National Cancer Survivorship Initiative June 2010

The number of cancer survivors is growing There are now 1.77 million people living in England having had a diagnosis of cancer - over 2 million in the UK. Of the 2 million -1.24 million had their diagnosis more than 5 years ago. The number of survivors is growing by 3.2% a year. By 2030, there will be over 3 million people in England living with or beyond cancer. Table 1: Estimated figures for 2010 and 2030 England UK 2010 1.77 million 2.13 million 2030 3.33 million 4.0 million Estimated figures for 2010 and 2030 calculated based upon a 3.2% annual increase in cancer prevalence in the UK, based upon estimates for 2008 J Maddams, D Brewster, A Gavin, J Steward, J Elliott, M Utley & H Moller, Br J Cancer 2009 101:541-547

Who are the two million cancer survivors? (2008, UK) Sex / Site Cancer survivors % Male 819,188 40 Female 1,183,328 60 Colorectal 235,816 12 Lung 63,522 3 Breast 548,998 28 Prostate 253,436 Other 900,744 45 Cancer prevalence in the United Kingdom: estimates for 2008 J Maddams et al Br J Cancer 2009 101: 541-547

I survived my cancer, what happens to me now? Many people will live long and healthy lives following cancer. Some may have a range of significant physical, psychological or social needs following cancer. People can be left with short or long-term consequences either of the cancer itself or from treatments used to eradicate it. Others may live with chronic or incurable cancer for many years.

Cancer Survivors have a range of unmet needs A 2009 Picker survey of over 2,000 survivors found that: 43% wanted more information and advice, 75% did not have or did not know if they had a care plan, and 75% did not know who to contact for advice outside of office hours.

Cancer Survivors have a range of unmet needs The Health and well-being profile of the cancer survivor population (without active cancer) is comparable to people with a chronic condition such as diabetes or arthritis. A Macmillan survey in 2008 found that 90% of cancer survivors had visited a GP in the last 12 months, compared to 68% of the wider population Some of these health and wellbeing issues can be attributed to the consequences of cancer treatment. Studies of patients after pelvic radiotherapy suggest 50% of patients are left with bowel problems affecting quality of life and 30% state that these bowel problems have a moderate or severe impact. 60% of childhood cancer survivors experience one or more late effects of treatment 10 years following treatment.

Current follow up arrangements are not meeting the needs of survivors A recent study of over 1,000 patients at 66 UK centres found that 30% of patients reported five moderate or severe unmet needs at the end of treatment and for 60% of these patients, these needs had not improved 6 months after treatment (Armes et al, JCO, 2009) Current face-to-face out patient follow up is not meeting patients’ needs, isn’t good value for money, and won’t cope with increasing numbers. Routine follow up appointments are not effective in terms of detection of recurrence. In practice the large majority of recurrences are detected either by patients themselves or on investigations which can be planned without a patient having to attend a clinic. Models of aftercare support for the majority of cancer survivors are generic with other long-term conditions. In some areas, specialist cancer specific services and programmes are needed. The current model of follow up care for cancer survivors is unsustainable.

National Cancer Survivorship Initiative The NCSI was announced in the Cancer Reform Strategy. Launched in 2008. In July 2010 Ministers asked National Cancer Director, Professor Sir Mike Richards, to lead a review of the CRS. The review will be published at the end of 2010 and will set the future direction for cancer services based on the ambition set out in the White Paper Equity and excellence: Liberating the NHS The NCSI is led by the Department of Health and Macmillan Cancer Support, supported by NHS Improvement. The aim of the NCSI is, by 2012, to have taken the necessary steps to ensure that those living with and beyond cancer get the care and support they need to lead as healthy and active a life as possible, for as long as possible.

National Cancer Survivorship Initiative Vision

National Cancer Survivorship Initiative Vision The NCSI Vision Document (published 19 January 2010) set out the initiative’s vision for improved cancer care: People living with and beyond cancer have a personalised assessment and care plan and are empowered to manage their condition, based on their needs and preferences. People are informed and prepared for the long-term effects of living with and beyond cancer. Health and care services are responsive to individual needs and ensure access to specialist care when needed.

To achieve that vision, the NCSI proposes 5 shifts The NCSI Vision document set out five key shifts to improve care and support : a cultural shift in the approach to care and support to a greater focus on recovery, health and well-being after cancer treatment. a shift towards assessment, information provision and personalised care planning. a shift towards support for self-management, based on needs and preferences with appropriate assessment, support and treatment. a shift from a single model of clinical follow up to tailored support that enables early recognition and preparation for the consequences of treatment or signs of further disease. a shift towards measuring experience and outcomes for cancer survivors through Patient Reported Outcome & Experience Measures. 

The NCSI is developing key messages and evidence to support implementation of the five shifts The NCSI is seeking to demonstrate that: There are opportunities to improve quality and efficiency of services through investment in new models of aftercare for cancer survivors This requires commissioning risk stratified pathways of care rather than specific activities. A risk-stratified approach will mean that 60–70% of cancer survivors can be supported through supported self management rather than the current follow up model. Models of aftercare support for the majority of cancer survivors in these groups are similar to those used for other long-term conditions Early experience suggests that 15-25% of survivors will still require regular face to face monitoring or guided care. A small proportion of survivors (5 – 10%) currently have unmet needs requiring new specialist services, for example for severe and complex consequences of cancer treatment. Proportions will vary according to tumour type. Assessment and care planning is key to providing appropriate support Supported self management and physical activity interventions improve quality of life and are cost effective. There is evidence to demonstrate enhanced motivation of cancer survivors to health behavioural change following treatment. Where patients have the appropriate preparation and routes back in to the system, self-management has been well received by patients.

Risk Stratification A risk-stratified approach to managing those living following treatment for cancer

Emerging evidence: Physical activity Range of evidence of the benefits of physical activity for cancer survivors on improving quality of life, reducing recurrence and mortality: More than 3 hours MET activity per week associated with decreased risk from adverse breast cancer outcome. Specifically women with highest levels of activity up to 50% risk reduction in mortality (Nurses Health Study, Holmes et al, JAMA, 2005) Functional and psychological benefit of a 12 week programme for breast cancer patients (RCT, Campbell et al, BMJ 2007) Emerging evidence of efficiency benefits for NHS: Reductions in admissions and GP visits associated with participation in an exercise programme (RCT, Campbell et al, BMJ 2007) The Bournemouth After Cancer Survivorship Project (BACSUP) delivered an individualised 3-month physical activity programme; Living Active & Well Programme, to 200 cancer survivors (breast, colorectal and melanoma) following treatment. The aim was to promote physical, psychological, social and spiritual health and wellbeing, including strategies for living with and beyond cancer. Preliminary results using quality of life tools suggest a trend towards improvement between pre and post intervention scores.

Emerging evidence: Test communities There has been much activity to test concepts and service redesign to gather the evidence to create guidance for commissioners to inform planning for 2011/12 From September 2010 testing will focus on a small number of sites testing whole pathways of care There are 27 adult and 9 children and young people test communities testing new models of care and support, and assessment and care planning, supported by NHS Improvement. These will demonstrate the potential to improve experience of care and quality of life through assessment and care planning, and improved care and support for survivors of childhood and adult cancer.

Adult test communities: the improvement story so far

Adult test communities: test site updates NHS Birmingham East and North Health Economy: Bridges The Bridges Support Service has been supporting people with cancer in other parts of the West Midlands for over nine years. Bridges is a registered charity and for this pilot is funded by BEN NHS and Macmillan Cancer Support. Bridges’ person centred approach, which includes narrative based assessments means care and support is tailored to individual’s needs. The service literally is a bridge to access services from health, social and community organisation and where there are gaps Bridges will spot purchase services to provide appropriate support. The service has been developed to support the forecasted number of 150 new people receiving a breast cancer diagnosis at Good Hope Hospital and those people already being treated who would need some kind of support from Bridges. It was anticipated that the greatest support need would be transport to enable people to access hospital appointment and treatment. This has been the case and most of the people who have been supported have required transport with over 150 transport journeys provided for patients. Domestic care has been very much appreciated to support people to maximise their quality of life and ensure they can remain at home during treatment.

Adult test communities: test site updates Brighton and Sussex University Hospital NHS Trust: Multi-disciplinary Combined Cancer Clinic for lung cancer patients A process mapping exercise led to a newly designed pathway incorporating a weekly multidisciplinary Combined Cancer Clinic (CCC) within the Sussex Cancer Centre at BSUH, where patients at any stage in their treatment pathway post-diagnosis have a holistic assessment carried out. The clinic is more flexible to suit patients’ needs, allowing them to trigger an appointment or cancel if not required and rebook for a later date. During the consultation a Treatment Record Summary (TRS) is produced which is given to the patient and their GP within 24hrs. The patient also has a detailed assessment and care plan (ACP) completed by the specialist nurses. All documents are in a patient-held record. Non elective emergencies appear to be reducing compared to previous years. Of those patients admitted between February and May 2010 none were patients who had received care through the new service suggesting that we are helping to avoid unscheduled admissions. As a result of the setting of the clinic and the increased time allotted to each patient, we have been able to carry out certain procedures in the cancer centre (e.g. pleural aspiration), thereby avoiding need for emergency admission or re-attendance at a later date for an outpatient procedure, all of which patients have found distressing. Staff and patients have given very positive feedback. Further development of the CCC will see the inclusion of a dedicated oncologist and a thoracic surgeon.

Multi-disciplinary Combined Cancer Clinic for lung cancer patients

Adult test communities: an overview of testing

Children & Young People test communities: update

Children & Young People test communities: update 17 sites now involved in CYP testing of ‘models of care’ Evaluation exercise is now underway (early information will be available in September 2010) Evidence and key principles will be presented at the CYP National Workshop September 2010 to inform commissioners Prototyping phase will start in early 2011 Headlines CLIC Sargent Policy Review final report and recommendations expected July 2010 Outcomes from the 7-13 year old Consultation Exercise (March 2010) will be taken into account in the evidence for September 2010 Sheffield – Texting Follow up Service has shown reduction in DNAs Cambridge – exercise programme supporting patients during treatment shows improvement in levels of fatigue Details of ‘improvement stories’ can be found in March 2010 publication Providing the Evidence and the updated version in September 2010.

Next steps The work of building the evidence continues with the next key activity being ‘prototyping’ of risk-stratified pathways of care, which can demonstrate: increased numbers of patients with a care plan, reduction in outpatient visits and reductions in avoidable A&E attendances and admissions The NCSI is establishing the cost to the NHS and patients of the current follow up model. The NCSI are also seeking to analyse the secondary and primary health care and social care costs following cancer treatment. This will be contrasted with modelling the cost benefits of the new models of care Three main areas of potential efficiencies have been identified; more effective planning resulting in fewer cancer bed days, a reduction in ‘empty’ out patient appointments, and savings to the wider economy, of people supported to return to work earlier.

Pathway modelling Based on a risk-stratified approach the NCSI proposes 3 pathway models for supported self-management, planned coordinated care and complex care. Between June and August 2010 the NCSI held a series of survivorship pathway workshops to work through these proposed pathways looking at the 6 common cancers Specific issues addressed at the workshops include: - Risk stratification and personalised assessment - Setting and follow-up (community, hospital, integrated pathway) - Rapid return/re-entry into appropriate parts of the health system - Automated surveillance, PROMS and PREMS - Rapid review MDT for recurrent/progressive disease - Smooth and timely transition to end of life care - Methodology for generating treatment summaries and care plans - Implications to services of decreased follow-up appointments - Education requirements for workforce - Role of one-to-one worker

Proposed pathway models of care

Proposed pathway models of care

Proposed pathway models of care