Working collaboratively to commission FH services in the North West

1. Working collaboratively to commission FH services in the North West Ian Ellis Clinical Genetics, Liverpool

2. “Catch 22” • over value – too expensive, can’t afford it • under value – not worth doing it, not bothered • If we emphasize the scale – the costs are scary

3. What’s a family worth? • ‘not a hanging, or a flogging offence’

5. “never in the field of human health commissioning was so much needed by so many . . . . . ”

6. The North-West of England • north of Watford

7. North West England • Lancashire, Greater Manchester 2.2 million • Merseyside (Liverpool 1.4 million), Cheshire • over 6 million people • ≈ 10% population of England • NWSHA - leadership for all NHS organisations across the region • “we make sure that NHS services in the North West provide high-quality, clinically-safe services and spend taxpayers' money properly. Improving public health and reducing health inequalities are also important strategic objectives”

9. Where are we with FH cascade screening? • modest start, not connected • Nov. 2009 strategy meeting • are we going to do this?, if so how? • individually, or together?

10. Consensus • co-ordinated, comprehensive • inclusive, accessible, sustainable • affordable • willingness to collaborate Starting out . . . . . . . .

11. Getting organised . . . . .

12. Why involve genetics? • DNA testing?, the cost? • family history, drawing & recording FHx • personal hospital records vs. family files • privacy and Caldicott, access to these files • ?? sharing information – family tree + FH mutation • working through families, co-ordination, not to miss • to tell or not to tell relatives, duty to warn • new GMC guidance on confidentiality • issues around seeing & testing children

13. missed out duplication

14. GMC (2009) Confidentiality guidance: Genetic and other shared information §69 - ‘ . . . . . . disclosure might still be justified in the public interest. . . . . . you will need to balance your duty to make the care of your patient your first concern against your duty to help protect the other person from serious harm’

15. Moving On • too many probands • not connected • gaps Including somegenetics

16. Option 1

17. Option 2

18. Option 3

19. Monday Tuesday Wednesday Friday Thursday Option 3

20. Liverpool – Mersey & Cheshire • consensus to work together • plan – involve local cardiac network • co-ordinate, champion • joined up commissioning • ‘give us the tools and we will finish the job’

21. Karen Gibbons, Greater Manchester & Cheshire Cardiac Network • baseline audit • meeting planned to discuss implementing NICE guidelines • proposals for implementation in its infancy Ruth Eatough, FH Specialist Nurse, Central Manchester • NICE Guidelines for FH Cascade screening fully implemented at MRI for 1 year • nurse led clinics established, running very effectively • genetic testing is still under discussion. • supervision of Dr Handrean Soran • desperately need a FH database, looking at Dutch software

26. ultimately . . . . . • comprehensive, communication • compatible – agreed data sets, protocols, pathways, targets • we have more consensus, than differences • the will to succeed

27. FH genetic tests - the responsibility of lipid clinics • funding via secondary service budgets • each Trust with a lipid clinic should be in discussions with their host PCT • ‘mainstreaming’ – not genetics • attending the meeting sends the wrong message Divide & disappear!

28. Option 1 Option 2 • model 1 - linked to each other, but how? • model 2 - connected to ‘central FH genetics’ • model 3 -shared genetics & co-ordinated Monday Tuesday Wednesday Friday Thursday Option 3

29. Level 1: 18 LDLR mutations plus “common” APOB and PCSK9 mutations • ~50% pick up rate in definite FH cases • 2 week reporting target - either: £80 for level 1 and then £400 for level 2 if needed • Level 2: DNA sequencing LDLR gene plus MLPA analysis for copy number changes • or: £280 level 1 +/- level 2, 8 week • detection rate ~ 80% of definite FH cases • family member - known FH mutation £80

30. Chips – faster, further, cheaper • Chips Progenika – Spanish based • Microarray technology • 250 mutations

31. Strategic Questions • models of care • FH cascade screening nurse / co-ordinator • DNA tests, diagnostic & predictive • holding & sharing records, admin. support • dealing with families, integrating children • follow-up arrangements • database, IT support • funding this • the will and commitment to go forward

32. Combined land, sea and air operations • push on and see who we can • make numbers, make noise • write bids, float them in to PCTs • get cardiac network & public health on board • go in under the radar, request DNA tests • lost in path. contracts – let them say ‘No!’

33. Special Forces