Metabolic Pathways Networks of Care
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1 Metabolic Pathways Networks of Care Professor Anne Green Lead Scientist Metabolic Presentation to RCPath March 2006
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3 Services for Inherited Metabolic Disorders Individually rare disorders eg PKU, Lys storage, Mitochondrial ~600 new cases per year ~ cases attend specialist services Care Pathway Newborn screening (PKU & MCADD) Diagnosis specialised lab tests Treatment & Management of complex therapies Family testing and prenatal diagnosis Multidisciplinary team care Integrated lab service (clinics/mdt)
4 Areas of investigation Epidemiology Outcomes Review of laboratory services Review of clinical services The nursing role The specialist dietitian role Roles and view of the voluntary sector Specialist commissioning
5 Estimates of shortfall for patients in specialist care Children Adults Estimated number for UK* Totals reported Shortfall *Based on Northwest rates
6 10-fold geographic variation in patients per 100,000 population Paediatric patients per100,000 Adult patients per100,000
7 Critical mass: implications for clinical governance Number of patients attending the service
8 Summary of recommendations Strategic advisory group Explicit commissioning Clinical networks Strengthen laboratory and clinical services Developing shared care arrangements Manpower planning and education Close work with voluntary groups
9 Metabolic Biochemistry (Biochemical Genetics) Review of the Lab services Issues Recommendations How to go forward?/what is needed
10 Formation of MetBioNet National Lab Network ( MetBioNet) context/background achievements review of National needs
11 Background Genetics Agenda Specialised services definition no 20 Includes lab biochemical genetics Genetics White paper monies 2001
12 Metabolic Biochemistry 2002 lab services for IMD under pressure increasing workload demands for new tests newborn screening developments robustness of rare, v rare tests (single providers) small size and very specialist vacancies/unable to recruit to CS posts part of general Clinical Biochemistry & Genetics no manpower or training plan retirements & succession planning, need to specialise) lack of awareness of issues by others/dh
13 DH Genetics Project Form a network of stakeholder laboratories across UK Communication Sharing of information Common practices Address key issues Manpower plan Training strategy Service provision Assay directory Develop guidelines Quality initiatives
14 Genetics Development Project DH project Oct Oct 2004 extended to April 2006 Limited funds for 2006/7 Hosted Birmingham Children s Hospital Lead Scientist 0.4 wte A/C support
15 Stakeholders Metabolic Biochemistry Labs in UK
16 Stakeholder Laboratories(n=16) Lab size/ Populations served Size of Population 4 million or greater million million million 3 CPA Accreditation 15/16 accredited
17 Typical Lab Newborn screening ~ newborns pa tests pa Diagnostic tests (metabolites,enzymes,molecular) ~ pa
18 Outcomes Manpower survey Training strategy Web site Assay directory Guidelines Workshops Quality & Audit initiatives Service review (part of the Burton document)
19 Manpower 2004/5 n= 71 Clinical Scientists Grade Consultant (scientist & medical) Principal Number ( wte) 22 (13.6) 24 (19.85) Senior 25 (21.7)
20 Training Outcome Metabolic Biochemistry recognised sub modality (HPC) Lead Trainer ( DH funded for 3 years) 0.4 wte June 2004 Local Trainers ( DH funded for 3 years from 2004) London for South ( 0.4wte) Sheffield for North (0.4 wte) B ham for Midlands /South West/East Anglia(0.8 wte) HSTs Clinical Scientists (5 year posts) 8 new posts from DH Genetics 2004/5 (3 posts funded WDDs)
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22 View Stakeholder Details
23 Training and Education - Documents
24 Training and Education - Presentations
25 Best Practice Guidelines
26 Metabolic Assay Directory
27 Metabolic Assay Directory - Search
28 Service assessment Questionnaires October Dec 2003 Manpower- May 2004 Workload/Diagnoses -Feb 2005 Lab size Core test provision Specialist test provision Equipment Turnaround times Staffing Training
29 Main laboratory findings Vulnerability of some tests Compromised turn around times No formal out of hours service Accommodation increasingly inadequate Urgent need for new and replacement equipment (AA, GCMS) Need recruitment of 49 new trainee clinical scientist and 46 biomedical scientists over next 5 years Continuing support for the network
30 Laboratory recommendations Continue and develop as integral part of MDT Increase workforce resources Capital investment Investment in education and training Review of accommodation Develop database for IMD diagnoses Detailed planning for very specialised tests (Current & new)
31 What is needed Investment/Commissioning for new developments: Newborn screening (sickle, CF MCADD etc) Diagnostic services
32 What is needed Investment/Commissioning for new developments: Newborn screening (sickle, CF MCADD etc) Diagnostic services Sustained investment in training ( current funding ceases 2007) Trainers (for many health professionals) Trainees
33 What is needed Investment/Commissioning for new developments: Newborn screening (sickle, CF MCADD etc) Diagnostic services Sustained investment in training ( current funding ceases 2007) Trainers (for many health professionals) Trainees Funding to continue the network infrastructure current services develop data base of disorders
34 What is needed Investment/Commissioning for new developments: Newborn screening (sickle, CF MCADD etc) Diagnostic services Sustained investment in training ( current funding ceases 2007) Trainers (for many health professionals) Trainees Funding for the network infrastructure Current services develop data base of disorders Metabolic Medicine Training for Adult services Training fit for purpose ( currently inadequate as I year) Consultant posts
35 What is needed Investment/Commissioning for new developments: Newborn screening (sickle, CF MCADD etc) Diagnostic services Sustained investment in training ( current funding ceases 2007) Trainers (for many health professionals) Trainees Funding for the network infrastructure Current services develop data base of disorders Metabolic Medicine Training for Adult services Training fit for purpose ( currently inadequate as I year) Consultant posts
36 Acknowledgements Jim Bonham, Sheffield Mick Henderson, Leeds Stakeholder Colleagues Mary Dowling Birmingham Birmingham Children s Hospital Public Health Genetics Unit Hilary Burton Simon Sanderson DH Genetics ACB Training Committee Royal College Pathologists (SAC Clin Biochem & Genetics) British Inherited Metabolic Disorders Group (BIMDG)
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