North Thames Children’s Cancer Network Coordinating Group Darren Hargrave Co-chair CCNCG
London Cancer Board UCLP Executives Group
Subgroups Research Implementation Nick Lemoine, Bartshealth
Education, Training and Workforce
Chair: Pelham Allen, CMO: Kathy Pritchard-Jones NEDs: (co-opted) Tony Brzezicki (GP, SWL) Chris Harrison (MD, Christie) Elizabeth Benns (IPCV charity) Emma Ream (Prof. Nursing, Kings)
Cancer Pathway Boards
Expert Reference Groups
• Brain & Spine:
A. Elsmore, Barts & J. Rees, UCLH
• Breast:
R. Roylance, Bartshealth
• Colorectal:
M. Machesney, Bartshealth
• Gynaecology:
T. Mould, UCLH
• Haematology:
K. Ardeshna, UCLH
• Head & Neck:
S. Whitley, Bartshealth & PAH
• Chemotherapy
• Lung:
S. Janes, UCLH
• Nursing
• Skin:
D. Chao, RFH
• Primary Care &
• Upper GI (OG):
D. Khoo, BHRT & M. Mughal, UCLH
• Upper GI (HPB): A Millar, NMUH • Urology:
M. Emberton, UCLH & J. Hines, Bartshealth
• Cancer Partnership Group • Network Acute
Oncology
Prevention • Psychosocial Support
• Radiotherapy
Joint Development Group
Specialist Boards • Children and Young People: D. Hargrave, GOSH R. Hough, UCLH (pan-North London) • Sarcoma: J. Whelan, UCLH A Hayes, RMH
Workstreams Living With and Beyond Cancer Sharon Cavanagh
Clinical Information Astrid Mayer, RFH
(pan-London & South East)
Earlier Diagnosis
North Thames C&TYA Cancer Network
Mount Vernon London Cancer NWL London Cancer Alliance
Essex
Consultation with
Accountable to
North Thames Children, Teenager and Young Adult’s Cancer Networks NHS Commissioning Board Specialised Commissioning London Region/ Midlands & East Region
Working with Clinical Commissioning Groups
Working with Clinical Reference Groups / Strategic Clinical Networks
Integrated Cancer Systems • London Cancer (NCL&WE,&NEL) • London Cancer Alliance (NW part)
North Thames Children, Teenagers & Young Adult’s Cancer Network Coordinating Groups
Children’s Cancer Clinical Working Group
Teenager and Young Adult’s Cancer Clinical Working Group
Chair: Dr Darren Hargrave
Chair: Dr Rachael Hough
Clinical staff and representatives of the POSCUs: Mount Vernon Cancer Network West Herts HT (Watford) Essex Cancer Network Basildon ; Mid Essex; Southend London Cancer Alliance ICS (NW) Imperial HCT (St Mary’s); NWLHT (Northwick Park); Hillingdon; Chelsea & Westminster London Cancer ICS (NCL & WE & NEL) Barts & The London; Newham; Whipps Cross; Whittington; North Middlx; Barnet & CF; PAH Harlow; Queens Romford
Clinical staff and representatives of the TYA designated hospitals: Mount Vernon Cancer Network East & North Herts: Mount Vernon CC Essex Cancer Network Basildon (SC); Mid Essex; Southend; Colchester London Cancer Alliance ICS (NWL) Imperial College HCT / Chelsea &Westminster (HIV, skin) only) London Cancer ICS (NCL&WE&NEL) Royal Free (Skin only)/; Whittington (SC); Barts & the London; Queens Romford (BHRUT)
Paediatric Cancer Clinical Reference Group Work Programme Update
E4 Paediatric Cancer- 25 July 2013 Item 6
6
7 NHS | Presentation to [XXXX Company] | [Type Date]
Working with Clinical Commissioning Groups
Clinical Senate
NHS England
Children’s Strategic Clinical Network
Working with Clinical Reference Groups / Strategic Clinical Networks
Integrated Cancer Systems • London Cancer • London Cancer Alliance
Strategic Clinical Leadership Group Patients and Public
Children’s Network South
Pathway Subgroups (eg CHD, diabetes, oncology) Primary Secondary Tertiary care care care
Children’s Network North
North Thames CCNCG
South Thames CCNCG North Thames Children’s Cancer Clinical Working Group Chair: Dr Darren Hargrave
All POSCU staff Primary Care Leads Charity representatives Patient representatives
WHO ARE THE CCNCG? Membership based in representation but also tasks
Name
Profession/Background
Primary Role
Network representation/Trust
Darren Hargrave
Consultant Paediatric Oncologist
Co-Chair
Great Ormond Street Hospital
Alastair Whitington Rachael Hough
Women and Children’s Services TYA Clinical Lead
Co-Chair NHS England Deputy Pathway Director University College London Hospital
Heather Ward Felicity Dennis
General Practitioner Service Specialist
Lead for Primary Care Commissioning rep
NHS England (London region)
Julie Bayliss
PTC Lead Nurse
Lead Nursing/Education
Great Ormond Street Hospital
Leena Karnik
Consultant Paediatric Haematologist
Lead for supportive care
North West LondonSt Mary’s Hospital
Nicholas Goulden
Consultant Paediatric Haematologist
PTC Lead/Research
Great Ormond Street Hospital
Pam Evans
Senior Service Specialist
Commissioning rep
NHS England (East Anglia region)
Pam Robinson
CLIC Sargent
Patient Experience/ advocate
Raghavan Mahesh Babu
Consultant Paediatrician
Lead early diagnosis
Richa Ajitsaria
Consultant Paediatrician,
POSCU Lead for Education
Hillingdon Hospital
Sara Stoneham
Consultant Paediatric Oncologist
PTC Clinical Lead/Supportive Care
UCLH
Tanzina Chowdhury
Consultant Paediatric Oncologist
Lead for Survivorship
Great Ormond Street Hospital
Vasanta Nanduri
Consultant Paediatrician
POSCU representative
Mount Vernon/ Watford Hspital
Wendy King
Paediatric Oncology Nurse Consultant
POSCU Lead for Nursing Whittington Health
Zoe Berger
Clinical Psychologist
Lead for AHPs/ Patient experience
Rotating Chair of the Parent Council Sonja Tattermusch
Manager
Patient representatives
EssexBroomfield Hospital Chelmsford
GOSH
Patient Representative Pathway Manager
London Cancer
Responsibilities •
Represent professional & patient community consulting all stakeholders.
•
Develop a prioritised programme of work to improve patient outcomes and experience.
•
Accountable to commissioners and London Cancer Board.
•
Meet mandatory requirements e.g. Peer Review and mandatory dataset collection (cancer waiting times, cancer registry, national audits, COSD dataset).
Responsibilities • Network governance (with PTC and POSCU). • Monitor performance and improvements in outcomes & patient experience • Improve early diagnosis • Promote and develop research and innovation. • Discuss opportunities for improved education and training and implement new educational initiatives.
CCNCG Objectives 2013-14 Network Governance • Updating pan-Thames Paediatric Shared Care Protocols • Update paediatric 2 week wait referral form Patient Experience • Collating and streamlining patient information across the network • Conduct system-wide patient experience survey • Set up a parent council to act as consultants to the work of the CCNCG • Develop holistic needs assessment for children • Develop a feedback audit for children Survivorship • Auditing current Late Effects Service for children • Development and implementation of action plan for service improvements
Research & Early Diagnosis • Increasing clinical trials recruitment • To promote public and clinical awareness for brain tumours in children by implementing the Headsmart project across the North Thames network
NETWORK GOVERNANCE Darren Hargrave
NICE Neutropenic Sepsis
Definition of neutropenia
Current London NICE guidance guidance < 0.75 x 109/l 0.5×109/l or lower
Definition of fever Current London guidance
NICE guidance
Fever > 38o C: •
for > 4 hours or
•
on 2 occasions at least 4 hours apart
Fever > 38.5oC on one occasion
38o C or higher
Investigations Current London guidance
NICE guidance
No specific guidance on blood tests
Liver function (including albumin), CRP and venous lactate
Peripheral blood culture only if no central line
Peripheral blood culture in addition to CVL culture
Urine microscopy and culture for all patients
Urinalysis for < 5 years
Antibiotic therapy
Current London guidance
NICE guidance
Piptazobactam and gentamicin Piptazobactam monotherapy (*GOSH patients - avoid aminoglycoside if No aminoglycosides unless A1555G mitochondrial mutation and use amikacin due to gent-resistant organisms) patient or local reasons to do so Teicoplanin or vancomycin if pain/inflammation around endoprosthesis or tunnel infection
No glycopeptides routinely
Step down to oral antibiotics
Current London guidance
NICE guidance
Switch from iv to oral antibiotics after 48h after appropriate risk stratification checklist completed
Switch from iv to oral antibiotics should be considered after 48 h of treatment in patients who are low risk using validated scoring system
Risk stratification Current London guidance
NICE guidance
Risk stratification checklist
Modified Alexander rule
Prophylaxis Current London guidance
NICE guidance
GOSH patients undergoing allografts receive ciprofloxacin prophylaxis during neutropenic phase.
Too little evidence to recommend either antibiotic prophylaxis or routine G-CSF in children to prevent neutropenic sepsis
In young children in nappies, ciprofloxacin prophylaxis may be continued until line removal.
Updating Guidelines & 2 ww forms • Due to changes in cancer networks • Needed updating • Incident of possible delay in referral as result of using 2ww form? • Memo sent and feedback from POSCUs
PATIENT EXPERIENCE Zoe Berger and Julie Bayliss
SURVIVORSHIP Tanzina Chowdhury
RESEARCH & EARLY DIAGNOSIS Darren Hargrave/ Nicholas Goulden
Research
Early Diagnosis Awareness: • Primary care- education events, articles (Pulse) and e-learning (Sophie Wilne- RCGPs), 2 www forms? • Secondary Paediatrics- educational materials (POSCU leads), articles (Archives education) • ? Public awareness
Early Diagnosis • Interventions: • Monica Lakhanpaul- Prof Integrated Child Health, UCL • Pilot study to develop a GP proforma/ scoring system to improve detection of significant childhood illness • ? Ideas for secondary paediatrics for early diagnosis
CCNCG Goals/metrics 2014-2015? Network metrics (PROMs and PREMs) •Peer Review & Meeting Service Specifications •Survival data (Toxic death rate)- comparison with National and International data •Compliance with supportive care •Patient experience (PREMs) – annual survey
Questions and ideas? THANKS
