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
– 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?