Welcome and Introduction

Welcome and Introduction
Joanne Rule Event Facilitator

My experience Richard Surman

The survivorship vision
Mike Richards & Ciarán Devane Co-Chairs, NCSI

Chief Executive, Macmillan Cancer Support
National Cancer Survivorship Initiative Ciarán Devane Chief Executive, Macmillan Cancer Support

National Cancer Survivorship Initiative – September 2009
Seven workstreams: Assessment and Care Planning Active and Advanced Disease Consequences of Treatment Self Management Work and Finance Children and Young People Research 27 test communities Cross cutting themes – patient information, workforce, commissioning, equalities Involving service users, carers, clinicians, service commissioners, researchers, charities … National Cancer Survivorship Initiative

Picker Experience of Care Questionnaire – overview
Interim results from the questionnaire highlight significant numbers of respondents who: lacked an up to date care plan have a named key worker who they can contact if they have a concern knew who to contact during office hours; although a larger proportion did not know who to contact out of hours were able to access specialist advice when they needed it all or most of the time would have liked more information and advice on the following: physical aspects of living with and after cancer (e.g. side effects or signs of recurrence) diet and exercise psychological or emotional aspects of living with and after cancer National Cancer Survivorship Initiative

Review of current practice
professional led, medical long term follow up model variation in practice, including use of assessment tools and care plans. majority of patients have no choice or control over follow up assessment or planning variation in service provision including in access to emotional and psychological support some areas of innovation e.g. risk stratified follow up for patients after colorectal cancer in Taunton National Cancer Survivorship Initiative

We have six expectations of the National Cancer Survivorship Initiative
A document describing our vision of the care of people living with or beyond cancer A supporting implementation plan A set of models of care which we have piloted and we know work Acceptance of ‘survivorship’ as a priority for patients Translation of the vision into action at a local level, using approaches similar to those tested A community of interested people who will continue to lead this agenda National Cancer Survivorship Initiative 11 11

Early work by workstreams, testing work underway 2009/10
NCSI Looking ahead 2008/09 Early work by workstreams, testing work underway 2009/10 Principles from workstreams, results of testing work, developing commissioning guidance 2010/11 Commissioning guidance available for 2011/12 planning National Cancer Survivorship Initiative

Mike Richards National Cancer Director

Attitudes Information Care planning Support Measurement
Five Shifts? Attitudes Information Care planning Support Measurement Are these right? What’s missing? Please feedback – National Cancer Survivorship Initiative

QUALITY INNOVATION PREVENTION PRODUCTIVITY
The QIPP Challenge QUALITY INNOVATION PREVENTION PRODUCTIVITY National Cancer Survivorship Initiative

Quality Innovation Prevention Productivity The QIPP Challenge
National Cancer Survivorship Initiative

Ciarán Devane Chief Executive, Macmillan Cancer Support

National Cancer Survivorship Initiative Review of Research into Cancer Survivorship
John Neate

Overall aim of NCSI The Cancer Reform Strategy (2007) outlined the need for a NCSI to improve the care and support provided for those living with and beyond cancer

NCSI work streams Active and Advanced Disease
Assessment and Care Planning Consequences of Treatment Children and Young People Supported by NHS Improvement (Adults) Self Management Work and Finance Research Research

NCSI work streams Active and Advanced Disease
Assessment and Care Planning Consequences of Treatment Children and Young People Self Management Work and Finance Research Supported by NHS Improvement (Adults)

Research work stream – overall aims
To identify what is – and what is not – known about the health and wellbeing and care and support of cancer survivors To prioritise a future research agenda to tackle the ‘not knowns’ To work closely with the National Cancer Research Institute (NCRI) in informing the commissioning of a research programme to address key identified priorities

The approach Mapping of survivorship ‘journey’ – carried out for prostate, lung, breast and colorectal cancer and for the less common cancers (Cancer 52) – involving internal and external stakeholder consultation Evidence review to assess the knowns and not knowns of survivorship research Prioritisation of research questions for new research programme

Cross-cutting survivorship issues
Information Access to services Primary care Age Psychosocial issues Marital status Implementation of good practice Recording data Issues specific to the less common cancers, e.g. diagnostic delays

Evidence review Being carried out by CECO and COMPASS supportive and palliative care research collaboratives Will inform the Research Workstream and the other six NCSI Workstreams ‘Evidence’ considered includes published literature + unpublished reports and studies, ongoing research and collections of quality of life data Consultation is taking place with the research, charity and cancer survivor communities The emphasis will be on finding practical solutions practical

Possible priorities? Research that builds on existing work – another push will take us there Applied research that will make a quick difference to survivors Cost and cost-benefit Impact – on a large number of people or a smaller group to a significant extent Feasible to be carried out – and implemented Impact on carers – economic aspects The ‘unknown unknowns’ Understanding of barriers to implementation Areas not funded by existing funding streams Others??

Some thoughts Today is a key part of the priority setting process – but sits in a wider consultation process Need to deliver improvements as fast as possible – a practical focus Have to square the emerging research themes with the interests of potential research funders Need to ensure that a continuous loop of research learning and implementation leads to ongoing improvement in survivorship support – this cannot be a ‘one off’ exercise Need to produce a practical document for healthcare providers, commissioners, survivors and researchers

What does the evidence review tell us?
John Neate & Professor Julia Addington-Hall

What does the evidence review tell us?
Professor Julia Addington-Hall Official position ????????

J. Addington-Hall, A. Richardson, M. Sharpe,
Comprehensive review of the evidence base on cancer survivorship for NCSI: update of work in progress If using a school logo, make sure that if you have a long page title, it does not encroach on the logo. Allow about 2cm around the logo. Run the page title onto two lines if necessary. J. Addington-Hall, A. Richardson, M. Sharpe, D. Stark, C. Foster & Z. Amir

Aims of comprehensive review
to systematically scope and collate the research evidence regarding health and well-being of cancer survivors to systematically scope and collate research evidence regarding interventions designed to improve the health and well-being of cancer survivors to identify priority areas for further research to identify areas for systematic review If using a school logo, make sure that if you have a long page title, it does not encroach on the logo. Allow about 2cm around the logo. Run the page title onto two lines if necessary.

Scoping of literature reviews regarding health and well-being of cancer survivors
Claire Foster, Issy Scott, Nikki Jarrett, Ziv Amir, Sarah Brearley, Zoe Stamataki - Scoping of interventions designed to improve the health and well being of cancer survivors Lucy Ziegler, Dan Stark , Michael Sharpe, Laura Hodges, Jane Hook, Richard Garry, Alison Richardson

1. Methods Search strategy developed with librarian
Rapid scoping focused on ‘health and well-being’ of cancer survivors including physical, psychological, social, and practical aspects BNI; CINAHL; EMBASE; Medline; Psychinfo; Web of Science; Cochrane Published literature reviews ; targeted search for primary data papers in past 5 years. Grey literature. Published research evidence identified and collated regarding problems and needs of cancer survivors aged 18+ Quality Score 2+

Psychosocial papers 4,051 papers identified  39 relevant (abstract)  17 reviews included
Cancer type: Breast cancer = 5 Ovarian cancer = 2 Prostate = 1 Testicular = 1 Mixed cancer types = 8 Focus of reviews: Quality of life = 5 Psychosocial consequences = 5 Distress = 2 Rural women/ Coping/Behaviour change/ Interventions & survival/Information needs = 1 each

Physical and practical papers – 5,112 papers identified  42 relevant (abstract)  9 reviews included Cancer types: Ovarian = 1 Prostate = 1 Testicular = 1 Various = 6 Focus of reviews: Fatigue = 2 Employment = 2 General symptoms = 2 Aging = 1 Unmet needs = 1 Sexual functioning = 1

II. Methods Search strategy developed with librarian using systematic review and RCT filters Interventions: Any intervention that specifies relief of one of the target problems in adults as primary aim. Target problems: Depression, Anxiety and fear of recurrence, Emotional distress, Fatigue or Pain. Published systematic reviews and RCTs Amed, Embase, Psychinfo, Medline, HMIC and Cochrane Library 183 reviews were identified and screened for inclusion qualified. Over 9000 RCTs identified: when good quality SRs, will catalogue RCT from date of SR.

Impaired quality of life 6
Focus of systematic review Number of systematic reviews Mental well-being Depression 9 Anxiety 8 Distress Fatigue 7 Pain 17 Physical symptoms Treatment induced physical symptoms 10 Disease induced physical symptoms Social functioning Relationship difficulties 3 Employment difficulties 1 Impaired quality of life 6

Next steps I. Extract key findings from included literature reviews
Strategic scope for primary data papers in past 5 years Compare and contrast with mapping reports (bowel, breast, prostate, lung and rarer cancers) Consider grey literature and research in progress identified in consultation exercise II. extract data on effectiveness of interventions from SRs RCTs Reduce number of RCTs identified by applying revised cut-off date (informed by systematic review inclusion dates) Screen remaining RCTs for inclusion/exclusion Extract data on type of intervention

Questionnaire survey. Aims
What are the views of stakeholders about the most pressing research questions that pertain to the health and well-being of cancer survivors? What is the focus of current & planned research in the UK? Are there large datasets in existence that could potentially be accessed for the purposes of secondary analysis?

Design Main criteria: considered ‘expert’
Compass & CECo recommendations Original respondents to NCRI questionnaire NCSI work stream members Relevant NCRI Clinical Studies Groups members Participants of mapping exercises Charities & statutory organisations

Sample description (n = 204)
Academic researcher = 61 NHS researcher = 29 Cancer charity/voluntary organisation = 24 Cancer survivor = 27 Carer/family member = 8 Professional organisation/committee = 9 Other = 39 Unknown = 7 England = 150 Wales = 2 Scotland = 16 Northern Ireland = 6 UK wide = 10 Not UK = 2 Not known = 18

Key themes Surveillance for late effects and cancer recurrence
Return to work or education and financial matters Psychological impact Organisation and delivery of services Outcome measurement Active or advanced stage of disease Carers Lack of data on psychological, social and physical needs Self-management Late effects

Consultation Event. How to use your keypad
Simply press the button that corresponds with the option you wish to vote for. If you press the wrong button or change your mind, don’t worry just press again. The only vote that will register is your last vote. All responses are anonymous

Are you mainly interested in cancer survivorship because :
you have (or have had) cancer you care clinically for cancer patients someone you know has had cancer you provide services for cancer patients you commission services for cancer patients you make policy about cancer you fund research you do research you campaign about cancer you support people with cancer Warm-up.ppv

Advanced stage + surveillance removed
III. Please select the topic you think is MOST important, followed by the second and third. Understanding need Psychological issues Carers and families Self-management Consequences of cancer & TMT Lifestyle management Finance Service organisation & delivery Outcome measures Co-morbidities Priority 3.ppv Advanced stage + surveillance removed

Emerging priorities

Comprehensive, timely – and useful
We are (about) two thirds of the way through….. June 2009 October 2009 Comprehensive, timely – and useful

Table work and feedback
How does this change or challenge what I do? Which research gap must still be filled?

Central Hall, Westminster
National Cancer Survivorship Initiative Central Hall, Westminster Monday 21 September 2009 Key Messages Key Messages

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 aware of 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 care need to change to meet their needs? We don’t have all the answers but we have made progress. Why not come along and see what we have achieved. We need you to share your ideas and experience. Don’t miss this opportunity to have your say.

Key Messages Key Messages

Active and Advanced Disease
Steven Wibberley Support, Active and Advanced Disease Workstream

What we’ve done Papers reviewing: Workshops on: Patterns of disease
What is meant by Active & Advanced Patient-centred support Primary care setting Transitions to EOLC Papers reviewing: Patterns of disease Developing ‘coping’ Patient-centredness in primary care Quality of health, living, being and dying End of life transitions

Ongoing assessment and care plans
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 plans

Our ideal world would look like ...
Everyone has a personalised care plan Easy access to support and rehab services Prompt and sensitive pathways back into the system EoLC decisions are made together by patients and professionals

Long Term Consequences of Treatment
Alastair Munro Professor 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
SEVERITY / COMPLEXITY SCA L E

How to improve matters: the decision space
SCALE SEVERITY / COMPLEXITY 67

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 appreciate your help with this afternoon’s workshop

Chair, Self-Management Workstream
Jessica Corner Chair, Self-Management Workstream

Chair, Self-Management Workstream
Self Management Support Workstream National Cancer Survivorship Initiative Where are we now? Jessica Corner Chair, Self-Management Workstream

Self Management Support Workstream National Cancer Survivorship Initiative Where are we now?

Self Management in cancer

+ Self management Support
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 Self management Support + Self management programmes HCPs supporting self management in routine clinical practice Aftercare services: Care co-ordinator/supporter Interactive technologies Internet/telephone

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 approaches for survivors living with advanced disease, and for survivors experiencing long-term consequences of cancer and its treatment.

Chair, Work and Finance Workstream
Barbara Wilson Chair, Work and Finance Workstream

Barbara Wilson, Workstream Chair
National Cancer Survivorship Initiative Conference Work and finance workstream September Barbara Wilson, Workstream Chair

What we’re dealing with
Basic provision of information, advice and support about work and financial support is not offered to cancer patients, their families or carers Vocational rehab services for those who want to return to work during or 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 cancer and identified key gaps We have developed a proposed model of vocational rehabilitation 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 Through Cancer pilot to develop and test a toolkit of resources for employers

Key areas where we’re seeking your views
A new model of vocational rehabilitation Providing triage tools about work and financial matters from diagnosis onwards Strategy for increasing employers’ knowledge and awareness about how to 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 as possible for as long as possible
Children and Young People Living as normally as possible for as long as possible We don’t have all the answers but we have made progress. Why not come along and see what we have achieved. We need you to share your ideas and experience. Don’t miss this opportunity to have your say.

Having the best possible experience of living with and beyond cancer
Children and Young People Having the best possible experience of living with and beyond cancer We don’t have all the answers but we have made progress. Why not come along and see what we have achieved. We need you to share your ideas and experience. Don’t miss this opportunity to have your say.

National Cancer Survivorship Initiative Central Hall, Westminster Monday 21 September 2009

NHS Improvement Adult Living with and Beyond Cancer Workstream
Gilmour Frew Director NHS Improvement

NHS Improvement Adult Living with and Beyond Cancer Workstream
91

Work in Progress Picker Experience of Care Baseline Survey
Review of Follow-up / Survivorship Services Practice in England for 3 tumour types Testing new models of care for those living with and beyond cancer 92

Challenges to address Areas of innovations, but no whole system approach Models of delivery are professionally led therefore along way from survivor led or self care Culture of traditional follow up over 5-10 years a long way from new stratified models of care Downstream impact of today's service not seen in relation to hospital attendances nor emergencies; the current service works in splendid isolation Gap between strategic vision and reality on ground is huge 93

Testing Models of Care Three presentations from Test Communities
Key themes: Need to shift from disease and illness to health and wellbeing where appropriate Look across the whole pathway of care and support from prevention to end of life care One size does not fit all You need to test approaches and models of care and not assume that fixing part of a system will resolve root cause problems 94

Overview of test communities Overview of test communities

Overview of test communities Surviving Cancer-Living life
Jannike Nordlund Project Manager, Guy’s and St Thomas’ NHS Foundation Trust

NCSI Conference 21 Sep 2009 Jannike 97

Introduction – what initiated the project?
Pfizer Health Solutions - Expertise in management of long term conditions Guy’s and St Thomas’ - expertise in oncology and willingness to invest in innovation Kings College London evaluation From thought to reality in 8 months 15 months on – 380 patients enrolled Jannike

What is the success of the project?
Summary findings of qualitative evaluation Interviews with 22 patients: Service perception Answered deep felt need Right approach at the right time Telephone support First point of contact for health issues Different to contact with GP and CNS Emma

What are the leanings? Extensive engagement and involvement with clinical teams to ensure harmonisation Ensure a clear understanding of all elements of follow up care that is already offered prior to project set up - avoid duplication. Funding – SCLL needs to be part of overall follow up pathway, will not be separately funded. Telephone support – not the only solution, one model doesn’t fit all. JOHN A reflection of the points we made at the self care group. For this audience I want to stress the last point especially in relation to the following: Outcome may be less direct than for other LTCs some inherent impact on services anecdotal info not going to GP as often as CM able to answer questions commissioning language that people are not used to measuring unlike had clinical metrics We know there is an unmet need and as we get better at treatment and we have more survivors this need is going to grow. For survivors health and wellbeing is intertwined and as important when it comes to measuring impact Our service is likely to have some positive benefir in terms of reducing service use (can reference Alison’s team slides from our last meeting showing that people were saying that as CMs can asnswer many of their questions it is avoiding calls back to the CNS and visits to the GP) Not sure what we will show on admissions? Question for commissioners – will this be enough? How will they address a service that might meet a growing need but who’s social and economic benefit may be much wider than health It is exactly the sort of challenge that is raised by World Class Commissioning….next slide!

Service Improvement Lead, Pan Birmingham Cancer Network
Overview of test communities Finding a way in survivorship: The Birmingham Experience Bernie County Service Improvement Lead, Pan Birmingham Cancer Network

Finding a way in survivorship – The Birmingham Experience
Bernie County Service Improvement Lead Pan Birmingham Cancer Network

NCSI Adult Survivorship Workstreams
Immediate and Post Treatment & Self Management

Test community partners
NHS Birmingham East and North Heart of England Foundation Trust BEN provider arm Pfizer Health Solutions Macmillan Pan Birmingham Cancer Network

Why and How? Inpatients test site Focus groups (Apr and July 08)
Great service But A sense of isolation post treatment And Patients expectations of follow-up are different to clinicians Also Patients self limit themselves

Supportive self-management
Acute treatment phase Supportive self-management EOL Hospital professionals eg consultant, CNS Telephone support Community Cancer Nurse Patient choice GP Self-management education Services eg psycho-oncology Bridges Support groups Family/friends Information, co-ordination, communication,

Proposed testing at GHH
Telecare Holistic Needs Assessment Demand and capacity for psycho-oncology Self Management Post treatment group Network top tips document Care Management Assertive case management Reduction in hospital based follow-up Fail safe systems for recall for diagnostic tests Transfer of Care Document Bridges Integration of social care

Focus Group March 09 Positive feedback on suggestions
Some reservations about reducing hospital based follow-up

Breast Cancer Pathway PHS Telecare PSYCHOLOGY BRIDGES ACM Family
Key Areas of testing Breast Cancer Pathway Family History Clinic GP Other (A&E Self referral Recurrence Triple Assessment Diagnosis MDT Neo Adjuvant Treatment Plan Adjuvant Treatment Chemo Therapy Radio Therapy Other Surgery Chemo Therapy Radio Therapy Other Hormone Therapy ACM BRIDGES MDT PSYCHOLOGY Hormone Therapy PHS Telecare Hospital Follow Up Post Treatment Group Sept 09 Hospital Follow Up for 3 years Maximum Except Trials Patients Macmillan Supportive Self Care Hospital Follow Up 6/12 – 1 year For 5 years + /or 10 years if trials patients HOPE ADP

Challenges Complex Low starting point Four/five projects in one
Different agendas/priorities Moving the focus of care Recognising the stages in early survivorship

Opportunities Different starting points/dates Clearer evaluation
Four cohorts Hope course 1&2 Hope course plus telecare Telecare Bridges and ACM are needs based as so will be provided to those that require them

Does this fit QIPP? Quality Innovation Productivity Prevention
“This is all about quality” Andrew Donald (Chief Operating Officer NHS BEN) Removal of variation in current follow-up pathway already achieved Top tips booklet in circulation Innovation Transferring from long term conditions to cancer – seeing the whole person Shifting care to appropriate setting Productivity Releasing capacity in secondary care Prevention Earlier interventions – better results?

Next steps – the foundations
Recruiting to November Hope course Identifying clinicians for January advanced development course Recruiting care managers for Telecare launch February Finalising contract for Bridges

Thank You Thank You

Karen Roberts, Nurse Consultant
Overview of test communities A Health and Lifestyle Coaching Programme Following Cancer Treatment Karen Roberts, Nurse Consultant Sarah Rushbrooke, Cancer Nursing Modernisation Manager, North of England Cancer Network

A Health and Lifestyle Coaching Programme Following Cancer Treatment
North of England Cancer Network South of Tyne & Wear Project Sarah Rushbrooke Nursing Modernisation Manager NECN Karen Roberts Nurse Consultant Gateshead Health Foundation Trust

South of Tyne & Wear Pilot Project Aims
To understand more fully survivorship needs of people following a cancer diagnosis, and in particular, it's relationship to gender, age, health status and a social model of illness. To develop a supportive care programme for people who have had cancer to help them adapt and cope with life after treatment - using a coaching / cognitive behavioural therapy approach. To evaluate the pilot implementation of this programme on the adaptation and well-being of cancer survivors. To assess the acceptability of early discharge from secondary care cancer follow-up from users perspective and replacement with a self-care management model.

Objectives To determine if during the transition from cancer patient to cancer survivor, whether a health and lifestyle coaching programme can: Reduce anxiety in the post-treatment phase By focusing on health not illness, motivate people to change and improve their health in the future e.g.. stop smoking, lose weight etc Help patients become ‘people’ again, and facilitate this transition from cancer patient to whom they were prior to their illness

Deliverables & Management of the Project
Development of Steering Group Terms of Reference Establish role & responsibilities for 3 arms of the project Secure funding & appropriate allocation of funds NCSI monthly update via NHS Improvement

Programme Delivery 2 Health & Lifestyle Coaching Programmes will be delivered weekly over 8 weeks. There will be places for a maximum of 10 people, men and women, who have completed cancer treatment within the last three to six months. Recruitment of programme participants will come from a referral from the key worker and the first programme commenced on 10th September 2009

Location The location of the Health & Lifestyle Coaching Programme will be within the community and outside of ‘health’ premises, for example within a village hall, library or community centre. This will support the programme philosophy regarding adaptation and not being labelled as ‘ill’ or ‘a cancer patient’.

Bensham Grove Community Centre

Where, when and who of survivorship care?
Cancer Unit Cancer Centre Partnership working, across professional and organisational boundaries. Does it have a tariff? Patient Primary care 125

What do people want after cancer treatment?
2007 Focus group work (n=18) to ask people what did they need during recovery Information needs changed from ‘illness’ to ‘wellness’. Identity – not a ‘cancer patient’ or even a ‘survivor’ but being ME. Coping with anxiety about health. Understanding emotional impact and how it made them feel (which affected others around them). Help to adapt to the changes in their lives and being able to plan for the future.

Shaping the future Identity – who am I now? Self-narrative
Past, present and future are inextricably liked (and affect how individuals view and react to illness) The pain of uncertainty (and an uncertain future) Managing risk (recurrence, rejection, social ) Different perspectives -- patient -- her partner -- the professionals

Health and Lifestyle Coaching
A coming together of coaching and CBT using the current evidence base and models for practice. (NOT therapy) A focus on wellbeing not illness or symptoms. A partnership between cancer and mental health services. Creating a learning community. A skills based programme. Building strength and resilience – it can be learned with practice.

Personal resilience escalator model (Rao, 2009)
Thrive Skillful actions Adaptive beliefs and strengths Values focus Escalating resilience Personal meaning Surviving negative emotions Adversity Getting through skills Future oriented skills

Evaluation - the more we look…. the more we find

National Cancer Survivorship Initiative Central Hall, Westminster Monday 21 September 2009

Open space workshops Workshop Workshop Lead Room
Assessment and Care Planning Ciaran Devane Noeline Young Maggie Wilcox Great Hall (main conference room) (3rd floor) Active and Advanced Disease Steven Wibberley Tariq White Amanda Whetstone George Thomas Room (1st floor) Consequences of treatment Alastair Munro Jervoise Andreyev Chris Steele Penny Vickery Robert Perks Room Self Management Jessica Corner Lynn Batehup Lecture Hall Work and Finance Barbara Wilson Duleep Allirajah William Sangster Room (2nd floor) Children and Young People Carole Easton Patricia Morris Adam Glaser Emily Bird Andrew Cooper Donald English

WORKSHOP 1 SLIDES for Great Hall

But how many have a care plan for survivorship?
Two Million Survivors But how many have a care plan for survivorship? “My cancer experience was really stressful as I’m self-employed and have had a lot of work worries. I’ve finished treatment but the hardest part about the cancer now is how it has affected me mentally.’ I’m convinced that every ache or pain that I get is the cancer returning.” Anthony. Testicular cancer 2007

Assessment and Care Planning Workstream
Assessment and care planning at key stages in the cancer journey ensures that patients needs are identified and met. Is an active partnership between professionals, patients and carers Happen at key transition points in the cancer journey or when triggered by patients This will enable personalised patient centred care focusing on priorities Sharing information between professionals avoids unnecessary delays and duplication and gives patients a better quality of experience “I’ve learnt that survivorship is all about living with the emotional and physical effects of a cancer diagnosis.” Beth, cervical cancer in 2005 138

What has the workstream been doing?
Developed the assessment and care planning framework Developed and testing Treatment Summary Record for acute teams to complete and send to GPs Auditing effectiveness of GP 6 month cancer review Following point one – Currently out to tender for pilot sites for assessment and care planning anyone interested please contact us details on next slide 139

Next Steps Select test communities
Explore changes to follow up systems Expand testing of treatment summary records Develop resources to help GPs ensure the effectiveness of their 6 month cancer reviews Point 1 - who will pilot assessment framework over a 6 month period Point 2 – changes that will increase the quality of the patient experience and enhance productivity, make good use of resources. This phase will include including piloting post treatment clinics. 140

Our aim is to ensure two million survivors have a care plan
If you are interested in becoming a pilot site Or currently use a careplan for survivorship we are interested in hearing from you – please contact Noeline Young

Two Million Survivors But how many GPs are aware of the treatment that their patients have received and their survivorship care plan? Expand on the GPs need for more information that enables involvement in the care of cancer patients 142

Assessment and Care Planning Workstream
Through mapping GPs have identified a need for more information about care and treatment: Details and Staging of disease Consequences of treatment Risk stratification and possible symptoms of recurrence How people can get back into the system Initial side effects and late effects of treatment Psychological impact, how has the diagnosis affected patient and carer Social needs Carers needs 143

Developed a Treatment Record Summary To be sent on the completion of treatment from the treating clinician to the patient & GP Currently at pre-pilot stage Point 1. a small number of clinicians are currently trialling this format of reporting prior to it being rolled out for piloting. 144

But how successfully does the GP Cancer Care review meet their needs?
Two Million Survivors But how successfully does the GP Cancer Care review meet their needs? We don’t have all the answers but we have made progress. Why not come along and see what we have achieved. We need you to share your ideas and experience. Don’t miss this opportunity to have your say. 145

Auditing the impact of the Cancer Care review which GPs carry out with patients 6 months after receipt of diagnosis. To inform the effectiveness of the review Point 1. a small number of clinicians are currently trialling this format of reporting prior to it being rolled out for piloting. 146

But how does Follow Up care need to change to meet their needs?
Two Million Survivors But how does Follow Up care need to change to meet their needs? We don’t have all the answers but we have made progress. Why not come along and see what we have achieved. We need you to share your ideas and experience. Don’t miss this opportunity to have your say. 147

Reviewed the current forms of follow-up care Considered follow-up care in relation to risk stratification Reviewing pilot sites and hospitals offering alternatives to follow-up care Currently considering the benefits of a post treatment clinic Plan to pilot post treatment clinics in 2010

Post Treatment Clinics
A post treatment clinic would provide the opportunity to inform and educate patients about the clinical aspects and the ongoing management of their disease It would provide information about local facilities and support groups Access to support and information related to returning to work, financial benefits and social support

National Cancer Survivorship Initiative Central Hall, Westminster Monday 21 September 2009 Open space workshop Open space workshop

Open space workshop Workshop Workshop Lead Room
Assessment and Care Planning Ciaran Devane Noeline Young Maggie Wilcox Great Hall (main conference room) (3rd floor) Active and Advanced Disease Steven Wibberley Tariq White Amanda Whetstone George Thomas Room (1st floor) Consequences of treatment Alastair Munro Jervoise Andreyev Chris Steele Penny Vickery Robert Perks Room Self Management Jessica Corner Lynn Batehup Lecture Hall Work and Finance Barbara Wilson Duleep Allirajah William Sangster Room (2nd floor) Children and Young People Carole Easton Patricia Morris Adam Glaser Emily Bird Andrew Cooper Donald English

Workshop feedback & Q&A Workshop feedback & Q&A
National Cancer Survivorship Initiative Central Hall, Westminster Monday 21 September 2009 Workshop feedback & Q&A Workshop feedback & Q&A

Mike Richards & Ciarán Devane
Closing remarks Mike Richards & Ciarán Devane Co-Chairs, NCSI

National Cancer Director
Closing remarks Mike Richards National Cancer Director

Chief Executive, Macmillan Cancer Support
Closing remarks Ciarán Devane Chief Executive, Macmillan Cancer Support

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