1. MRF Meningitis Symposium Bristol 16 June 2011 Counting The Costs of MeningitisClaire Wright, Rebecca Wordsworth, Linda Glennie

2. “Gold that buys health can never be ill spent ” ~Thomas Dekker, 1604

3. Methodology Costing exercise Illustrates the costs to the state of caring for survivors with severe after effects due to meningitis and septicaemia We achieved this by: Face to face and telephone interviews with MRF members Detailed meetings and interviews with health care and educational professionals Consultation with Casemix Service at NHS Information Centre and data standards team at NHS Connecting for Health Project launch in spring 2011

4. Case Study Meningitis Septicaemia Peter was hospitalised with Meningococcal septicaemia aged 12 months Bilateral above knee leg amputations Amputation of one arm below the elbow Skin scarring over 60% of the body Behavioural problems Emma was hospitalised with meningitis aged 3 Insertion of shunt Severe brain damage Profound deafness Severe hemiplegia Loss of vision Epilepsy Incontinence

5. Medical costs Meningitis Septicaemia Acute costs 26 days PICU, Shunt insertion operation and 155 days on rehabilitation ward Outpatient appointments Paediatricians, neurologists, neuro-surgeons, orthotist, opthalmologist, occupational therapists, physio-therapists, speech and language therapists, hydrotherapy Epilepsy management Cochlear implantation Shunt revision surgery Specialist equipment Acute costs 31 days in PICU, amputation operations, dressing changes and debridement procedures, multiple skin graft operations, 155 days on paediatric ward Outpatient appointments Prosthetists, occupational therapists, physiotherapists, plastic surgeon, orthopaedic surgeon, paediatricians, CAMHS Behavioural management Prosthetic provision Corrective surgery Specialist equipment £951,922 £612,087

6. Educational costs Meningitis Septicaemia Peter has SEN statement School adaptations/equipment Learning support assistant Nursery and school (until 13) Help with physio at school and personal assistance Free transport to and from school Emma has SEN statement Issue and annual review – multiprofessional input Special educational needs nursery age 4 Maintained special needs school age 5 to 19 Free transport to and from school £238,245 £206,769

7. Social costs Meningitis Septicaemia Direct Disabled facilities grant, government specialised vehicle fund, direct payments for home help, disabled students allowance Indirect Tax revenue from one parent becoming carer and Peter’s restricted job opportunities Benefit payments Carers allowance, extra child tax credits, DLA, working tax credits, housing benefit, council tax benefit, pension credit Direct Disabled facilities grant, government specialised vehicle fund, social care assessment and review, direct payments for home help, short break provision, residential home from age 40 Indirect Tax revenue from one parent becoming carer and Emma’s potential job Benefit payments Carers allowance, extra child tax credits, DLA £2,657,332 £1,674,683

8. Other considerations Day to day costs to the family are three times more compared to a family with a non-disabled child Minimum budget to bring up disabled child £7,355 per year Minumum budget to bring up non-disabled child £2,100 per year (Joseph Rowntree Foundation, 1998) Families are 4 times more likely to be living in poverty 84% of mothers of disabled children do not work compared to 39% of mothers of non disabled children (New Philanthropy Capital, 2007) Impact on third parties Siblings of disabled children are more likely to experience behavioural and emotional problems (New Phil. Cap., 2007) Depression and anxiety more common among other family members (New Phil. Cap., 2007)

9. Cost summary

10. The bigger picture MRF estimate around 3,300 people get bacterial meningitis and septicaemia in the UK and Republic of Ireland every year 25% of survivors live with life altering after effects (Grimwood et al. Pediatrics 1995) Sequelae 3% growth plate damage (NICE Clinical Guideline 2010) 3% amputations (NICE Clinical Guideline 2010) 13% skin damage (NICE Clinical Guideline 2010) 10.5% (4-15% range) hearing loss (Barraff et al, Pediatr. Inf. dis. J., 1993) 14% neurological deficits (Chandran et al, Pediatr. In.f dis. J., 2010) Subtle after effects Healthy survivors of meningitis pass significantly fewer GCSE’s than controls (de Louvois et al, Arch. Dis. Child., 2007) Educational support has been shown to be lacking. Is this cost passed on to society via reduced potential?

11. Sign the Petition Meningitis Research Foundation calls 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.

12. “Prevention is better than cure”