Dr Nicola Harker (pictured) and Shelagh Thompson show how a collaborative cancer rehabilitation service can improve care for people with cancer and reduce the burden on emergency services and primary care
Read this article to learn more about:
- the costs of care for people living with and beyond cancer
- why some patients' follow-up needs are not currently being met
- a local initiative to enhance recovery and wellbeing after cancer treatment.
There are currently around 2.5 million people in the UK living with or recovering from cancer.1 It is estimated that by 2030 there will be over 4 million cancer survivors in the UK,1 which for a GP practice of 10,000 patients means approximately 600 patients per practice (based on population projections).2,3 In the UK, most of these survivors will be aged 65 years and older (see Figure 1, below, for data to 2010).1,4,5
Patient needs and care costs
While cancer outcomes and experiences vary widely, UK research has shown that people who have had cancer treatment will consult their GP more often with concerns about medium- and long-term effects of their cancer treatment, as well as anxieties about recurrence (in one UK study, prostate cancer survivors consistently consulted up to three more times per year than controls).6 Nuffield Trust research showed that 15 months after diagnosis, people with cancer had 50% more GP visits (and 60% more Accident and Emergency attendances and 97% more emergency admissions) compared with a population of the same age and gender.7 It is also recognised that traditional models for follow up are not working well for a sizeable percentage of patients: in a study in England in 2005, 30% of people with cancer reported five or more unmet needs after treatment8 and in 2012, 41% of cancer patients said that they were not given enough support from healthcare and social services after leaving hospital.9
Achieving world-class cancer outcomes, a strategy for England 2015–2020 stresses the importance of supporting people with cancer to return to as good a quality of life as possible after active treatment. It states:10
'People require holistic support from diagnosis onwards, encompassing their physical, financial, psychosocial, and information and support needs, throughout their entire cancer journey. Care should be built around what matters to the person, and individuals should feel prepared for the life consequences of their cancer and its treatment, equipped to manage their care and with control over their life as a whole.'
If cancer patients are grouped depending on their cancer outcomes as opposed to diagnosis, the costs of their care are as illustrated in Figure 2 Below.11
As this figure shows, patients with pre-existing morbidities, and people living with and beyond cancer, incur significant costs for the NHS, with the treatment phase in some cases costing less than half of the overall cost. This highlights again that patients' needs are far wider than just their active cancer treatment.
These findings suggest that overstretched hospital teams and general practices need to consider new models for providing care for survivors of cancer.
National Cancer Survivorship Initiative
The National Cancer Survivorship Initiative is a partnership between NHS England and Macmillan Cancer Support. Over recent years it has researched best practice, piloted ideas, and developed recommendations, which now form the Living With and Beyond Cancer Programme.12 The key recommendation is to ensure that all cancer patients have access to a 'Recovery Package' (see Figure 3, below), comprising:13
- holistic needs assessment and care planning
- treatment summary at the end of each acute treatment phase
- cancer care review
- a patient education and support event.
Holistic Needs Assessment
The Holistic Needs Assessment (HNA)14 is a structured, guided questionnaire to assess patients for ongoing symptoms or difficulties following treatment.
It is often conducted by the Cancer Nurse Specialist at the final outpatient appointment, or at a 'patient education and support' event (see below). As well as addressing immediate needs, this questionnaire could be used to risk-stratify patients as they come to the end of their treatment, to provide individuals with the most appropriate pathway for ongoing care or monitoring.
The Treatment Summary15,16 is a template developed jointly by GPs and consultants, to ensure that key information about treatment, treatment effects, signs of recurrence, and any specific follow up or concerns, are communicated clearly to the GP practice and to the patient (if they wish).
Cancer Care Review
The Cancer Care Review is a primary care review of symptoms and concerns with signposting to relevant support.17 In some areas, practice nurses are receiving training to carry out these reviews as part of co-morbidity chronic disease management clinics in primary care.
Patient Education and Support Event
The Patient Education and Support Event—sometimes called a 'moving on day' or 'Health and Wellbeing Event'—is usually the last appointment with the hospital. It is a group event where patients recovering from the same cancer are brought together in small groups to learn about self-care, locally available support, exercise and diet, signs and symptoms of recurrence, and includes opportunities to build support networks and ask questions. It can be helpful to commission self-management courses for patients, and also to improve clinician communication skills around self-management.
There is increasing evidence for the role of exercise in improving cancer outcomes, so some of these events incorporate exercise information, or there may be a separate exercise programme developed locally for cancer survivors.
Commissioning for recovery is particularly challenging for cancer, because of the complexity of the commissioning landscape. Cancer care is fragmented across multiple commissioning bodies, including specialist commissioning, CCGs, local authorities, public health, and social care.
Currently no one 'owns' oversight of the whole pathway, and that raises a particular challenge. In addition, the current levers and incentives (such as government targets) tend to favour the treatment stage, with a lack of accountability for the social, psychological, and emotional aspects of cancer care.
The cancer Strategy for England 2015–202010 suggests that services to support living with and beyond cancer, including end-of-life care, should be commissioned by CCGs with support from health and wellbeing boards. The author proposes that collaborative commissioning discussions are essential, and some CCGs have already put in place governance arrangements with local stakeholders that support this approach.
What are the consequences of not following a collaborative commissioning approach?
Most CCGs do not have the funding to tackle the Recovery Package alone. The implications of not providing the right planned services for this expanding group of patients are that there will be increasing pressures on general practice and accident and emergency departments, and inefficient follow-up processes that waste resources on routine recalls while failing to support people in particular need. Most importantly, patients will continue to feel unsupported and have a poor experience of care.
What are the benefits of a collaborative approach?
As well as improving outcomes for individual patients, implementing the Recovery Package aligns well with commissioner's priorities under, for example:
- NHS Outcomes Framework/CCG Outcomes Indicator Set:18,19
- Domain 2: Enhancing quality of life for people with long-term conditions—ensuring people feel supported to manage their condition
- Domain 4: Ensuring that people have a positive experience of care—improving the experience of care for people at the end of their lives
- Quality Premium (financial incentives for CCGs):20
- urgent and emergency care—avoidable emergency admissions.
The Recovery Package also aligns very well with the House of Care model,21 which is a suggested coordinated service delivery model for people with long-term conditions. Commissioners are looking at this model both nationally and locally, and there is clear alignment between the two.
Berkshire Cancer Rehabilitation Service
The Berkshire Cancer Rehabilitation Service was established to provide a holistic step-by-step approach to living with and beyond cancer, preparing patients and their carers with a range of tools and opportunities to enhance recovery and patients' ability to get back to everyday life after cancer treatment. Services offered include:
- physical activity—structured, nurse-led and maintenance classes have been established across Berkshire, along with one-to-one advice and signposting to many other activities to aid recovery from the negative effects of cancer
- complex case management—face-to-face contact in their own home for people with complex needs, and a telephone support service for the more able
- self-management and educational programmes—to empower patients to take control of their illness
- psychological support—from either clinical psychologists or Relate22 make a significant difference to how patients and their families cope with the diagnosis
- social support—sharing experiences with others who have been through something similar can be positive, uplifting and increase a person's network of support
- carer support—a cancer diagnosis has an impact on loved ones too, so in conjunction with a local carer’s charity, counselling sessions are provided for carers at coffee mornings to give opportunities to share experiences.
The Berkshire Cancer Rehabilitation Service links very closely with the local Macmillan volunteering service, whose volunteers befriend patients needing extra support and provide work-mentoring for those seeking new work opportunities. A multidisciplinary survivorship meeting is held monthly to enable all members of the Cancer Rehabilitation Service to discuss and plan patient interventions, ensuring a holistic approach. Cancer can have a huge impact on family finances, so close links with the local Macmillan Citizens Advice Bureau23 service have been established.
The patient-centred HNA14 is the bedrock of the service and determines which of the services are appropriate for the patient; many unmet needs have been highlighted through its use. Most are psychological problems (such as anxiety), but the team has noted significant issues around sexual health and long-term physical effects of treatment (particularly bowel and urinary incontinence). The team has used this information to provide feedback to the appropriate site-specific teams.
Aims and outcomes of the service
The service aims to deliver the following outcomes for people affected by cancer:
- improved self-confidence, mental wellbeing, and patient satisfaction
- improved quality of life (e.g. reducing feelings of isolation, improving safety)
- self-care/management and personalised care and support (such as goal-setting and problem-solving)
- reduced negative consequences of treatment
- information about the benefits of physical activity and sustained improvements in physical activity.
Evaluation of the service is ongoing, but it is hoped that there will be wide-ranging positive outcomes, for example reductions in drug costs and numbers of:
- hospital admissions
- patients treated for anxiety and depression
- phone calls to Clinical Nurse Specialists
- consultant follow ups.
An interim evaluation has demonstrated highly significant (p <0.001) improvements in patients' perception of the general feelings of health.24
Completion of HNA's pre- and post-involvement with the service showed a reduction in concerns over time that was highly significant (p =0.006).24
Patient feedback has been very encouraging (see Box 1, below). One person identified numerous concerns on her initial HNA; at the end of the intervention, she said she still had concerns but knew how to manage them. Another has stated that she felt being involved in the service 'was like a magic wand being waved' over her.
Box 1: Positive patient feedback
'I cannot find enough words to say how much difference this course has made to myself both emotionally and mentally and how my new outlook on life going forward is in a more positive and empowered way.' [following self-management course]
'I feel I have the tools to move on.'
'I’ve never felt so good, I couldn’t have done it without the exercise.'
'I have been really happy with the service, I came to my first session feeling defensive—not wanting to participate at all. My fears were soon put to rest and I felt so much happier after one session. Thank you for listening.' [following sessions with Relate]
'Relate has been incredibly beneficial to my whole family. The course has helped me come to terms with the emotional aspect of cancer.'
'Most beneficial thing I’ve done, totally holistic, improved my general health and fitness, enjoyed the social aspect.' [exercise sessions]
'Would recommend the service to everyone.'
[Patients were asked to describe how they feel about the exercise session] 'energised; more confident in my ability; positive; love it; beneficial; invigorating; I feel good.'
A truly collaborative approach has ensured the success of the service. The many stakeholders include:
- seven CCGs
- two acute hospitals and one community trust
- six local authorities and their leisure centres
- Sport England
- County Sports Partnership
- local community centres
- Prostate Cancer UK
- Penny Brohn Cancer Care
- Macmillan Cancer Support
- University of Coventry (HOPE).
Using financial incentives
Financial incentive schemes (Commissioning for Quality and Innovation [CQUINs])25 are an important mechanism in the Recovery Package because they formalise targets and allow trusts to prioritise resources that ensure systems are put into place. We have seen good examples of CQUINs for the Recovery Package where a phased approach is used, for example:
- choosing the most achievable specialities (e.g. breast, prostate, and colorectal)
- setting a percentage threshold that increases through the quartiles (e.g. 25% of patients by end of quartile 2, 50% by quartile 3, and 75% by the end of quartile 4) to allow new systems to embed
- setting financial rewards for partial and full achievement of the targets.
Subsequent years' CQUINs can then expand the Recovery Package out to other specialities, using what has been learned from the first year.
The needs of cancer patients extend far beyond their active treatment; in order to give patients appropriate support to live with and beyond cancer, innovative ideas and collaboration with other providers is needed. This article demonstrates the possibilities, with examples that have already been tried in the UK with considerable success. In order to protect primary care from this expanding demand and also to meet the needs of cancer patients, the author proposes that commissioners should consider these options.
- The number of people in the UK living with or recovering from cancer is growing and a large proportion are aged 65 years or over
- Surveys indicate that under the current system, many patients with cancer are not receiving the support they need after leaving hospital:
- patients' needs are wider than just their active cancer treatment
- The treatment costs in cancer survivorship phases are in some cases higher than the cost of treatment for the cancer itself
- The cancer Strategy for England 2015–202010 supports holistic care for cancer patients from diagnosis onwards
- Commissioning for cancer care is currently fragmented and tends to focus on the treatment stage:
- the cancer Strategy for England 2015–202010 recommends that CCGs and health and wellbeing boards work to identify and promote best practice in supporting people living with and beyond cancer
- The National Cancer Survivorship Initiative has developed a 'Living With and Beyond Cancer Programme' to ensure that all people with cancer have access to a 'Recovery Package', the aims of which align well with commissioners' existing priorities
- Most CCGs do not have the funding to tackle the Recovery Package alone and so an innovative, collaborative approach is needed:
- financial incentives help to formalise targets and prioritise resources.
- Macmillan Cancer Support. Statistics fact sheet. Macmillan, 2015. Available at: www.macmillan.org.uk/Documents/AboutUs/Research/Keystats/StatisticsFactsheet.pdf
- Maddams J, Utley M, Møller H. Projections of cancer prevalence in the United Kingdom, 2010–2040. Br J Cancer 2012; 107 (7): 1195–1202.
- Office for National Statistics. National population projections. Table A1-1, Principal projection—UK summary, 2014-based. Of NS, October 2015.
- National Cancer Survivorship Initiative. Living with and beyond cancer: Taking action to improve outcomes. London: NCSI, 2013. Available at: www.gov.uk/government/uploads/system/uploads/attachment_data/file/181054/9333-TSO-2900664-NCSI_Report_FINAL.pdf
- Irvine L, Hounsome L. Understanding the burden and characteristics of older people living with and beyond cancer across the UK. Macmillan Cancer Support, National Cancer Intelligence Network, 2014. Available at: www.ncin.org.uk/view?rid=2699
- Khan N, Rose P, Watson E. Primary care consultation behaviours of long-term, adult survivors of cancer in the UK. Br J Gen Pract 2011; 61 (58 4): 197–199.
- Nuffield Trust. Evidence for better health care. Use of health and social care by people with cancer. Nuffield Trust, 2014. Available at: www.nuffieldtrust.org.uk/sites/files/nuffield/publication/140602_social_care_for_cancer_survivors_reserach_summary_final.pdf
- Armes J, Crowe M, Colbourne L et al. Patients' supportive care needs beyond the end of cancer treatment: A prospective, longitudinal survey. J Clin Oncol 2009; 27 (36): 6172–6179.
- Macmillan Cancer Support. Cancer patient experience survey: Insight report and league table 2012–13. Macmillan, 2013. Available at: www.macmillan.org.uk/Documents/AboutUs/Research/Keystats/2013CPESInsightBriefingFINAL.pdf
- The Independent Cancer Taskforce. Achieving world-class cancer outcomes: a strategy for England 2015–2020. NHS England, 2015. Available at: www.cancerresearchuk.org/sites/default/files/achieving_world-class_cancer_outcomes_-_a_strategy_for_england_2015-2020.pdf
- Macmillan Cancer Support. Throwing light on the consequences of cancer and its treatment. Macmillan Cancer Support, 2013. Available at: www.macmillan.org.uk/Documents/AboutUs/Research/Researchandevaluationreports/Throwinglightontheconsequencesofcanceranditstreatment.pdf
- National Cancer Survivorship Initiative website. NCSI legacy and Living With and Beyond Cancer Programme.www.ncsi.org.uk/news/new-living-with-and-beyond-cancer-programme (accessed 21 October 2015).
- Macmillan Cancer Support website. The Recovery Packagewww.macmillan.org.uk/recoverypackage (accessed 4 November 2015).
- Young N, Smith A, Smith L, Wilkinson A. Holistic needs and care planning. Macmillan Cancer Support, 2012. Available at: be.macmillan.org.uk/Downloads/CancerInformation/SGPwinter2012hna.pdf
- Macmillan Cancer Support website. Treatment summary: a tool to improve communication between cancer services and primary care.www.macmillan.org.uk/Aboutus/Healthandsocialcareprofessionals/Newsandupdates/MacVoice/Treatmentsummaryatooltoimprovecommunication.aspx (accessed 4 November 2015).
- National Cancer Survivorship Initiative. NSCI Treatment Summary user guide and template. NCSI, 2012. Available at: www.ncsi.org.uk/wp-content/uploads/Treatment-Summary-User-Guide2.pdf
- Campion-Smith C. Cancer care review—a patient who has completed primary treatment for cancer. InnovAIT 2011; 4 (3): 177–178.
- Department of Health. The NHS Outcomes Framework 2015/16. DoH, 2014. Available at: www.gov.uk/government/uploads/system/uploads/attachment_data/file/385749/NHS_Outcomes_Framework.pdf
- NHS England. CCG Outcomes Indicator Set 2015/16: at-a-glance guide. NHS England, 2015. Available at: www.england.nhs.uk/wp-content/uploads/2012/12/ccg-ois-2015-glance.pdf
- NHS England. Quality Premium: 2015/16 guidance for CCGs. NHS England, 2015. Available at: www.england.nhs.uk/wp-content/uploads/2015/04/qual-prem-guid-1516.pdf
- NHS England website. House of Carewww.england.nhs.uk/resources/resources-for-ccgs/out-frwrk/dom-2/house-of-care/ (accessed 20 October 2015).
- Relate website. www.relate.org.uk (accessed 21 October 2015).
- Citizens Advice website. Cancer support service. Supporting people affected by cancerwww.citizensadvice.org.uk/about-us/how-we-provide-advice/advice-partnerships/cancer-support-service/ (accessed 21 October 2015).
- Somerville M, Strawbridge R. Review of Macmillan Wellbeing Programme. Institute of Vocational Learning and Workforce Research in Health and Social Care, Bucks New University, February 2015.
- NHS England. Commissioning for quality and innovation. Guidance for 2015/16. NHS England, 2015. Available at: www.england.nhs.uk/wp-content/uploads/2015/03/9-cquin-guid-2015-16.pdfG