1. Clinical Haemoglobinopathies A 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 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 )

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 (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

7. 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

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?