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North West London Haemoglobinopathy Managed Clinical Network

North West London Haemoglobinopathy Managed Clinical Network. Lola Oni Professional Services Director/ Lecturer Brent Sickle Cell & Thalassaemia Centre Making a difference: service models and care pathways for babies with disease states. Perceptions of Risk. Guardian Newspaper May 1998.

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North West London Haemoglobinopathy Managed Clinical Network

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  1. North West London Haemoglobinopathy Managed Clinical Network Lola Oni Professional Services Director/ Lecturer Brent Sickle Cell & Thalassaemia Centre Making a difference: service models and care pathways for babies with disease states

  2. Perceptions of Risk Guardian Newspaper May 1998

  3. Sickle Cell Disorders In Children Complications rarely occur before 3 months of age. Infrequent before 6 months of age. 1/3 of children develop symptoms by 1st birthday. 2/3 of children develop symptoms by 2nd birthday. 10% risk of stroke in children with HbSS.

  4. NHS PLAN (ENGLAND) “…effective and appropriate screening programmes for women and children including a nationally linked ante-naral and neonatal screening programme for haemoglobinopathy and sickle cell disease” (DoH 2000:109)

  5. Newborn Screening for sickle cell disease in England Aim of newborn screening for sickle cell disease: To implement health care early in order to reduce handicap, mortality and morbidity associated with sickle cell disease

  6. Blood spot at 5 – 8 days of age

  7. NW London Network - PCTs • Brent • Ealing • Kensington & Chelsea • Hammersmith & Fulham • Harrow • Hillingdon • Hounslow • Westminster

  8. Outer LondonPCTs • Bedfordshire • North & East Hertfordshire

  9. Nursing Model 1 Brent PCT • All local HVs give normal results • BSCTC provide carrier results • BSCTC re-tests all unknown bands and babies with a suspected disease state • Follow up all children and adults with a disease state in acute and community

  10. Nursing Model 2 Hounslow, H & F, Ealing PCT This will be covered by: - Emma Quarshie, Hounslow PCT - Cherril Ward, H & F PCT - Brigid Offley-Shaw, Ealing PCT

  11. Nursing Model 3 Harrow, K & C PCT • All local HVs give normal results • Designated local HVs give carrier results • BSCTC re-tests all unknown bands and babies with a suspected disease state • Follow up all children via local paediatric clinic

  12. Nursing Model 4 Westminster PCT • All local HVs give normal and carrier results • BSCTC re-tests all unknown bands and babies with a suspected disease state • Follow up all children via local paediatric clinic

  13. Penicillin prophylaxis • Randomised controlled trial (Gaston et al 1986) • Penicillin V reduces the mortality from pneumococcal sepsis in children with SCD • Incidence of pneumococcal infection reduces after 5 years • Therefore concentrate on early compliance (give appropriate dose twice a day) • Lifelong treatment is recommended

  14. UK Forum Sickle Cell Paediatric Care Guidelines Summary 2005 4 key audit standards • Penicillin prophylaxis (90% by 3/12, 99% by 6/12) • Pneumococcal immunisation (95% at 2 yrs) • Transcranial Doppler scanning annually from 3 years of age (90% by 2008, 99% by 2010) • Failsafe arrangements for DNA (95% by 2008, 99% by 2010)

  15. Transcranial Doppler measurement of cerebral blood flow Fast flow predicts brain damage

  16. Management of SCD • Prophylactic Penicillin • Folic Acid • Immunisation against pneumococcal infections (Prevenar with primary immunisations at 2; 3; 4 months. Pneumovax at 2 years) • Parental Education • Symptomatic Treatment

  17. Care Pathway - Summary • Newborn identification • Parent notification, education, provision of parent handbook community support, • Commencement of prophylactic penicillin • Referral for paediatric care • Transcranial Doppler annually • Follow up of DNA • Pneumovax

  18. UK THALASSAEMIA SOCIETY2005 • Standard1:Effective management of iron load - family education, monitoring and treatment of complications • Standard 2: Psycho-social management and support strategy • Standard 3:Effective management of an acute illness on presentation to primary or secondary care

  19. Acknowledgements Graphics: • Professor Sally C Davies, consultant haematologist • Cynthia Gill, independent practitioner

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