History of the Foundation
Meningitis Research Foundation: A Brief History
Meningitis Research Foundation funds research to prevent meningitis and septicaemia, and to improve survival rates and outcomes.
While research continues to seek solutions, the charity promotes public awareness of meningitis and septicaemia and produces tailored information and educational resources for the public and health professionals, backed by an accredited helpline and website.
We offer support and befriending to people affected by meningitis and septicaemia, through the Freefone 24 hour helpline.
All Meningitis Research Foundation's activities are freely given and we rely on the generosity of the public to fund our work.
These are a few highlights from our history.
1989 - 96
Meningitis Research Foundation was established as a registered charity in May 1989 by bereaved parents (under its original name of Meningitis Research Appeal). In 1990, we began funding scientific research with three grants totalling £49,000. Soon after we began to promote public awareness of symptoms, and to give support to families affected. Membership of the charity is free and is offered to individuals and families who have experienced meningitis and/or septicaemia.
In 1992, we opened the Northern Ireland office, introduced the home support visit service, and moved from an office hours helpline to a 24 hour service.
In 1993, we opened our Scotland office and launched Meningitis, A Race Against Time , the first UK public awareness initiative to point out the different symptoms of meningitis and septicaemia - the blood poisoning form of the disease.
The UK Meningitis Blood Survey commenced in 1995, undertaken by scientists at St Mary's Hospital, London and involving members of the Foundation. Funded by the charity, the project investigated whether inherited factors conferred susceptibility to meningitis and septicaemia. A number of findings have resulted over the years, including the knowledge that while genetic factors do contribute to increased risk, other factors are also important. This work won the Astra Zeneca prize for best oral presentation in 2003.
In 1996, we opened our Republic of Ireland office and launched the first UK public campaign to identify a septicaemic rash - the Tumbler Test. The British Medical Association and the Royal College of General Practitioners endorsed the materials used in the campaign, and it was credited with helping to save fifteen lives in its first year.
1997
A groundbreaking, nationwide research study into health care delivery for children with meningococcal disease began, funded by the Foundation with support from the Community Fund. The study started to report findings in 2001, and has since changed the face of diagnosis and treatment.
Young people are at higher risk of getting meningitis and septicaemia than the general public. The award winning Meningitis, Get it Sussed campaign was launched to alert young adults to the symptoms, and demonstrate the Tumbler Test. Five families contacted the Foundation to say the campaign had saved their child's life.
We also began supporting two major research projects to discover why adolescents are at increased risk. Ground-breaking findings from the two studies were reported in 2000 and 2006, showing factors that increased risk and reinforcing the need for vaccination and symptoms awareness in this group.
1998
We were named Patient Association of the Year at Pharmaceutical Marketing's Communiqué Awards, and two projects in the charity's research programme were featured on BBC 1's Tomorrow's World programme. With funding from the research charity Remedi and the Foundation, researchers evaluated a meningococcal Group B (MenB) vaccine in use in Cuba, to establish its suitability for the UK population. This important study found that the vaccine was not effective against most of the sub-strains circulating in the UK.
Publicising good practice saves lives. Doctors at St Mary's Hospital, London had achieved a reduction in the death rate from meningococcal disease from 29% to 2% over six years. From the lessons they learned, a treatment protocol was developed, with charity funding, which we published and have since regularly distributed to hospitals in the UK and elsewhere.
1999
With support from Dyson Ltd, and patrons, including David and Victoria Beckham, Gareth Hale and Norman Pace, Phil Collins and Ewan McGregor, the charity achieved a 57% increase in income in this 10th anniversary year.
In July, the UK Government announced the implementation of a new vaccine against Group C meningococcal disease (MenC). The Foundation's helpline team worked closely with the Department of Health, vaccine manufacturers and health professionals to provide up-to-date information to the public and health professionals on the vaccine and the immunisation programme.
In September, patrons Victoria Beckham and Dr Hilary Jones launched Meningitis Baby Watch. The launch of this resource for the parents and other carers of babies and small children, was supported by the Community Practitioners' and Health Visitors' Association. Meningitis Baby Watch has won several awards, and a number of parents credit the card with saving their child's life.
2000
Meningitis and septicaemia have devastating effects on families. Recognising the value of talking to someone who has been through a similar experience, the Foundation launched a nationwide telephone-befriending programme, with a grant from Children in Need. Specially trained volunteers offer support to people coming to terms with the loss of a loved one or the after effects of the diseases.
In October, the MenC vaccine was brought into use in the Republic of Ireland. The Foundation worked closely with the Office for Health Gain and gave information to the public through the 24 hour helpline.
The Foundation won the Patient Association of the Year award for the second time, and was short-listed in the Charity Awards for Excellence in Charity Management.
2001
The uncontrolled blood clotting that occurs in some patients with meningococcal septicaemia often has a fatal result. Scientists at Imperial College, London, funded by the Foundation with support from the Community Fund, made a breakthrough in understanding when they identified the cause as a lack of Activated Protein C. This important finding won the prestigious Lorber Prize, and provided the scientific basis for exploring new life saving treatments.
A new booklet for General Practitioners, Meningococcal Meningitis and Septicaemia - Diagnosis and Treatment in General Practice, was launched, endorsed by the British Medical Association and Irish College of General Practitioners.
Holly's Story , a resource for health professionals working with parents and other carers of young children, was produced and subsequently short-listed in the IVCA awards.
2002
The MenC vaccine has provided thorough protection for those age groups vaccinated. However, concerns remained about how well the vaccine worked with premature babies. With funding from the Foundation, researchers at Portsmouth Hospitals NHS Trust proved that the vaccine provided the same, high level of protection for premature babies as for those born full-term.
New materials for health professionals, all endorsed by their relevant professional associations, were developed, produced and distributed. These were Vital Signs for Frontline Nurses, a protocol for ambulance personnel, and a hospital protocol for adults.
Professor George Griffin became chairman of the Foundation's Scientific Advisory Panel.
The charity's Freefone 24 hour helpline was one of the first charity helplines to attain the Telephone Helpline Association's new Quality Standard, and remains the only meningitis helpline with this prestigious accreditation.
2003
Regular epidemics of meningitis kill thousands of people in Africa's 'meningitis belt'. Backed by the Foundation, Liverpool School of Tropical Medicine built a model to predict when epidemics would strike, enabling prevention and treatment strategies to be put in place to save lives.
A new leaflet for parents and other carers of toddlers, Meningitis Tot Watch, was developed, and was a key part of the highly successful integrated awareness and fundraising campaign for nurseries, Make Music with Marvin . The campaign was Highly Commended in the Charity Awards.
Almost 200 delegates, made up of experts in critical care, infectious diseases, epidemiology and molecular medicine from both adult and paediatric settings, attended the Foundation's two-day conference Meningitis and Septicaemia in Children and Adults.
2004
Researchers at St Mary's Hospital, London, funded by the charity, identified the cause of heart failure in meningococcal disease, and proposed that a drug that blocks this effect, which is already used for other conditions, could save the lives of patients with meningococcal septicaemia.
The Foundation developed, published and distributed a handbook for junior doctors, Lessons from Research for Doctors in Training . The handbook drew on actual case studies identified during the health care delivery study, and was endorsed by the Royal College of Paediatrics and Child Health.
Foundation-funded research into Group B Streptococcal disease, the most common form of meningitis in newborn babies, was published, contributing to the development of Royal College of Obstetrics and Gynaecology guidelines on prevention strategies.
The Foundation won a Community Support Programme award for our Get it Sussed work with students and young adults in the Republic of Ireland, and Judy Tomlinson, a charity member, won Best Fundraiser in the national Marks and Spencer Volunteer Awards.
2005
Beverley Pace became Chair of the Trustees. Beverley has been a member of the charity since 1992 following the illness of her daughter.
Vital signs, Vital issues , a booklet for nurses working in the community was developed, produced and distributed, endorsed by the Royal College of Nursing and the Irish Nurses Organisation.
The Foundation's 2005 scientific conference Meningitis and Septicaemia in Children and Adults: Burden of Illness, Management and Prospects for Prevention , attracted delegates and speakers from all over the world.
The first publication from the healthcare delivery study showed that lack of specialist paediatric care, failures in supervision, and failure to aggressively treat children in line with the Foundation's treatment protocol contributed to child deaths from meningococcal disease. This was to have far-reaching repercussions, and influenced the NICE feverish illness in children guideline published in 2007.
2006
A national Foundation-funded study at Imperial College, London showed that children who recover well from meningitis in infancy nevertheless need educational support because they do not achieve as well at GSCE level as their peers.
Findings from a project funded at the Nottingham Paediatric Cochlear Implant Programme into the use of cochlear implantation in children deafened by meningitis emphasised the importance of early assessment and follow up.
The Republic of Ireland 24 hour helpline changed from LoCall to a Freefone number.
We supported the introduction of pneumococcal vaccine and a MenC/Hib booster into the UK childhood immunisation programme. In the Republic of Ireland we welcomed the news that the National Immunisation Advisory Committee recommended the pneumococcal vaccine for introduction into the immunisation programme (expected in 2008).
Over 600,000 unique visitors accessed information from our world-renowned website during the year. The site is accredited by Health on the Net.
The Foundation was awarded the Association of Medical Research Charities' Certificate of Best Practice in Peer Review, for our research administration procedures.
Findings from the healthcare delivery study identified key early warning symptoms the 'red flag' symptoms, which could lead to earlier recognition of meningitis and septicaemia. The study also highlighted the need for doctors to systematically look for those symptoms in sick children. These findings were incorporated into the Foundation's materials and used as the basis for the charity's public awareness campaign, as knowing this information could save lives.
2007
Information, reassurance and support are always available from the Freefone 24 hour helpline service, which continues to hold the Quality Standard. Our telephone befriending programme now has over 140 trained volunteer befrienders, and has Approved Provider Standard from the Mentoring and Befriending Foundation - a government accreditation.
To 31 March 2007, the charity has awarded 118 research grants, leading to many advances in the prevention, detection and treatment of meningitis and septicaemia. The total value of the Foundation's investment in vital scientific research is nearly £13 million/over €19 milion.
We have 18 research-active projects, with current and future research grant commitments of £1.1/€1.54 million. The trustees have always given priority to ending Group B meningococcal disease in the research strategy, and projects we are currently funding in this area look very promising. These include a collaboration with the Department of Health and industry to support Health Protection Agency trials of candidate MenB vaccines, and work to standardise the methods used to evaluate candidates in the laboratory setting.
Our range of educational and information resources, developed with experts in the respective fields, are available free of charge. Current materials are listed in the Resource Centre .
Meningitis Research Foundation was thrilled to win in the Patient and Public Involvement category of the AMRC 2007 Science Communication Award, and to win Pharmaceutical Marketing's Communiqué Award for Patient Association of the Year for the third time in ten years.
Page last updated 30.08.07