National Cancer Survivorship Initiative Supporting Cancer Survivors - A New Aftercare System Adam Glaser Clinical Director NCSI Gilmour Frew Director:

National Cancer Survivorship Initiative

Supporting Cancer Survivors- A New Aftercare System

Adam GlaserClinical Director

NCSI

Gilmour FrewDirector: Cancer Improvement

NHS Improvement

Steve HindleSurvivorship Programme Lead

Macmillan Cancer Support


Goals of cancer care

Adding years to life

&

Adding life to years


Is there a need for change?• 2 million living with and beyond cancer in UK

– 1.6 m completed therapy– Prevalence increases by 3.2% p.a.

– 4 million in 20 years

• Late consequences– 60% adult survivors of young people’s cancer have 1 or

more late consequence 10 years from completion of therapy– Increasing with time from completion of therapy


Follow-up Current situation

• >25% of people had unmet needs 1 year post Treatment Armes JCO,

2009

• 2009 Picker survey of over 2,000 survivors:

1. 43% wanted more information & advice2. 75% did not have, or did not know if they had, a care plan 3. 75% did not know who to contact for advice outside of

office hours.


Follow-up Current Situation

– Not meeting all user’s needs

– Inconsistent

– Not evidence based

– Unsustainable


Cost of 5y Hospital Follow-up• Breast: £ 916

Lung: £ 546Colorectal: £1,130Prostate: £1,051

• 29% of adult patients' contact with NHS is unplanned (by cost)

• Personal costs range from £227 to £857 for adults at follow up clinics


National Cancer Survivor Initiative

Aims

• To understand the needs of those living with & beyond cancer

• To develop models of care to meet their needs

• To design evidence-based sustainable services to accommodate the increasing numbers of cancer survivors in the future


Emerging Principles• Risk Stratified pathways of care rather than one size fits all • Dynamic personal care plan which arises from an

assessment of the disease, the treatment, and the individuals personal circumstances

• Information provision should meet individual needs and should be timely, accessible and promote confidence, choice, and control

• Individuals should be encouraged to self manage with support and rapid access to appropriate professional when problems arise


Enablers

• Awareness and education patients and staff

• Evidence to identify what is being done well & what needs to improve

• Innovation– Automated surveillance– Health & well-being reviews– Education programmes patients and staff

– Exercise programmes

• Sensitivity to current economic climate

• Patient reported outcomes


Prototype Testing Hypothesis

By introducing 3 risk stratified levels of care for those living with and beyond cancer there will be a measurable difference in:

• The patient experience of care• Have all the information and advice required to manage their condition• Who know who to contact in and out of hours should they have a problem• Who have been offered a care plan

•At least a 50% reduction in out patient attendances, and a 10% reduction in unplanned admissions


Testing in Practice

– 3 levels of care• Self managed care

• Shared care

• Complex care

– 4 tumour types• Breast

• Colorectal

• Lung

• prostate

7 prototype communities, testing



Transformed Pathways of Care: Overview


3 Levels of care and support


Self-management with support and appropriate surveillance


Care Management


Complex Care


What is self management?‘What health services do in order to aid and

encourage people living with a long term condition to make daily decisions that improve health related behaviours & clinical, & other outcomes’

Self management education/training programmes

Skills development for professionals

Institutional support for service redesignPromotes self management skills (goal setting, action planning) for improved quality of life, knowledge of condition and coping behaviour. Testing at Southampton University Hospital Trust.

National Cancer Survivorship Initiative19

Patients and carers need support and information to prepare for transition after treatment.

Testing HWB events where patients get support from professionals about managing their cancer, signs and symptoms, and how to get help.

Support with lifestyle management, information about self management and support groups.

Volunteers will be key, meeting & greeting, organising and offering peer support.

Health and Well Being events


Lifestyle change more important for cancer survivors than others

Obesity

Dietary fat intake

Exercise

Smoking


Consequences of cancer treatment• Becomes “part of the cancer story” for patients, professionals

and commissioners

• Patients need to know about effects of treatment, including how to recognise and get help where necessary

• Working so that professionals know about the problems and understand that there can be solutions

• Commissioners need to know how to build this in to the services that they buy.

• We are testing new ways to provide specialist services for people affected by the consequences of pelvic radiotherapy.


Work and Cancer

• 109,000 working age people each year diagnosed with cancer in UK

• Nearly 800,000 people of working age in UK have had a cancer diagnosis

• Cancer survivors tell us work is important - restoring normality, social contact and income

• BUT, 50% of patients not offered flexible working arrangements & 80% of employers not aware that cancer is covered by Equality Act (2010)


What are we doing about return to work?• Developed information for employers, employees, and the

self employed – now on Macmillan website• Testing ways to support people about work concerns in 7

‘vocational rehabilitation’ pilots• Early results – people want information about work early,

but professionals give mixed messages• Managers often lack knowledge/skills to manage staff with

cancer• Patients are unaware of their employment rights• Expert advisers can predict & help with problems patients

are not yet aware of


Breakout challenge

Discuss in groups:

How does this fit with the new Health White paper?

What are the enablers?

What are the challenges to implementation?


Summary

Exciting opportunity to pro-actively influence the delivery of care to a rapidly increasing percentage of the population

Challenge to develop practical, sustainable evidence based pathways offering enhanced quality and productivity

ncsi.org.uk

Documents

National Cancer Survivorship Initiative Supporting Cancer Survivors - A New Aftercare System Adam Glaser Clinical Director NCSI Gilmour Frew Director: