Counting the Cost
Counting the Cost is a major campaign where we reveal the shocking lifelong costs of surviving meningitis and septicaemia and call on Government to pursue the widest and earliest implementation of vaccines to prevent the diseases.
Through Counting the Cost we call for:
- Government to pursue the widest and earliest possible implementation
of effective vaccines against all strains of meningitis and septicaemia
across the UK. There may soon be an opportunity to prevent MenB
(meningococcal group b disease) the leading cause of life-threatening
meningitis and septicaemia in UK children
- Government to change
its criteria for assessing the value of vaccination for meningitis and
septicaemia to include full medical costs, plus social and educational
costs of the disease.
Meningitis and septicaemia are illnesses that can have far-reaching
consequences for quality of life, creating ongoing need for specialist
medical care, and impacting on education, work, finances and family life.
Severe cases impose substantial financial costs on the state, as described in our case
notes. There are also significant costs to the families themselves: it
costs three times as much to raise a disabled child1, and families with a disabled child are four times as likely to be living in poverty2.
Read our paper published in Paediatric Drugs about Counting the Cost
- Dobson B, Middleton S. 1998. Paying to care: the cost of childhood disability. Joseph Rowntree Foundation.
- Emerson E, Hatton C. 2005. The socio-economic circumstance
of families supporting a child at risk of disability in Britain in 2002.
Institute for Health Research, Lancaster University.
Counting the Cost - the case studies
Counting the Cost provides a comprehensive analysis of the lifetime impact of the diseases through illustrative case studies:
who was 18 months old when he was struck down with septicaemia which
left him with multiple amputations and behavioural difficulties
Emma, who was three years old when she became ill with meningitis which left her brain damaged, deaf and partially blind
Counting the cost - how we worked it out
Cost benefit analysis is used to aid decisions on vaccination policy, and has become an increasingly important factor in reaching such decisions, however accurate cost of illness data is essential for this to be reliable.
At present there is little information in the UK about the direct and indirect lifetime costs associated with treating long-term sequelae of meningococcal disease and in particular, the costs of specialist rehabilitation for people disabled by their illness.
The work here identifies costs associated with a severe cases of meningococcal disease and bacterial meningitis and provides the basis for the Counting the Cost campaign.
Counting the cost: A severe case of meningococcal septicaemia
Counting the cost: A severe case of bacterial meningitis
The Counting the Cost petition
Robbie Jones is a MenB survivor. He lost both legs to the disease aged 23 months in 2008. His mum Gill backed our campaign to highlight the true cost of meningitis – which we estimate at around £3m for the lifelong care of each person seriously disabled.
With Robbie, she gathered hundreds of names for our Counting the Cost petition and they both helped deliver the petition of nearly 17,000 names to No 10 Downing Street on 17 September: “Robbie’s illness has been our worst nightmare
,” says Gill. “Which is why we committed ourselves to collecting signatures. We want to ensure everyone is aware of the dangers of the disease and that every child is protected against all types of meningitis and septicaemia.”Find out more about the petitionHow the government responded to our petition
Following our work uncovering the shocking lifelong costs associated with severe cases of meningococcal meningitis and septicaemia, we have been helping some of our European colleagues to undertake a similar exercise. A study in France has recently revealed that the cost of caring for survivors with severe disability such as amputations or brain damage over a lifetime can range from £3.4 to £4.6 million Euros, the majority which is paid for by National Health Insurance and publicly funded organisations. This figure is in line with findings from our UK study.
A scientific poster, below, about the study was presented at the ISPOR (International Society for Pharmacoeconomics and Outcomes Research) Annual European Congress held in Dublin from 2-6 November, where it received an award for the outstanding quality of the work.
The findings of this study will be used by Association Audrey, a French meningitis charity, to raise awareness of this disease and its devastating consequences.
MRF seeks to improve the outlook for people
affected by campaigning for early recognition, better treatment, and
comprehensive aftercare and support.
However, there are limits to
the improvements that can be achieved this way; only prevention through
immunisation can eliminate meningitis and septicaemia.
has been a tremendous success. It has virtually eliminated meningitis
and septicaemia due to meningococcal C and Hib (Haemophilus influenzae
b) infections, and greatly reduced pneumococcal meningitis.
there is a vaccine on the horizon against meningococcal B (MenB), for
decades the leading cause of life-threatening meningitis and septicaemia
in UK children. There may also be further opportunities to prevent
death and disability through wider use of new and existing vaccines.
has been an increasing focus on cost-effectiveness when considering new
vaccines – only those that pass stringent evaluation of cost-benefit
However, even the purely medical costs for those
severely affected by meningitis and septicaemia are underestimated
because of the lack of published cost of illness data. Moreover, the
cost-benefit analyses that underpin the introduction of new vaccines do
not consider the full medical, educational and societal costs of the
The existing system for evaluating vaccines focuses on
costs to the NHS rather than a wider societal perspective. Vaccines can
alleviate a lifelong burden on carers, prevent loss of earnings in those
affected, and save major costs to the state, due to educational and welfare needs as well as medical needs.
Living with the after effects
Diana Man was part of our team who delivered the Counting the Cost petition to Downing Street.
Thirty year old Diana, is a keen equestrian and reported on last year's paralympics. She is building a new life without her lower legs, her fingers and with epilepsy
A former record-breaking hurdler, she became ill in November 2007 but
refuses to let her disabilities hold her back. “My life has changed a
great deal, but I have learned to manage just like anyone else. The
journey I have been through, and many of the people I have met, have
taught me a lot about myself. There is always someone worse off.”Read Diana's story in full