Macmillan Cancer Support Recovery Package Change Project Manager Recovery Package- the way forward The changing nature of cancer, the growing need for support from people living with and beyond cancer, and the priority areas for action, with particular focus on the Recovery Package Sandra Rowlands Macmillan Cancer Support Recovery Package Change Project Manager

The cancer story is changing Improvements in early detection and diagnosis More advanced treatments Move from acute to long term condition Increasing numbers of people living with and beyond cancer Maddams J, Utley M, Moller H. Projections of cancer prevalence in the United Kingdom, 2010-2040. Br J Cancer 2012; 107: 1195-1202.

The survival rates are changing Macmillan Cancer Support (2011) identified median survival times based on research by the Cancer Research UK Cancer Survival Group at the London School of Hygiene and Tropical Medicine research.

The survival rates are changing Total Prevalence - now Total Prevalence - 2030 This slide shows the growth in total cancer prevalence over the next 20 years. It’s important to note that the cancer pathway and numbers of people surviving in each phase in this pathway varies greatly between different cancer types – this is a rough estimate of possible numbers and change for all cancers. We also know that the number of people who are at some stage of the pathway will grow to 4 million by 2030. This growth is partly due to more people being diagnosed per year, but mostly due to increased survival and life expectancy. We estimate here based on published recent prevalence trends and projected incidence and mortality to show how the numbers of people in each phase may change by 2030. Current time limited prevalence rates (i.e. 5yr, 10yr etc prevalence rates) suggest that long term survivors will continue to increase at a higher rate meaning that the number of people living with cancer more than 5 and 10 years after diagnosis will see a bigger increase Maddams J, Utley M, Moller H. Projections of cancer prevalence in the United Kingdom, 2010-2040. Br J Cancer 2012; 107: 1195-1202.

Not everyone is living well 1 in 4 deal with the consequences of their treatment 1 in 2 cancer patients have two or more comorbidities Macmillan Cancer Support (2013). Cured – but at what cost? Walkington L. Patterns of breast cancer recurrence and associated health care costs of 1000 patients treated in Leeds: a longitudinal study. June 2012 – Submitted as a research abstract to the National Cancer Intelligence Network ‘Cancer Outcomes Conference’. Macmillan Cancer Support (2009) It’s no life. Living with the long-term effects of cancer. De Boer et al (2009). Cancer survivors and unemployment: a meta-analysis and meta-regression. JAMA. 301: 753-762.

Cancer Patient Experience Survey 2014 The results of the 2012/13 CPES showed that improvements are needed on: Care planning.  Before starting treatment almost half of patients (45%) were not fully informed about side effects that could affect them in future.  Almost four in five (78%) were not offered a written assessment and care plan, and around four in ten (41%) were not given enough support from health and social services after leaving hospital. Financial support.  Although significant improvement has been made since the first survey in 2010, almost half of patients (46%) who would have liked information about how to get financial help or any benefits, are still not receiving this. Relational care.  Relational care such as communication, trusting nurses and being treated with dignity and respect is essential for cancer patients.  However, 42% of respondents said that not all doctors and nurses asked what name they preferred to be called by. Patients have also reported that they are not experiencing a seamless coordinated journey, yet this is a key element that makes up good patient experience.  Cancer patients come into contact with a wide range of clinicians, nurses and organisations both in hospital and in the community at different transition points, for example when patients are referred by their consultant to get diagnostic tests.  People have told Macmillan, that they felt abandoned after treatment.   In addition, unacceptable variations of cancer care and patient experience continue across the country.  This includes dissimilar care in terms of quality between common and rarer cancer types and in geographical areas.  For instance, the worst performing trust continue to be in London.   Messages around solutions To improve the experiences of cancer patients Macmillan urges: •             The Department of Health to make the improvement of 'relational care' a priority area within the NHS Mandate. •             The Care Quality Commission and the Chief Inspector of Hospitals to ensure patient experience data is a key measure for performance in hospital inspections. •             NHS England to develop measures to hold Clinical Commissioning Groups to account on cancer patient experience through local accountability frameworks.

Cancer and other morbidities Source: Macmillan’s Routes from Diagnosis programme

England cancer survivorship numbers 1.8 million increasing to 3 million: the projected increase in cancer survivors by 2030 47.3% of survivors express fear of their cancer recurring 40% of prostate cancer survivors report urinary leakage 19% of colorectal cancer patients report difficulty controlling their bowels 24% of people were offered a written assessment and care plan (averaged across trusts) 2.4 million follow up appointments for clinical and medical oncology in 2011-12

The English National Cancer Survivorship Initiative Cumberland Lodge – Understanding the needs - Following the Cancer Reform Strategy in 2007, we held an event with an influential and expert community including professionals, service providers, academics and users at Cumberland Lodge in 2008 to help define what we meant by ‘living with and beyond cancer’. This event helped develop our understanding of what we knew and what was unknown, and stimulated discussion about areas for improvement. Armes et al – supported by subsequent PROMs data

Published 2010 5 Shifts A cultural shift in the approach to care and support for people affected by cancer – to a greater focus on recover, health and well-being after cancer treatment A shift towards assessment, information provision and personalised care planning. This is a shift from a one-size fits all approach to follow up to personalised care planning based on assessment of individual risks. A shift towards support for self-management. This is a shift from a clinically led approach to follow up care to supported self-management, based on individual needs and preferences and with the appropriate clinical support and treatment. A shift from a single model of clinical follow up to tailored support that enables early recognition of signs and symptoms of further disease. A shift from an emphasis on measuring clinical activity to a new emphasis on measuring experience and outcomes for cancer survivors through routine use of Patient Reported Outcomes Measures in aftercare services.

Key Messages A shift in professional culture is essential to enable supported self management. New models of cancer aftercare gives opportunities to improve quality and reduce cost. Many people can self manage their health with support, with rapid access to professionals when needed. There is significant unmet need arising from consequences of treatment, which can be successfully addressed through prevention and treatment. Good survivorship care requires timely communication across boundaries.

The Five Survivorship Stages Underpinning the recommendations in 2013 NCSI document is the need to promote a cultural shift in professionals towards shared decision making and supporting patient self management. To support this it sets out a framework for survivorship in five different steps and details of the actions needed:   Information and support from the point of diagnosis – may be identified by holistic assessment Promoting recovery – early holistic assessment and care planning can identify needs and develop care plan Sustaining recovery – holistic assessment can help to maintain and support survivorship and encourage self management Managing the consequences of treatment – Holistic assessment can identify early signs of consequences of treatment Supporting people with active and advanced disease. – Holistic assessment can identify early signs of symptoms of recurrence

The NCSI defined four priorities Recovery package Physical activity Consequences of treatment Redesigning follow-up Information and support from the point of diagnosis   Key messages: Offer support from the point of diagnosis. Patient experience is improving, but there are gaps in services that need addressing. Clinical Nurse Specialists can play a key role in improving patient experience. The decisions taken about treatment options may impact upon quality of life long after treatment has finished: offer patients support in making the decisions that best reflect their individual priorities. Early cancer rehabilitation is important: it can prevent avoidable ill health and is more effective when provided early to avoid conditions becoming more complex and costly to treat later on. Offer patients support in considering work and education options from a very early stage; offer patients with complex work support needs onward referral to specialist vocational rehabilitation services. Using Patient Reported Outcome Measures (PROMs) to collect patient symptoms, concerns and quality of life routinely from diagnosis onwards, will help focus on what really matters to patients

The recovery package consists of 4 key elements: Holistic Needs Assessment Treatment Summary to patient AND a GP / Cancer Care Review by GPs An education event such as Health and Wellbeing event that includes physical activity and lifestyle information

Recovery package video – must have internet access – 6.24 mins http://youtu.be/tBDo3XJG378

The Recovery Package Holistic Needs Assessment and Care Planning Information for the patient about the process Assessment and care planning pack which contains the concerns check list and a care plan template in triplicate, one copy for the patient, one for the clinical records and one for the GP or to retain for audit. The Macmillan Organiser contains the same concerns check list for patients to use and also other assessment tools such as mood and food diaries.

completed (1 July 2013 – 27 June 2014) to date by September 2014 completed (1 July 2013 – 27 June 2014) Use of a tablet PC means patients can complete the assessment process themselves, saving time for the clinician. Responses from assessments instantly pre-populate the care plan and prioritise concerns. Data identifies trends about the needs of people affected by cancer and gaps in service provision. completed (1 July 2013 – 27 June 2014)

Top Outcomes resulting from the Care Plan By the Clinician Concerns discussed and advice given Information given Medication reviewed Short term follow up by a clinical nurse specialist By the Patient Advised to contact welfare or benefits advisor Advised to see GP Signposted to Financial Advice Service Support group information given

Worry, fear or anxiety (breast, ovarian, head & neck, endometrial, melanoma) Tired/exhausted or fatigued (breast, kidney, non-hodgkin’s lymphoma, ovarian, head & neck) Sleep problems/nightmares (breast, head & neck, lung, melanoma, ovarian Pain (breast, ovarian, head & neck, kidney, melanoma Eating or appetite (head & neck, kidney, ovarian, breast, lung)

Treatment Summary GPs identified that they do not receive a succinct summary related to cancer patients. The information they currently receive is either too much, not understandable to the GP or too little. The NCSI worked with a group of GPs to identify what information they needed and to develop this into a format that gave the key information. This was tested during the last 3 years at NHS Improvement test sites. The template was refined during the testing phase. The Treatment Summary has been developed to give a summary of information from secondary care to the GP. The patient should be offered a printed copy. During testing 90% of GPs found the Treatment Summary helpful – informs Cancer Care Review and future management of the patient Secondary care found it helpful to have a summary in the patients record – admissions to A&E – Informing MDT Patients found it helpful to have a record of care – travel insurance or visit to GP or hospital Format for the treatment summary and user guide on the NCSI and NHS Improvement website. Useful also for Hospice or Nursing home use. Informs GP data base and Cancer Care Review. NB Treatment Summary it is now available electronically on the two main cancer information systems Somerset Cancer Register and InfoFlex Cancer Information Management System, see NCSI website for further information.

Cancer Care Review Post-treatment with GP - assessment and care planning Financial impact of cancer Patient awareness of prescription exemptions Possible late effects of cancer and treatment Information needs in primary care GPs carry out 3 to 6 months following diagnosis of cancer – QoF points Developed an electronic template – similar to those used in chronic disease Good feed back from GPs - found it useful to have a structure to guide discussion. Also gave sources of information post-treatment with GP - assessment and care planning financial impact of cancer patient awareness of prescription exemptions possible late effects of cancer and treatment Information needs in primary care

Health and Wellbeing events The vision for the event is that everyone who has had a cancer diagnosis and is living with cancer will have access to information and education, providing comprehensive and holistic support to enable them to lead as normal a life as possible. The event will be a one off event/initiative and will act as a stepping off point for other forms of after care. It will enable the patient and their carers to manage the transition between the treatment phase of their care and survivorship. Key to the success of these events is the involvement of volunteers, providing services such as coordination of the event, buddying, information and support, financial advice. It provides the opportunity to : inform and educate patients about the holistic aspects and ongoing management of their disease. Make them aware of the local facilities, supportive care and opportunities that are available to them and their families. The tested models showed that a mixed environment providing presentations as well as a market place was the most popular and informative style.

Types of Health and Wellbeing Clinics? Generic Tumour specific/area specific Part of Stratification of the Pathway

How can a Health and Wellbeing Clinic benefit PLWC and their families? Evidence from pilots in 2010-2011 has shown that patients who attended a Health and Wellbeing Clinic event had: Better knowledge of the signs and symptoms of cancer recurrence and consequences of treatment. More confidence to question or challenge information and make informed decisions about their health. For some patients the clinics will be useful during treatment, for others they can be an alternative to outpatient appointments after active treatment is over. Evidence from pilots in 2010-2011 has shown that patients who attended a Health and Wellbeing Clinic event had: Better knowledge of the signs and symptoms of cancer recurrence and consequences of treatment. More confidence to question or challenge information and make informed decisions about their health. More confidence to deal with the physical discomfort and emotional distress associated with cancer and its treatment from interfering with their everyday life. A strong sense of reassurance- even if they don’t need services at that time, they know what’s available and how to access it in the future.

Benefits to patients and their families continued More confidence to deal with the physical discomfort and emotional distress associated with cancer and its treatment from interfering with their everyday life. A strong sense of reassurance- even if they don’t need services at that time, they know what’s available and how to access it in the future.

How can a HWBC benefit my practice and organisation? Help provide better patient outcomes, reduce unplanned admissions helping meet quality agenda by: Providing an effective atmosphere for delivering health and wellbeing messages in an informal and relaxed setting. Empowering patients by providing knowledge and boosting confidence, leading to earlier intervention and improved outcomes. Ensuring that people know what might happen next, and how to access the appropriate service if needed ensuring healthcare resources used effectively. Giving people direct referrals where necessary, i.e easier for them to access relevant services Sharing techniques to help self management for health and well being, thus improving their quality of life and potentially lessening their need for services. Ensuring that people understand the importance of remote surveillance, so that people continue to attend for their necessary tests Improving access to a wide range of services, helping address needs and improve outcomes Creating the opportunity to meet other people with similar experiences, providing reassurance, reducing anxiety and the sense of isolation, for both people living with cancer and their carers and families Volunteers adding value, including greeting attendees and supporting the events.

Having discussions about work and financial concerns early on in someone’s cancer journey can be vital in preventing problems You don’t have to be an expert to start a conversation about work and finance, and it doesn't have to be time consuming Macmillan has developed a range of online and offline resources to support you to have conversations and direct patients to information on work and finance and relevant services www.macmillan.org.uk/workandprofessionals www.macmillan.org.uk/financialsupport

The NCSI defined four priorities Recovery package Physical activity Consequences of treatment Redesigning follow-up Information and support from the point of diagnosis   Key messages: Offer support from the point of diagnosis. Patient experience is improving, but there are gaps in services that need addressing. Clinical Nurse Specialists can play a key role in improving patient experience. The decisions taken about treatment options may impact upon quality of life long after treatment has finished: offer patients support in making the decisions that best reflect their individual priorities. Early cancer rehabilitation is important: it can prevent avoidable ill health and is more effective when provided early to avoid conditions becoming more complex and costly to treat later on. Offer patients support in considering work and education options from a very early stage; offer patients with complex work support needs onward referral to specialist vocational rehabilitation services. Using Patient Reported Outcome Measures (PROMs) to collect patient symptoms, concerns and quality of life routinely from diagnosis onwards, will help focus on what really matters to patients

Physical Activity improves health and wellbeing outcomes Speaking notes: There is evidence to demonstrate that being physically active can help manage or prevent the following consequences of treatment: Cardiorespiratory function Muscular strength and endurance Bone health, including osteoporosis Flexibility Lympheodema Body weight and composition Quality of life, including depression, stress and anxiety Cancer related fatigue Reference: The importance of physical activity for people living with and beyond cancer (2011) Macmillan Cancer Support Physical activity is also an independent risk factor for over 20 other long term conditions such as coronary heart disease and type 2 diabetes. People active at recommended levels have a: 20% to 35% lower risk of CVD, CHD and stroke 30-40% lower risk of type 2 diabetes in at least moderately active people compared with those who are sedentary. 20-30% lower risk for depression and dementia for adults participating in regular physical activity. There is emerging evidence that being active at recommended levels may help reduce the relative risk of recurrence for breast, colorectal cancers. And may also help reduce the relative risk of disease progression / disease specific mortality for breast, prostate, colorectal and lung cancers. Macmillan Cancer Support (2011). The importance of physical activity for people living with and beyond cancer.

Tools and resources Key messages: Rest is not best Available: Evidence reviews How to guide, Macmillan Partnership Application template for physical activity Standard Evaluation Framework Key messages: Rest is not best Helps with treatment effects Reduces mortality and recurrence Cost benefits Reduces the risk of co-morbidities Our work: Published Evidence Review Conducted insight research Awareness campaign ‘Move More’ Implementing the DH physical activity pathway in cancer settings Supported cancer physical activity projects Developed specialist cancer qualification for physical activity professionals Funded ‘Walking for Health’

The NCSI defined four priorities Recovery package Physical activity Consequences of treatment Redesigning follow-up Information and support from the point of diagnosis   Key messages: Offer support from the point of diagnosis. Patient experience is improving, but there are gaps in services that need addressing. Clinical Nurse Specialists can play a key role in improving patient experience. The decisions taken about treatment options may impact upon quality of life long after treatment has finished: offer patients support in making the decisions that best reflect their individual priorities. Early cancer rehabilitation is important: it can prevent avoidable ill health and is more effective when provided early to avoid conditions becoming more complex and costly to treat later on. Offer patients support in considering work and education options from a very early stage; offer patients with complex work support needs onward referral to specialist vocational rehabilitation services. Using Patient Reported Outcome Measures (PROMs) to collect patient symptoms, concerns and quality of life routinely from diagnosis onwards, will help focus on what really matters to patients

Around 350k are having sexual difficulties The DH PROM survey of people affected by cancer in 2011 was the largest European survey of cancer survivors involving multiple cancer types, at defined time points to date. The survey was conducted by Quality Health in conjunction with three cancer registries in England. It covered cancer survivors with breast, colorectal and prostate cancer and non-Hodgkin’s lymphoma (NHL) at four different time points after diagnosis (c. one, two, three or five years). 1 year post diagnosis nearly half feared recurrence and almost a third were afraid of dying. 38% of prostate cancer survivors reported urinary leakage and 58% reported impotence. 1 in 5 colorectal survivors had difficulty in bowel control. QOL is closely associated with disease status and presence of other long term conditions. Almost a third reported doing no physical activity and around a fifth did the weekly recommended CMO physical activity i.e. 30 mins x 5. Increased physical activity associated with better QOL. At least 500k people in the UK are facing poor health or disability after treatment for cancer At least 350k people living with and beyond cancer are experiencing chronic fatigue Around 350k are having sexual difficulties Around 240k are living with mental health problems which can include moderate to severe anxiety At least 200k are living with moderate to severe pain after curative treatment Around 150k are affected by urinary problems such as incontinence Hundreds of people: Severe, complex late effects e.g. brachial plexopathy (nerve damage) from obsolete breast radiotherapy technique in 1980s, for which specialist services are needed Tens of thousands: e.g. An estimated 50% of the 17,000 per year receiving pelvic radiotherapy have bowel problems which affect quality of life and many of these will need support, advice or referral for specialist help. Many people also have chronic urinary and sexual problems after pelvic radiotherapy. Hundreds of thousands - e.g. people living after breast & prostate cancer treatment need advice/support for self-management and attention/monitoring in primary care for increased risk of cardiovascular disease and osteoporosis. Other long term risks which are elevated due to cancer treatment (depending on cancer type and treatment type) include second primary cancers, diabetes and dementia.

Endorsements UKONS The Society and College of Radiographers “NFGON are to be commended for their effort and enterprise in undertaking such a key piece of work addressing an issue which receives little concerted attention elsewhere.” UKONS

The NCSI defined four priorities Recovery package Physical activity Consequences of treatment Redesigning follow-up Information and support from the point of diagnosis   Key messages: Offer support from the point of diagnosis. Patient experience is improving, but there are gaps in services that need addressing. Clinical Nurse Specialists can play a key role in improving patient experience. The decisions taken about treatment options may impact upon quality of life long after treatment has finished: offer patients support in making the decisions that best reflect their individual priorities. Early cancer rehabilitation is important: it can prevent avoidable ill health and is more effective when provided early to avoid conditions becoming more complex and costly to treat later on. Offer patients support in considering work and education options from a very early stage; offer patients with complex work support needs onward referral to specialist vocational rehabilitation services. Using Patient Reported Outcome Measures (PROMs) to collect patient symptoms, concerns and quality of life routinely from diagnosis onwards, will help focus on what really matters to patients

Redesigning Follow-Up Breast 80% patients Colorectal 50% patients Testicular 95% patients Project management Clinician engagement Patient support Remote Surveillance Tested a new model of care over the past 3 years looking at how we can help people to cope with a diagnosis of cancer and we can individualise care to suit people’s needs – not one size fits all. This model means that some will be offered the opportunity to self manage with open access to care when required, the ability to make their own appointments if and when they need. Planned co-ordinated care which may include nurse led services and remote monitoring. Complex care for those who need close monitoring and regular appointments.

Resources

Triplicate pad and eHNA Treatment summary and cancer care review screenshot Health & Wellbeing events booklets Top Tips Guide Find out more www.ncsi.org.uk www.macmillan.org.uk www.be.macmillan.org.uk www.improvement.nhs.uk eHNA@macmillan.org.uk

Provides confidential, impartial information by phone & email. Q e Quality-assured cancer information, in 2013 reached over 4.7 million with booklets, leaflets and 3,000 pages online. Provides confidential, impartial information by phone & email. In 2013 responded to over 146,000 queries and accessed over £47.7 million of benefits and financial packages. Awarded Contact Centre Association Global Standard. 0808 808 0000 Visits local communities with Pods and Information Units. In 2013 they reached 60,851 people, promoting cancer awareness & local services. Direct Services is an exciting and innovative directorate that is at the heart of delivering support to people affected by cancer.   The Directorate provides practical, emotional and clinical support through a range of services these include: The Macmillan Support Line (MSL). This includes the Cancer Information and Support team, who act as the first point of contact for customer enquiries. They work together with the Welfare Rights Team, Financial Guidance Team and the Cancer Information Nurses to provide confidential, impartial information to Macmillan customers by phone and e-mail. In 2013, MSL responded to over 146,000 queries. In 2013, the Welfare Rights Team also helped people affected by cancer access over £44 million of benefits. In addition The Financial Guidance Service helped release £3.7m for people affected by cancer from their pensions funds: critical illness cover and other financial support packages. The Directorate also provides information and advice through the Mobile Information Service. The team comprises of four mobile information units and two information pods that visit local communities, workplaces and events throughout England. Our specialists also provide talks, workshops and presentations, promoting cancer awareness and help people to access local services. In 2013 the service reached 60,851 people affected by cancer across 526 locations. MSL and the Mobile Information and Support Service were awarded the Contact Centre Association (CCA) Global Standard Award in December 2013. The Macmillan Grants team gives financial support through one-off payments for adults, young people or children with cancer, to cover a wide range of practical needs. This can include things such as heating bills, extra clothing, or a much needed break. The grants team also help people access funds and grants from other charities too, such as Tom’s Gift. Macmillan grants helped 32,656 people last year. The Cancer Information Development team develop high quality cancer information for cancer patients, their families and carers. There are around 500 booklets, leaflets and factsheets comprising approximately 3000 pages online. Information is also available in translation, audio, Easy Read and BSL. In 2013 they reached over 4.7 million in the UK and 7.7 million worldwide. The most popular resource is ‘Help with the cost of cancer’ with an average of 7970 copies being sent out each month. In 2013 32,500 people received Grants of over £9.5 million for a wide range of items and services, like extra heating and clothing.

Email addresses and web links