitis present with a normal or low temperature. Someone who has meningitis or septicaemia needs medical help urgently 15/02/2019 www.meningitis.org

A devastating disease Meningitis and Septicaemia... Can severely disable Can kill in hours Can affect anyone at any age Both meningitis and septicaemia are incredibly fast acting and devastating diseases. Part of the problem with these diseases is that they often present with flu like symptoms in the early stages. 15/02/2019 www.meningitis.org

What does Meningitis Research Foundation do? Meningitis Research Foundation fights for a world free from meningitis We fund pioneering research into the prevention, detection and improved treatment of meningitis and septicaemia We raise awareness amongst both the general public and health professionals. We support families who have had their lives changed through bereavement, or the mental or physical damage caused by meningitis and septicaemia Meningitis Research Foundation is an International charity with offices in the UK, Ireland and Africa. The Foundation’s vision is a world free from meningitis and septicaemia. The missions of our charity are to: To help fund research into the prevention, detection and improved treatment of meningitis and septicaemia Raise awareness into meningitis and septicaemia through awareness literature, education, and work with scientists and medical experts around the world Support families who have had their lives changed through bereavement, or the mental or physical damage caused by meningitis and septicaemia 15/02/2019 www.meningitis.org

Research There are currently 20 projects in MRF’s active research programme Since the charity was founded in in 1989 we have awarded 161 research grants Total investment is over £19.1 million We currently fund 20 research projects throughout the world Since we were founded in 1989, we have awarded 161 research grants, leading to many advances in the prevention, detection and treatment of meningitis and septicaemia. The total value of our investment in vital scientific research is over £19.1 million 15/02/2019 www.meningitis.org

Awareness We produce… MRF produces awareness literature for the general public and health professionals. This contributes to early recognition and treatment of the disease. Symptoms information is available for all ages and in a range of formats. If you would like to order any, please don’t hesitate to call us via our helpline and as I mentioned I have lots of literature with me today. 15/02/2019 www.meningitis.org

Information and Support Free Helpline 080 88 00 33 44 / helpline@meningitis.org Information about Symptoms Reassurance Vaccine information Extinguishing rumour and panic Support for those affected In the UK and Ireland we run a freefone helpline which people can use for symptoms information, reassurance, vaccine information and support. We run a befriending service - putting someone in touch with someone who has gone through a similar experience. We provide bereavement support – over the phone/home visits We provide information about follow up care. 15/02/2019 www.meningitis.org

Thank you THE KEY MESSAGES TO TAKE AWAY ARE THAT:   Early recognition saves lives No time to wait with this disease it’s fast It can strike at any age and at any time 15/02/2019 www.meningitis.org