Survivorship Update February 2012 Steve Hindle Macmillan Survivorship Programme Lead

National Cancer Survivorship Initiative (NCSI) Vision The‍ vision ‍of the‍ NCSI‍ is‍ that ‍by‍ 2012, ‍those‍ living‍ with ‍and ‍beyond‍ cancer‍ are‍ supported‍ to live as healthy and active a life as possible ‍for‍ as‍ long‍ as‍ possible. Set in the context of widespread change to commissioning and the ‘Listening Exercise

What do we know Evidence of what the problems are How many cancer survivors, and where they are in their experience of cancer PROMs will show how many people have what problems (March 2012) Designed and testing evidence-based sustainable services Economic evidence Mapped to NHS Outcomes Framework Set in the context of widespread change to commissioning and the ‘Listening Exercise

NCSI: where we are in the initiative cycle Implement Engagement with clinicians & commissioners Innovate Investigate 2009 2015 Time We are here

Emerging principles Personalised pathways of care, rather than one size fits all, using risk stratification approach Many people can be encouraged to self manage with support , with rapid access to professionals when needed Importance of holistic assessment leading to care plan to meet the individual’s personal circumstances Information provision to meet individual needs, timely, promoting confidence and choice 5 5

Key messages Current services are not meeting patients needs, and will not be able to cope with future numbers. Through investment in new models of aftercare for cancer survivors, there are opportunities to improve quality and efficiency of services. Assessment and care planning will personalise care and can make significant differences to patient quality of life. Supported self management can improve the quality of life for survivors Good survivorship care requires timely communication across health and social care boundaries 6 6

3 Levels of care and support

NCSI Prototypes NHS Improvement leading testing of risk stratified pathways in 8 prototype communities across 15 projects in Breast, Colorectal, Lung, Prostate. Testing enablers of remote monitoring and care coordination. Ipsos MORI baseline report out now on NHS Improvement website Final report March 2012. NHS Improvement - Cancer Effective follow up: Testing risk stratified pathways May 2011

Care coordination Remote surveillance ‘I need to know my patient’s treatment and care is safe’ ‘I want to be treated as a person and know who to contact when I need help’

Assessment and care planning ‘No one asked me what I thought was important’ 75% of patients did not know if they had a care plan Picker 2009 Piloted assessment and care planning 2009/10 Treatment summary tested - available to implement Cancer Care Review templates available Testing electronic solutions to assessment and care planning Assessment and Care planning now a Peer Review measure 1. The activities and skills which enable this include (with their clinicians) joint agenda setting and goal setting; building their knowledge and skills about their condition and self management; (health literacy) following their goals over time – increases confidence – self efficacy. These are achieved – through planned courses / tailored information;/ clinician skills to promote through their consultations; and changing the health care system so that it enables empowerment and control; and ongoing support in some form. 2. The greatest impact on increasing confidence to self manage – and adopt new behaviours will be achieved through changing the roles of clinicians and patients.. Clinicians becoming enablers as well as ‘experts’ and patients shifting from passive to taking more responsibility. Developing skills in motivational interviewing will encourage and support patient activation., skills for supporting behaviour change will support challenging lifestyle changes. BEHAVIOUR CHANGE IS REQUIRED ON THE PART OF BOTH CLINICIANS AND PATIENTS. 3. Utilising a project manager to support service improvement. Finding and supporting key clinical champions (note supporting because they are usually out on their own and are frequently challenged, anxious, unskilled at change; and with little time to do all the necessary activities which make a difference) Changing the policies procedures ways of working is one major area of work; but cultural change takes place through values principles and symbols such as logos; as well as new behaviours commitments and identities. Not aiming to change the whole organisation–only at team level!

Self management support ‘I didn’t know what I could do to help myself’ 1 in 3 patients reported 5 moderate / severe unmet needs at end of treatment - for 60% this had not improved 6 months after treatment, Armes et al 2009 Involves approaches which empower and activate people so that they feel confident about managing their condition and are more likely to change/alter their behaviour. ‘activating’ people so that they can use information and support to manage their health and alter behaviours. Re/skill/train clinicians to take a supportive ‘power sharing’ rather than a ‘power holding’ approach. Use service improvement expertise to make changes. Testing at Southampton University Hospital Trust. 1. The activities and skills which enable this include (with their clinicians) joint agenda setting and goal setting; building their knowledge and skills about their condition and self management; (health literacy) following their goals over time – increases confidence – self efficacy. These are achieved – through planned courses / tailored information;/ clinician skills to promote through their consultations; and changing the health care system so that it enables empowerment and control; and ongoing support in some form. 2. The greatest impact on increasing confidence to self manage – and adopt new behaviours will be achieved through changing the roles of clinicians and patients.. Clinicians becoming enablers as well as ‘experts’ and patients shifting from passive to taking more responsibility. Developing skills in motivational interviewing will encourage and support patient activation., skills for supporting behaviour change will support challenging lifestyle changes. BEHAVIOUR CHANGE IS REQUIRED ON THE PART OF BOTH CLINICIANS AND PATIENTS. 3. Utilising a project manager to support service improvement. Finding and supporting key clinical champions (note supporting because they are usually out on their own and are frequently challenged, anxious, unskilled at change; and with little time to do all the necessary activities which make a difference) Changing the policies procedures ways of working is one major area of work; but cultural change takes place through values principles and symbols such as logos; as well as new behaviours commitments and identities. Not aiming to change the whole organisation–only at team level!

Health and Well Being Clinics - 15 pilots 2010/11 Half day event to help patients manage transition at end of treatment. Information re signs and symptoms, signposting to services, support and discussion. Increased patients’ knowledge and confidence, knew which services to use, ‘I felt abandoned and we didn’t know where to turn’ Macmillan HWB survey 2008

Physical activity ‘I know that physical activity could help me’ Helps with treatment effects inc. fatigue, depression Physical activity influences breast, colorectal and prostate mortality and recurrence 12 week pilot - breast cancer survivors active in/after treatment saved NHS £1500 in 6 months ‘Move More’ campaign

Heart failure & breast cancer More chronic conditions Heart failure & breast cancer OR: 1.33 Nada Khan In press BJC *Adjusted for BMI, smoking Matched to non-cancer survivor controls on the basis of age, sex and practice

osteoporosis & prostate cancer More other chronic conditions osteoporosis & prostate cancer OR: 1.59 Nada Khan In press BJC *Adjusted for smoking and underweight Matched to non-cancer survivor controls on the basis of age, sex and practice

Consequences of cancer treatment ‘I know about potential problems, how to recognise them and get help, and professionals understand there can be solutions.’ Informing patients eg promoting use of Macmillan Radiotherapy booklets, testing web based Oncolink Enabling non specialists to recognise eg Launch BSG guidance for professionals Q4 Developing specialist services eg for complex late effects of pelvic treatment across 3 sites Understanding patterns eg linking data sets to give ‘NHS footprint’ for patients

New chronic conditions RT & CT related illnesses e.g pelvic cancers ? 17,000/ year pelvic RT (UK) gynaecological, urological, colorectal, anal cancers 80,000 living after pelvic RT Bowel, urinary, sexual issues

‘‘My oncologist asked how I was – how embarrassing to tell him.’ ‘My GP says for a long time he did not know what was going on…I thought I was making a fuss.’ ‘It’s the little things put together that wear us down’ ‘‘My oncologist asked how I was – how embarrassing to tell him.’

Consequences of Cancer Treatment Collaborative (CCAT) http://www.cancerconsequences.org/index.html 12 Post Doc nurses & AHPS taking the agenda forward. To improve care for people living with the effects of cancer Bridge the gap between research and practice Individual and collective projects Influencing UK research and policy agenda

NCSI Vocational Rehabilitation model (draft) ‘No one gave me advice and I lost my job’ LYN TO LEAD PROJECT OBJECTIVES AROSE FROM NCSI WORK AND FINANCE WORKSTREAM - THIS GROUP LOOKED AT THE CURRENT VR SERVICES AND WORK SUPPORT AVAILABLE TO PEOPLE WITH CANCER AND FOUND THAT THERE WAS VERY LITTLE AVAILABLE – AS A RESULT A STRATEGY DOCUMENT WAS WRITTEN WHICH INCLUDED A FOUR LEVEL MODEL – RECOMMENDATIONS WERE MADE THAT THERE SHOULD BE A PROJECT SET UP TO TEST THIS MODEL AND HENCE THE VR PROJECT WAS BORN REQUESTS FOR ORGANISATIONS TO PILOT THE VR SERVICE WERE SENT OUT AND A SHORTLISTING PROCESS IDENTIFIED SEVEN PILOT SITES TO GO FORWARD – MOVE TO NEXT SLIDE FOR EXPLANATION OF THE MODEL

Survivorship Patient Reported Outcomes Measures (PROMs) Pilot PROMs survey to understand: - outcomes for people following cancer treatment over time; - their quality of life - variations in outcomes e.g. co-morbidities; - Eg how many colorectal cancer patients cannot control their bowels years after treatment? 4992 questionnaires sent, response rate = 68% Reports March 2012 DH hope to further develop PROMS Survey, potential national roll-out 2012.

Success measures ‘How will we know that the NCSI has made a difference?’ Improving Outcomes: A Strategy for Cancer (DH 2011) Reduce % survivors with unmet physical, psychological, social needs Increase % cancer survivors able to live independently / able to work who had cancer as a child or young person now in education/ employment Economic evidence PROMS Evaluations More to be done

Identifying the cancer care pathway Diagnosis & Treatment Rehabilitation Early monitoring Later monitoring Progressive illness* End of life care [Year 1 deaths] Newly diagnosed – assumed need of acute sector care Surviving the first year – assumed need of rehabilitation Up to 5 and 10 years from diagnosis – designated as ‘early monitoring’ Beyond 10 years from diagnosis – designated ‘later monitoring’ Incurable disease but not in last year of life – assumed need more treatment and support End of life care in last year – subset of deaths in first year of diagnosis Understanding the number of people diagnosed with primary and secondary cancer is valuable information which can be used to inform service planning, treatment provision and support for people at the right time in the right place as demand grows over time.   Little data are routinely reported by cancer registries about cancer survivors. This amplifies the assumption that cancer survivors have no particular needs requiring specific resources. The lack of segmentation of the population of survivors into different groups based on their need for services has hampered the progress of the survivorship programme. We aim to estimate the number of people likely to be in a given phase of the care pathway in a given year We identify five main phases on the care pathway: diagnosis and treatment (assumed to be the year from diagnosis) rehabilitation (assumed to be the year after treatment estimated as the second year after diagnosis) monitoring (includes those at risk of recurrence or treatment complications but with no active cancer or treatment related illness, and is split here between early and later monitoring) progressive illness (includes incurable cancer, but not those in the last year of life, and significant treatment related illness) end of life (includes those in the last year of life presented with a subset diagnosed in the same year). We aim to estimate the number of people likely to be in a given phase of the care pathway in a given year * The numbers in the progressive illness group will be underestimated and the numbers in the monitoring groups will be overestimated as estimates for significant late effects have not been made. 23 23

Cancer which has spread

Cancer which is incurable Chronic phase Multiple courses of chemotherapy Actively managing end of life Even though someone has incurable cancer, that person can live a good quality of life for a number of years. This group is currently unrecognised.

Recurrent cancer & the need for early treatment with chemotherapy ? 0.00 0.25 0.50 0.75 1.00 Proportion surviving 6 12 18 24 30 36 42 48 54 60 Months since randomisation Early Delayed This graph shows that whether you have treatment ASAP or whether you wait until the symptoms are unmanageable to have treatment, your length of survival is the same. Plus, further research shows that your quality of life would be worse if you’re treated straight away. Ovarian cancer (OVO 5) Same Survival early cancer treatment or wait for symptoms (Rustin et al 2009)

Palliative care can improve survival as much as chemotherapy

Breast cancer care pathway – estimating the number of women in the UK, 2008* Colorectal cancer care pathway – estimating the number of people in the UK, 2008* Lung cancer care pathway – estimating the number of people in the UK, 2008* As noted this is work in progress so numbers could change as we refine the model. Data for the UK are presented here highlighting the differences between the cancer types in terms of the potential need for support across the pathway. These differences are mainly explained by the survival and prognosis of each of the cancer but demand for the future will be driven by the continues increases in new cases of cancer. The current focus of cancer care is on initial diagnosis and treatment and the last year of life. There is an assumption that the remaining group of cancer survivors have either no health care needs or the same health care needs as each other and the rest of the population. Consequently the majority of people with a cancer diagnosis may not be identified by health providers as requiring support. We estimate that this current focus could exclude the majority of women with breast cancer and people with colorectal cancer, as well as a significant proportion of people with lung cancer. These people could benefit from rehabilitative support or require care for progressive illness from secondary cancer or late effects of the cancer or its treatment. Data notes: * For each cancer type the size of the boxes reflect the approximate proportion of people in each phase (but there is double counting for people who are diagnosed and die in the same year). Median survival for incurable disease was taken from Frontier Economics (2010) and is 3 years for breast, 2.5 years for colorectal; and 1 year for lung cancer. Estimates for progressive illness for lung cancer have not been made. Estimates for later monitoring for lung cancer exclude 8,000 males >20 years from diagnosis. The total for men in this group was thought to be an overestimate and is likely to be nearer 6,000 than the modelled 14,000. See Maddams J, et al. 2009.   Sources: Office for National Statistics; Information Services Division (ISD) Scotland; Welsh Cancer Intelligence & Surveillance Unit; Northern Ireland Cancer Registry; Maddams J, et al. Cancer prevalence in the United Kingdom: estimates for 2008. British Journal of Cancer. 2009. 101: 541-547; Cancer Research UK. Cancer mortality - UK statistics (Nov 2010); Frontier Economics. (2010) One to one support for cancer patients: A report prepared for Department of Health