Presentation by Gill Levitt of Great Ormond Street Hospital for Children NHS Foundation Trust at the London Cancer Children, Teenager and Young Adults Study Day, held on 25 July 2013.

1. Update on national and local
survivorship initiatives
Gill Levitt July 2013

2. Overview
• GOSH update
• Virtual MDT
• National survivorship initiative

3. The team
Multidisiplinary team- meet monthly
Changes:
 Alison Leiper has retired
New Clinical nurse specialist Vivienne Crowe
 New endocrinologist has joined Anu in the
joint endocrine clinic Dr Rakesh Amin
 Increased specialisation

4. Organisation of LTFU
Entry into long-term follow-up (LTFU) at
5 years
Specialists Clinics
HSCT
(Haematology Stem
Cell Transplant)
&
Joint Haematology
Oncology Endocrine
Clinics
(GOSH)
LTFU
Under 12 yrs
clinic
(GOSH)
POSCU
Paediatric
Oncology
Shared Care
Unit
(Shared Care)
LTFU
Over 12 yrs
clinic
(GOSH)
Continuing LTFU GOSH clinics
Up to 16 – 18 years
Transition Clinics
At approximately 18 yrs
(GOSH)
Return to GOSH
at 16 years
Adult LTFU clinic
At UCLH, but
managed by GOSH
Surveillance in
Community
Survivors empowered to self-manage
Informed with Survivors Care Plan
Assisted by effective transition into adulthood
Supported by key worker

5. Future
• Refine the treatment summaries and care
plans
• Reshape the MDT meetings
• Continue work on transition
• Teaching/support for POSCUs
• Continue research
Cardiotoxicity MRI project in collaboration with
Dr Marina Hughes Start-up grant from
Children with Cancer UK

6. A vision for cancer care at
GOSH
• Excellence in a clinical service integrated with
translational research: national/international lead
• Clear, commissioned care pathways integrated
with UCLH
• Development of translational research themes
• World centre for teaching and training – local
population, international fellowships

7. What do you want from
GOSH?

8. 0 5 10 15 20 25 30
TIME (years)
ESOPHAGEAL STENOSIS X
PONTINE HEMORRHAGE X
SECOND MALIGNANCY X
CHONDRONECROSIS X
MIDBRAIN HEMORRHAGE X
IMPAIRED DENTITION
N=7
NEUROENDOCRINE DYSFUNCTION
N=9
CLINICAL HYPOTHYROIDISM
N=3
FACIAL ASYMMETRY
N=11
VISUAL PROBLEMS
N=9
HEARING LOSS
N=6
A major issues for survivors is the complexity
and variable of consequences of treatment
Int. J. Radiation Oncology Biol. Phys., Vol. 48,1489-1495, 2000 Arnold C. Paulino et al

9. Virtual MDT Macmillan/UCLH iniatitive
Why?
Complex problems
requiring expertise
outside the regular
MDT
Teaching tool
Referral from local teams
CCLG MDT audit

10. Process
Pilot study
• Set up a secure website
• Coordinator to organise referrals etc
• Recruitment of specialists to contact re advise
Went live last week
Plan if successful to be available for all HCP
involved in LTFU regardless of age of survivor.
Contact victoria.grandage@uclh.nhs.uk

11. CYP survivorship initiative
2008-2013
Completion of CYP patient pathways (3)
Single Paediatric Pathway
Two TYA pathways
Level1/2 survivors
Level 3 complex care
Including 4 models of care

12. National Cancer Survivorship Initiative

13. CYP survivorship initiative
2008-2013
Completion of CYP patient pathways
Including 4 models of care
10 working principles

14. Ten working principles
1. All cancer survivors, wherever they live can and should
expect to have informed choices in relation to the
services through an established aftercare MDT.
2. All aftercare services are based on consistent, defined
patient pathways
3. All aftercare is based on safe risk stratified levels of care
endorsed by clinicians
4. All cancer survivors should have access to the
appropriate models of aftercare which is ‘right for them’
and in line NICE
5. All cancer survivors can expect to be given a Treatment
Summary and Care Plan at the end of their treatment
and at all stages of transition

15. Ten working principles cont…
6. All cancer survivors should have access to a care co-
ordinator function to streamline their care.
7. All cancer survivors should have pre-planned and pro-
active transition arrangements at all stages of their
aftercare
8. All cancer survivors, who are clinically safe to self-
manage, will be provided with comprehensive
information and be involved in a remote monitoring and
/ or alert systems which prompts screening investigations
9. All cancer survivors “experience feedback” should be
routinely monitored and directly influence
commissioning decision-making
10.There will be a minimum 20% reduction in volume
nationally in hospital based Out-Patient appointments
(those patients already routinely receiving Out-Patient

16. CYP survivorship initiative
2008-2013
• Completion of CYP patient pathways
• Including 4 models of care
• 10 working principles
• Spread and implementation within the
childhood cancer centre

17. Implementation and spread
Six national workshops
Five publications including, evidence review of
models of care, designing and implementation of
pathways, poster presentations etc
Interactive web based pathways backed by
evidence modules
Invited speakers at national and international
meetings
Engagement pack to help implementation of
reform
Working within the CCLG to assist implementation

18. 2013 all change
• New body-NHS Improving Quality(NHSIQ)
hosted by NHS England with a range of
stakeholders
• NHS IQ new brand, new culture, strategic
intent, mixed behaviours
• 5 Domains, 5 Visions
• Cancer issues merged with other chronic illness
• Circa £30 million improvement budget

19. Survivorship
Transition

20. Survivorship 2013-14
Spread and implementation to continue with
the 19 childhood cancer centres
Start spread and implementation within the
14 TYA centres
TYA principle centres gap analysis

21. Transition
NHS IQ priority work stream (1yr)
Aligned to NCD Transition strategy
•Dr Jacqueline Cornish – NCD
Scoping work (Renal, Cancer & Diabetes)
Expected outcomes
• Positioned within wider Transition strategy
• Generic principles & ‘Model’ defined
• Engagement with adult clinicians

22. We still have a way
to go…….
Thank you