key messages national cancer survivorship initiative central hall, westminster monday 21 september...

Key MessagesKey Messages

National Cancer Survivorship Initiative

Central Hall, WestminsterMonday 21 September 2009


Assessment and Care Planning

Ciarán Devane Chair, Assessment and Care Planning Workstream


Two Million Survivors Two Million Survivors

But how many have a care plan for survivorship?



But how many GPs are awareof the treatment that their patients have received and their survivorship care plan?



But how successfully does the GP Cancer Care review meet their needs?



But how does Follow Up careneed to change to meet their needs?


Active and Advanced Disease

Steven Wibberley Support, Active and Advanced Disease Workstream


What we’ve done

Papers reviewing:

• Patterns of disease

• Developing ‘coping’

• Patient-centrednessin primary care

• Quality of health, living, being and dying

• End of life transitions

Papers reviewing:

• Patterns of disease

• Developing ‘coping’

• Patient-centrednessin primary care

• Quality of health, living, being and dying

• End of life transitions

Workshops on:

• What is meant by Active & Advanced

• Patient-centred support

• Primary care setting

• Transitions to EOLC

Workshops on:

• What is meant by Active & Advanced

• Patient-centred support

• Primary care setting

• Transitions to EOLC


Priorities

Well-being - living with and beyond cancer• Coping, wellness, the ‘new normal’, relationships

Getting back into the system on recurrence• Self-referral, pathways from primary care, treatment by MDT, role of A&E

Transition to End of Life Care• Who decides and when, communications

– early involvemnent of palliative care

Ongoing assessment and care plansOngoing assessment and care plans


Our ideal world would look like ...

Everyone hasa personalised care

plan

Everyone hasa personalised care

plan

Easy access to support and rehab

services

Easy access to support and rehab

services

Prompt and sensitive pathways

back into the system

Prompt and sensitive pathways

back into the system

EoLC decisionsare made together

by patients and professionals

EoLC decisionsare made together

by patients and professionals


Long Term Consequences of Treatment

Alastair MunroProfessor of Radiation Oncology, University of Dundee


The Consequences of Cancer and its Treatment• cause problems that currently affect 400,000 people• have significant impact on daily life• are both physical and psychological• may be hard to identify, for both patients and professionals• have significant economic impact• are insufficiently appreciated and understood• are secretly consuming resources• can be managed efficiently and effectively

– early intervention prevention⇒– later intervention decreased impact ⇒

• provide an ideal test-bed for exploring self-care


How to improve matters: the decision space

SCA

L

E

SCA

L

E

SEVERITY / COMPLEXITY


How to improve matters: the way forward…?• liaison with primary care and consumers

• record-linkage for identification of problems and syndromes (clinical informatics)

• systematic review of available knowledge

• developing new pathways and models of care – resolving the centralisation paradox– self-care and social networking– peripatetic experts?– one-off clinics?– the virtual MDT?

• economic analysis & spending to save

• devising and assessing new interventions

these are complex issues - which is why we would appreciateyour help with this afternoon’s workshop


Self Management

Jessica CornerChair, Self-Management Workstream

Self Management Support Workstream


Where are we now?


Self Management in cancer


Self Management support is what health services do to encourage cancer survivors make decisions that improve their health and clinical outcomes.(THF)

Collaborative professional – patient relationship

Collaborative professional – patient relationship

1. Self management programmes2. HCPs supporting self management

in routine clinical practice3. Aftercare services: Care co-ordinator/supporter

Interactive technologiesInternet/telephone

1. Self management programmes2. HCPs supporting self management

in routine clinical practice3. Aftercare services: Care co-ordinator/supporter

Interactive technologiesInternet/telephone

Selfmanagement

Support

Selfmanagement

Support+


Cancer survivorship and self management: Reviewing evidence

• Review of evidence base for self management support for cancer survivors (and drawing on work in long term conditions)February 2008 Fenlon and Foster 2008)

• Mapping – a snapshot of services identified as supporting self management (Mar – July 2008)

• Review of outcome measures for self management support in the context of cancer survivorship April 2009 (Davies 2009)

• Updated review of the evidence for follow-up support services (Ongoing)

• Review of the evidence for impact of specific lifestyle factors on recovery, progression and health related quality of life (ongoing)


Current Activity: Testing the framework

• First test site: – Test community Birmingham East and North PCT/HOE NHS Trust/Pan

Birmingham Cancer Network Self management programme for patients and advanced development programme for professionals as part of a redesigned follow-up and support pathway for breast cancer patients at Good Hope Hospital.

• Scoping an additional two potential test sites.

• Working with other workstreams to develop and test approachesfor survivors living with advanced disease, and for survivors experiencing long-term consequences of cancer and its treatment.


Work and Finance

Barbara Wilson Chair, Work and Finance Workstream


What we’re dealing with

• Basic provision of information,advice and support about workand financial support is not offeredto cancer patients, their familiesor carers

• Vocational rehab services for those who want to return to work duringor after cancer treatment are largely non existent

• Employers do not know how to support staff who have cancer


Progress to date

• We have reviewed the literature on work and cancerand identified key gaps

• We have developed a proposed model of vocationalrehabilitation for cancer patients

• We have commissioned a study to explore whether DWP employment programmes meet the needs of cancer patients

• We are working closely with Macmillan’s Working ThroughCancer pilot to develop and test a toolkit of resourcesfor employers


Key areas where we’re seeking your views

• A new model ofvocational rehabilitation

• Providing triage tools about work and financial matters from diagnosis onwards

• Strategy for increasing employers’ knowledgeand awareness about howto support employees affected by cancer.


Children and Young People

Carole Easton Chair, Children and Young People Workstream


Children and Young People • Personalised targeted follow up

• Reduction in numbers lost to follow up

• Reduction in empty episodes

• Risk stratified

• Informed supported self management

• Evidence based

• Access to universal and specialised community services

• As close to home as possible

• Cost effective


Living as normally aspossible for as long as possible



Having the best possibleexperience of living withand beyond cancer


key messages national cancer survivorship initiative central hall, westminster monday 21 september...

Documents

survivorship care plan

cancer coping

consequences of cancer

eolc slide

gp cancer care review

care planning workstream

care plans

professionals slide