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 Medical Genetics Haemoglobinopathies Specialised Metabolics Cleft Lip and Palate Haemophilia AN/NB Screening (from 2003) National Definitions Set Julia Stallibrass, Rob Couch and me

HbO UK HbO population London 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 )

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

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

Review of Commissioning Specialised Services (Carter Report – 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

Review of Commissioning Specialised Services (Carter Report – 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

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

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

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?