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Clinical Haemoglobinopathies A commissioning perspective

Clinical Haemoglobinopathies A commissioning perspective. Sue Mather Specialised Commissioning Team North-West England November 2008. Introduction. I am … Commissioning Specialised Services (NW England) Previous form – Cardiac Services; Renal Services Inherited Conditions

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Clinical Haemoglobinopathies A commissioning perspective

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  1. Clinical HaemoglobinopathiesA commissioning perspective Sue Mather Specialised Commissioning Team North-West England November 2008

  2. Introduction • I am … • Commissioning Specialised Services (NW England) • Previous form – Cardiac Services; Renal Services • Inherited Conditions • Medical Genetics Haemoglobinopathies • Specialised Metabolics Cleft Lip and Palate • Haemophilia AN/NB Screening (from 2003) • National Definitions Set • Julia Stallibrass, Rob Couch and me

  3. HbO • UK HbO population • 12,500 Sickle Cell Disease patients • 700 Thalassaemia patients • London • 75% - 80% of HbO population • Therefore - rest of the country = 20% - 25% • West Midlands • East Midlands ) • North West )

  4. North West England • Local areas of HbO population • Sickle Cell Disease • Manchester • Liverpool • Thalassaemia • East Lancashire • Oldham; Rochdale • National Patient Register

  5. Specialised Commissioning • 10 SHAs / 10 SCGs • North West SCT / NW SHA footprint • 24 PCTs • Former Cheshire & Merseyside; Cumbria & Lancashire; Greater Manchester • SCG is sub-committee of all 24 PCTs • Role • Champion Services Independent • Honest Broker • Funding from DH to PCTs • PCTs → SCG no separate funding

  6. Review of Commissioning Specialised Services (CarterReport – May 2006) • 32 Recommendations • Review of SSNDS (No. 22) • Devolving services to PCTs • Pathology Hyperbaric Oxygen • HIV Common Cancers? • Cardiology? Neurology? • Renal Dialysis? NNIC? • New Definitions • HbO Specialised Metabolics • Specialised Ophthalmology

  7. Review of Commissioning Specialised Services (CarterReport – May 2006) • Designation of Service providers (No. 17) • SCGs to formally designate service providers • “Activity at undesignated providers should not be funded by commissioners” • Commissioning Screening Services (No. 7) • “Collaborative commissioning arrangements for screening programmes should be integrated with the commissioning arrangements for specialised services” • Antenatal/newborn programmes, e.g. SCD, Thalassaemia

  8. National HbO Patient Register • Low volume patient population (NW) • Holistic approach • “Identify” patient (Initials; age group; SK7 postcode) • Target PCTs (long-term conditions group) • Target NHS Trusts (local emergency cover; shared care; Obs & Gynae) • Other PCT/NHS Trusts (for information) • Patient groups / Voluntary Organisations • Non-healthcare • Local Authorities (Education; Social Services) • Universities

  9. Difficulties • Silo working • Poor understanding of disease impact on - • Patient health • Social and family life • Education and working life • Healthcare resources! • Boundaries • Specialised v chronic (SCG v PCT) • Genetics / Haematology / metabolics • Fluidity v Carved in Stone • PCT/SCG Priorities • Cancer; Cardiac; Neurology; Children; Renal • Mental Health

  10. This may be a minority service, but … • National Definition • NSC HbO Screening Team → Clinical Services • Political awareness • Supporters in high places • NCEPOD report • What ticks the SCG/PCT boxes?

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