Update on national and local
survivorship initiatives
Gill Levitt July 2013
Overview
• GOSH update
• Virtual MDT
• National survivorship initiative
The team
Multidisiplinary team- meet monthly
Changes:
 Alison Leiper has retired
New Clinical nurse specialist Vivienne ...
Organisation of LTFU
Entry into long-term follow-up (LTFU) at
5 years
Specialists Clinics
HSCT
(Haematology Stem
Cell Tran...
Future
• Refine the treatment summaries and care
plans
• Reshape the MDT meetings
• Continue work on transition
• Teaching...
A vision for cancer care at
GOSH
• Excellence in a clinical service integrated with
translational research: national/inter...
What do you want from
GOSH?
0 5 10 15 20 25 30
TIME (years)
ESOPHAGEAL STENOSIS X
PONTINE HEMORRHAGE X
SECOND MALIGNANCY X
CHONDRONECROSIS X
MIDBRAIN ...
Virtual MDT Macmillan/UCLH iniatitive
Why?
Complex problems
requiring expertise
outside the regular
MDT
Teaching tool
Refe...
Process
Pilot study
• Set up a secure website
• Coordinator to organise referrals etc
• Recruitment of specialists to cont...
CYP survivorship initiative
2008-2013
Completion of CYP patient pathways (3)
Single Paediatric Pathway
Two TYA pathways
L...
National Cancer Survivorship Initiative
CYP survivorship initiative
2008-2013
Completion of CYP patient pathways
Including 4 models of care
10 working principl...
Ten working principles
1. All cancer survivors, wherever they live can and should
expect to have informed choices in relat...
Ten working principles cont…
6. All cancer survivors should have access to a care co-
ordinator function to streamline the...
CYP survivorship initiative
2008-2013
• Completion of CYP patient pathways
• Including 4 models of care
• 10 working princ...
Implementation and spread
Six national workshops
Five publications including, evidence review of
models of care, designi...
2013 all change
• New body-NHS Improving Quality(NHSIQ)
hosted by NHS England with a range of
stakeholders
• NHS IQ new br...
Survivorship
Transition
Survivorship 2013-14
Spread and implementation to continue with
the 19 childhood cancer centres
Start spread and impleme...
Transition
NHS IQ priority work stream (1yr)
Aligned to NCD Transition strategy
•Dr Jacqueline Cornish – NCD
Scoping wo...
We still have a way
to go…….
Thank you
Update on local and national survivorship initiatives
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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.

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Update on local and national survivorship initiatives

  1. 1. Update on national and local survivorship initiatives Gill Levitt July 2013
  2. 2. Overview • GOSH update • Virtual MDT • National survivorship initiative
  3. 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. 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. 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. 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. 7. What do you want from GOSH?
  8. 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. 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. 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. 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. 12. National Cancer Survivorship Initiative
  13. 13. CYP survivorship initiative 2008-2013 Completion of CYP patient pathways Including 4 models of care 10 working principles
  14. 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. 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. 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. 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. 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. 19. Survivorship Transition
  20. 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. 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. 22. We still have a way to go……. Thank you

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