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 Crowe

New endocrinologist has joined Anu in the joint endocrine clinic Dr Rakesh Amin

Increased specialisation

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

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

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

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 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

Virtual MDT Macmillan/UCLH iniatitive

Why?

Complex problems requiring expertise outside the regular MDT

Teaching tool

Referral from local teams

CCLG MDT audit

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

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

National Cancer Survivorship Initiative

CYP survivorship initiative

2008-2013

Completion of CYP patient pathways

Including 4 models of care

10 working principles

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

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 follow-up aftercare)

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

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

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

Survivorship Transition

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

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

We still have a way

to go…….

Thank you