Metabolic Pathways Networks of Care Professor Anne Green Lead - - PowerPoint PPT Presentation

▶
metabolic pathways networks of care
SMART_READER_LITE
LIVE PREVIEW

Metabolic Pathways Networks of Care Professor Anne Green Lead - - PowerPoint PPT Presentation

Dec 27, 2022 343 likes •722 views

Metabolic Pathways Networks of Care Professor Anne Green Lead Scientist Metabolic Biochemistry Network www.metbio.net Presentation to RCPath March 2006 National Metabolic Biochemistry Network National Metabolic Biochemistry Network

slide-1
SLIDE 1

National Metabolic Biochemistry Network

Metabolic Pathways Networks of Care

Professor Anne Green

Lead Scientist Metabolic Biochemistry Network

www.metbio.net Presentation to RCPath March 2006

slide-2
SLIDE 2

National Metabolic Biochemistry Network

slide-3
SLIDE 3

National Metabolic Biochemistry Network

Services for Inherited Metabolic Disorders

  • Individually rare disorders eg PKU, Lys storage, Mitochondrial

– ~600 new cases per year – ~ 10 000 cases attend specialist services

  • Care Pathway

– Newborn screening (PKU & MCADD) – Diagnosis – 200 + specialised lab tests – Treatment & Management of complex therapies – Family testing and prenatal diagnosis

  • Multidisciplinary team care

– Integrated lab service (clinics/MDT)

slide-4
SLIDE 4

National Metabolic Biochemistry Network

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
slide-5
SLIDE 5

National Metabolic Biochemistry Network

Estimates of shortfall for patients in specialist care

Children Adults Estimated number for UK* 12103 6827 Totals reported 6547 3499 Shortfall 5556 3328 *Based on Northwest rates

slide-6
SLIDE 6

National Metabolic Biochemistry Network

10-fold geographic variation in patients per 100,000 population

Adult patients per100,000 Paediatric patients per100,000

slide-7
SLIDE 7

National Metabolic Biochemistry Network

Critical mass: implications for clinical governance

Number of patients attending the service

slide-8
SLIDE 8

National Metabolic Biochemistry Network

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

slide-9
SLIDE 9

National Metabolic Biochemistry Network

Metabolic Biochemistry (Biochemical Genetics)

  • Review of the Lab services
  • Issues
  • Recommendations
  • How to go forward?/What is needed
slide-10
SLIDE 10

National Metabolic Biochemistry Network

Formation of MetBioNet

  • National Lab Network ( MetBioNet)

– context/background – achievements – review of National needs

slide-11
SLIDE 11

National Metabolic Biochemistry Network

Background – Genetics Agenda

  • Specialised services definition no 20

– Includes lab biochemical genetics

  • Genetics White paper monies 2001
slide-12
SLIDE 12

National Metabolic Biochemistry Network

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

  • thers/DH
slide-13
SLIDE 13

National Metabolic Biochemistry Network

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

slide-14
SLIDE 14

National Metabolic Biochemistry Network

Genetics Development Project

  • DH project

– Oct 2002 - Oct 2004 – extended to April 2006 – Limited funds for 2006/7

  • Hosted – Birmingham Children’s

Hospital

  • Lead Scientist

– 0.4 wte – A/C support

slide-15
SLIDE 15

National Metabolic Biochemistry Network

Stakeholders

Metabolic Biochemistry Labs in UK

slide-16
SLIDE 16

National Metabolic Biochemistry Network

Stakeholder Laboratories(n=16)

Lab size/ Populations served

Size of Population

  • 4 million or greater 5
  • 3 - 3.9 million

2

  • 2 - 2.9 million 6
  • 1 - 1.9 million 3
  • CPA Accreditation

– 15/16 accredited

slide-17
SLIDE 17

National Metabolic Biochemistry Network

Typical Lab

  • Newborn screening

– ~50 – 70 000 newborns pa – 250 000 - 350 000 tests pa

  • Diagnostic tests

(metabolites,enzymes,molecular)

– ~ 10 000 – 20 000 pa

slide-18
SLIDE 18

National Metabolic Biochemistry Network

Outcomes

  • Manpower survey
  • Training strategy
  • Web site
  • Assay directory
  • Guidelines
  • Workshops
  • Quality & Audit initiatives
  • Service review (part of the Burton document)
slide-19
SLIDE 19

National Metabolic Biochemistry Network

Manpower 2004/5

n= 71

25 (21.7) Senior 24 (19.85) Principal 22 (13.6) Consultant

(scientist & medical)

Number ( wte) Clinical Scientists Grade

slide-20
SLIDE 20

National Metabolic Biochemistry Network

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)

slide-21
SLIDE 21

National Metabolic Biochemistry Network

www.metbio.net

slide-22
SLIDE 22

National Metabolic Biochemistry Network

View Stakeholder Details

slide-23
SLIDE 23

National Metabolic Biochemistry Network

Training and Education - Documents

slide-24
SLIDE 24

National Metabolic Biochemistry Network

Training and Education - Presentations

slide-25
SLIDE 25

National Metabolic Biochemistry Network

Best Practice Guidelines

slide-26
SLIDE 26

National Metabolic Biochemistry Network

Metabolic Assay Directory

slide-27
SLIDE 27

National Metabolic Biochemistry Network

Metabolic Assay Directory - Search

slide-28
SLIDE 28

National Metabolic Biochemistry Network

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
slide-29
SLIDE 29

National Metabolic Biochemistry Network

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

slide-30
SLIDE 30

National Metabolic Biochemistry Network

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)
slide-31
SLIDE 31

National Metabolic Biochemistry Network

What is needed

  • Investment/Commissioning for new developments:

– Newborn screening (sickle, CF MCADD etc) – Diagnostic services

slide-32
SLIDE 32

National Metabolic Biochemistry Network

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

slide-33
SLIDE 33

National Metabolic Biochemistry Network

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

slide-34
SLIDE 34

National Metabolic Biochemistry Network

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

slide-35
SLIDE 35

National Metabolic Biochemistry Network

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

slide-36
SLIDE 36

National Metabolic Biochemistry Network

Acknowledgements

  • 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)

  • Jim Bonham , Sheffield
  • Mick Henderson, Leeds
  • Stakeholder Colleagues
  • Mary Dowling Birmingham
  • Birmingham Children’s

Hospital