The science of saving lives for 25 years
It’s Meningitis Research Foundation's 25th anniversary in 2014. Read about our story so far and the challenges which lie ahead.
The Science of Saving Lives for 25 Years Itâ€™s our 25th anniversary. Read about our story so far and the challenges which lie ahead. 1 www.meningitis.org Making a difference for 25 years Meningitis Research Foundation is the UK and Ireland’s leading meningitis charity. We have been fighting meningitis and septicaemia since 1989 and have helped halve the number of deaths in that time. The recent news about the meningococcal meningitis group B (MenB) vaccine in the UK is a good example of how we make a difference. Thanks to our members, medical professionals and researchers, we have successfully campaigned to get this life-saving vaccine recommended in the UK childhood immunisation schedule. It’s a wonderful achievement after years of hard work with supporters fundraising, signing petitions, sharing personal experiences in the media and participating in research projects. We are hopeful Ireland will recommend it too. But the sad fact is meningitis still kills over 1,000 people around the world every single day. Tens of thousands more are left with life-long disabilities. Small children and young adults are especially vulnerable, but people of any age can be affected. Christopher Head, CEO Meningitis Research Foundation None of our work would have been possible without our supporters and their amazing fundraising. It’s thanks to them we have been able to change the landscape of meningitis in the UK and Ireland. And it’s their ongoing support which will ensure we can share the expertise we’ve built up over 25 years with millions more around the world. Our vision is a world free from meningitis and septicaemia. We believe no one should die of a vaccine preventable disease and we have invested millions in vital medical research to safeguard children and adults from unnecessary death and disability. nW e fund research projects around the world to identify and evaluate vaccines and to redefine the treatment and management of the diseases nO ur medical guidelines are endorsed by health professional associations and distributed free of charge to teams in A&E, critical care and community medicine nO ur award winning public information is freely available. We believe that until everyone is protected, it is vital people know the signs and symptoms of the disease and understand how important it is to get medical help fast 2 The Science of Saving Lives for 25 Years The personal cost of meningitis At the heart of what we do is a deep understanding of the impact of meningitis and septicaemia, drawn from personal experiences. Helping people through the trauma of meningitis is a major part of our work. nO ur Helpline is available for information and nO ur befriending service puts people in touch with others who have had similar experiences nO ur members’ days bring people together from all over the country to share their stories nO ur informative leaflets, like the recently produced ‘Your Guide’, give parents an idea what to expect when they take their child home from hospital support 365 days a year Nearly 400 families have shared their experiences with us and you can see them online at meningitis.org/book-of-experience Here are some of the personal stories which inspire our work. Robbie Jones contracted MenB when he was 23 months old in 2008. His legs and finger ends were amputated. We contacted the family to offer support. Mum Jill says: “We are always happy to help Meningitis Research Foundation. They have helped us in so many ways and we don’t want other families to go through what we have been through. “Since working with the charity we have visited 10 Downing Street, handing in the MenB Counting the Cost petition, and shared Robbie’s story on ITVs Daybreak programme. We also attended the charity’s special day for amputee children at Alder Hey Hospital in Liverpool and as a direct result of that, Robbie now has a new consultant at the Preston Limb Centre. He has just received his first set of limbs from the centre and is doing very well.” Ryan Sweatman was away at Sheffield University when he became ill. Gina Weston, Ryan’s mother said: “Meningitis has struck our family twice. My baby son Joe died of meningitis when he was seven weeks old in 1991 and then 21 years later in January 2011 my 19 year old son Ryan died of Group B meningococcal septicaemia. He was found in his bed in halls of residence having fallen ill during the night. His death has devastated all of us.” Vivienne Bell was 56 years old when she contracted Group B meningococcal septicaemia in May 2008. “The doctor said I was 97 per cent dead when I was taken to hospital, I was in a coma for 12 weeks and Intensive Care for 13 weeks and as a result I lost both legs from the knee down as well as my fingers and the use of one hand.” Kathleen Hawkins was 18 years old when she contracted Group B meningococcal septicaemia in her first term at university. “I collapsed in my flat and my flatmates called an ambulance. I spent four months in hospital and had to have both legs amputated and was on kidney dialysis.” 3 www.meningitis.org Prevention is our ultimate goal Advances in genomics will aid future progress Meningitis develops so rapidly and is so very difficult to diagnose, we passionately believe prevention through vaccination is the ultimate solution. In the UK and Ireland there has been a dramatic drop in cases of MenC, Hib and Pneumococcal meningitis since vaccines against these types were introduced in 1992, 1999 and 2006. We believe further effective vaccines can be introduced to save even more lives from other forms of meningitis over the next 25 years. We are pleased to have contributed towards the success of current vaccines; continued funding for new vaccine research is central to our future plans. We are already helping scientists to evaluate existing vaccines and develop new ones with the worldâ€™s first Meningococcal Genome Library, which we launched online in 2012. A collaboration between us, Public Health England, Wellcome Trust Sanger Institute and the University of Oxford, it provides a complete genetic blueprint of all meningococcal bacteria isolated as a cause of illness in England, Wales, Scotland and Northern Ireland from 2010 â€“ 2013. Professor Martin Maiden and researchers using our Meningococcal Genome Library at the University of Oxford. Professor Lee H. Harrison, University of Pittsburgh The availability of whole genome sequences from an entire epidemiologic year is unprecedented... in addition to investigating vaccine targets, researchers will be able to investigate meningococcal molecular epidemiology, genetics and evolution. I anticipate substantial scientific advances as a result of the Library. 4 The Science of Saving Lives for 25 Years We believe research is key We firmly believe meningitis and septicaemia will ultimately be defeated through research. That’s why we have supported 140 projects since 1989. Working with our panel of scientific and medical experts, we have always focused on projects of outstanding scientific value. Although much of our research has been vaccine-related, other studies have looked at treatment pathways and at the impact on survivors. Many of the world’s leading meningitis research institutions have received funding from us. In the UK and Ireland they include: Imperial College, London; the Institute of Child Health at University College London; the National Institute for Biological Standards Control; Public Health England’s Vaccine Evaluation Unit in Manchester; St George’s University of London; Trinity College, Dublin; University of Cardiff; University of Liverpool; University of Oxford and University of Sheffield. Globally we have funded projects at: University of Auckland; Agence de Médecine Préventive, Burkina Faso; the Navrongo Health Research Centre, Ghana; Centre of Vaccine Development, Mali; University of Malawi; University Medical Centre, Utrecht, The Netherlands; the Swiss Tropical Institute, Switzerland; the Togolese National Institute of Hygiene and Harvard University in the USA. And we encourage knowledge sharing by bringing together the world’s leading meningitis experts at our regular international conferences held at the Royal Society of Medicine in London. It’s currently also available privately. Our work has helped ensure it is now recommended for immunising infants free of charge, via the NHS in the UK. However, the introduction of a new vaccine still leaves a lot to do, so our work on MenB is ongoing. We need to monitor the vaccine’s introduction, support parents and health professionals as it’s rolled out, evaluate its impact and assess other vaccines entering the market. Meantime, a reminder of our MenB work. nI n 2011 we launched our Counting the Cost study, an extensive investigation into the financial impact of MenB disease. We concluded the lifetime costs of caring for someone severely disabled by the disease is £3m - £4.5m. We shared our findings and other evidence with the UK’s Department of Health and its advisers n1 ,600 of our members took part in a study about the impact of MenB on families nW e also launched our Counting the Cost campaign with members, supporters and the public, submitting two petitions with over 50,000 names to the UK Government, publicising MenB cases in the media and engaging directly with MPs and Ministers nI n September 2013 we submitted a detailed response to the expert committee which makes recommendations to the UK Government, the Joint Committee on Vaccine and Immunisation nO ur information proved so useful it‘s been published in France and Spain for campaigning in these countries How the costs of meningitis stack up MenB Peter was rushed to hospital in January 2010 with Peter’s Story Counting the Cost of MenB Our expertise has been pivotal in the campaign for a vaccine against this deadly infection which kills more young children than any other in the UK and is most feared by parents and doctors alike. There is a licensed vaccine available free of charge to those in high risk groups in the UK and Ireland because of their existing medical conditions. Hospital care £157,000 Specialist medical aftercare £800,000 Government, education and social care costs £2,082,000 Total estimated lifelong costs to age 70 £3,039,000 5 www.meningitis.org Global projects Based in the Blantyre region, it uses mobile phone technology to aid diagnosis and speed up transfer to hospital. We have adapted the World Health Organizationâ€™s early triage programme and developed a traffic light approach to diagnosis. We have created a character called CHIP to explain the process: Emergency (E) Priority (P) and Queue (Q). CHIP appears in official health documents and on posters at the clinics â€“ a vital visual aid for a country where literacy rates are low. Parents with sick children waiting patiently at a health clinic in Malawi. A child could be dying in the queue and nobody would know. Our vision is a world free from meningitis and septicaemia. Globally itâ€™s estimated up to 5% of all child deaths are caused by bacterial meningitis - and those are the ones we know about. There are large gaps in our knowledge because there is little statistical information about the disease burden outside the developed world. What we do know, from our own research, is that meningitis is often missed or misdiagnosed for other illnesses like malaria. Much work needs to be done to improve treatment by educating doctors and nurses. We also need to raise awareness of the symptoms and help parents seek medical help fast. We have always funded the best scientists wherever they are in the world. We have been inspired by the MenAfriVac immunisation programme against meningococcal A meningitis (MenA) in parts of Sub Saharan Africa, where epidemics used to kill up to 250,000 people a year. We are funding research to establish how long-lasting the protection from MenAfriVac will be. But we believe more health intervention is desperately needed in Africa to break the vicious cycle of disease. Working with local partners we have launched a health intervention project in Malawi, called Action Meningitis. We have also provided ambulance bikes for remote villages to transport the seriously ill and worked with the Malawi state broadcaster to spread awareness of the disease and its symptoms. Over 160,000 children have been triaged since we launched Action Meningitis in October 2012 and the project will inform our life saving work in other countries. Read more at meningitis.org/action-meningitis Kanny is deaf and has learning difficulties. Meningitis struck his family when he was six years old. His younger sister Zione, aged three, had been rushed to hospital with meningitis, but when his dad returned home he found Kanny very ill. They walked 4km to a medical centre and then spent 13 days in hospital. Kanny lost his hearing and Zione now tires easily. Their elder brother Yusuf, aged 12, also fell ill while Kanny was in hospital and died before reaching help. Edith was two years old when she became ill. Her parents rushed her to the nearest medical centre but meningitis was misdiagnosed as malaria. It was three days before Edith was referred to hospital where she had major surgery and stayed 10 days. Edith is now blind, deaf and unable to sit upright - a tragic outcome in a country ill equipped to manage disability. She spends much of her time propped up in a hard wooden chair. 6 The Science of Saving Lives for 25 Years Recognised and trusted expertise Our expertise in meningitis and septicaemia has been built up over 25 years. It’s why we are trusted by governments and professional organisations to inform the public and educate health professionals; the doctors, nurses and healthcare assistants on the frontline in the fight against meningitis and septicaemia every day. We use a wide range of materials to promote awareness and information from real life experiences shared online in words and on film, to symptoms cards, leaflets and posters. A new video with our Patron, TV’s Dr Hilary Jones outlining the symptoms, has just been launched. nW e have information online at meningitis.org nT he Association of Medical Research Charities (AMRC) and the National Institute for Health Research (NIHR) trust us to fund research of the highest quality, while the Helplines Partnership and the Mentoring and Befriending Foundation recognise the excellence of the support we give to people affected nR ecently we have been trusted by over 330 health professionals to get their view of a MenB vaccine to the Secretary of State for Health. We sent the open letter on behalf of Dr Simon Nadel, Consultant Paediatric Intensivist at St Mary’s Hospital, London and have published it with all the names online nW e have just inaugurated a Medical Advisory Group so we can gain more insights from leading health professionals and develop more ways to support those already affected rd_A ug ng 12_e +wal es ca /08/ rd 30 2013 13:35 Page 1 FINAL _eng +wal es ca Menin git pto is sym ms of Dislike lights bright ol Brist 1811 454 28 rg Tel 01 ningitis.o me info@ 1105 No. 109 Way Charity Reg. Midland 2BS 5 Office: Reg. tol BS3 ury Bris ch Resear ningitis 09/2013 © Me tion Founda k Stiff nec iting hea Severe dache vom Fever/ Thornb Seizur Rash t/ /vacan sleepy wake Ver y lt to dif ficu ed/ Confus us delirio es Free *From help fone* landline s and most 00 80 88 line 0 3344 www.men .org ingitis mobiles and provide support and information under our umbrella brand MeningitisWise, which includes a helpline and an iphone app. Our scientific and healthcare presentations are in the top 1% of similar sites viewed globally nT he NHS and the National Institute for Health and Care Excellence (NICE) are among the health organisations which recognise the value of our information. Staff in accident and emergency departments and intensive care units for children use our information, which is widely endorsed by leading medical organisations including the Royal College of General Practitioners, the Irish College of General Practitioners, the Royal College of Nursing, the Irish Nurses and Midwives Organisation and the Royal College of Paediatrics and Child Health 7 www.meningitis.org The gift of giving Our ability to deliver life-saving work over 25 years is due first and foremost to the wonderful individual fundraising of our members and supporters. Hundreds of thousands of pounds are raised each year by people organising events, challenging themselves in extreme activities or fundraising in recognition of loved ones - those who have been bereaved as well as those who care for survivors. Increasingly we have also benefited from strategic relationships with organisations and companies sympathetic to our aims who are able to organise large group activities like student trips and extraordinary experiences. We receive support from business of all sizes who make us their charity of the year, from Deutsche Bank to National Mobile Windscreens. Other funders include the UKâ€™s Department of Health, Irish Aid, Lloyds TSB Foundation and the Scottish Government, who all provide grants for specific projects. Partnerships provide us with specialist expertise - for example the legal firm Clarke Willmott - and many of our suppliers give us special rates because they appreciate the value of our work. Our vision is a world free from meningitis and septicaemia and with your help we can make it happen. We aim to invest at least 75p of every pound raised in research and information. The diagram represents our overall performance since 1989. For our latest accounts please visit meningitis.org/about-us If you have been inspired to support us please contact your local office or sign up to fundraise via our online site, where you can also make a donation. Our offices Bristol Tel 01454 281811 firstname.lastname@example.org Belfast Tel 028 9032 1283 email@example.com Dublin Tel 01 819 6931 firstname.lastname@example.org Edinburgh Tel 0131 510 2345 email@example.com A charity registered in England and Wales no 1091105, in Scotland no SC037586 and in Ireland CHY 12030 Registered Office: Midland Way Thornbury Bristol BS35 2BS ÂŠ Meningitis Research Foundation 04/2014 Photograph credits: Andy Skinner, Giulietta Verdon-Roe, Matthew Feldman 8