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.

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.

Read our paper published in Paediatric Drugs about Counting the Cost

Counting the Cost - the case studies

Counting the Cost provides a comprehensive analysis of the lifetime impact of the diseases through illustrative case studies:

Peter, 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 petition

How the government responded to our petition

Why prevention?

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.

Immunisation 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.

Now 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.

There has been an increasing focus on cost-effectiveness when considering new vaccines – only those that pass stringent evaluation of cost-benefit are introduced.

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 diseases.

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