Where clinical guidance exists that covers the follow-up care of cancer patients, such as the recent NICE guidance on the diagnosis and treatment of early and locally advanced breast cancer,101
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NHS Improvement, Transforming care for cancer inpatients: spreading the winning principles and
good practice, 2009
this must be adhered to. There is no evidence that traditional follow-up of regular appointments in secondary or tertiary care always
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National Chemotherapy Advisory Group, Chemotherapy Services in England: Ensuring quality and
safety, 2009 101
provides the most effective care. There is broad consensus that some of the follow- up carried out by London’s cancer clinicians is unnecessary. Most cancer
recurrences are picked up as a result of referrals between planned appointments. There is low awareness and poor understanding of the consequences of cancer and cancer treatment amongst both patients and some non-specialist clinicians. These issues lead to a considerable number of avoidable NHS visits with associated costs and poorer quality of care for patients.
In addition, people are now living longer with their cancer, more people survive cancer, and more people live with ‘chronic cancer’. These factors mean that more people are now also experiencing long-term side effects of cancer treatment. To address these issues, traditional follow-up services should be reviewed to ensure that they are evidence-based and, where necessary or desirable, replaced with bespoke aftercare services based on the emerging vision of the National Cancer Survivorship Initiative (NCSI).102
The NCSI has identified the need for five shifts in the approach to care and support for people living with and beyond cancer:
1. a cultural shift to a greater focus on recovery, health and wellbeing after cancer treatment
2. a shift towards assessment, information provision and personalised care planning, away from a one size fits all approach
3. a shift towards support for self-management, away from a clinically led approach 4. a shift from a single model of clinical follow-up to tailored support that enables
early recognition of and preparation for the consequences of treatment and signs and symptoms of further disease
5. a shift from an emphasis on measuring clinical activity to a new emphasis on measuring experience and outcomes through routine use of patient reported outcome measures (PROMs).
A cultural shift is needed in the approach to care and support for people affected by cancer. Aftercare with a greater focus on recovery, health and wellbeing after cancer treatment would replace the single model of clinical follow-up, where appropriate. Aftercare links specialist, primary care, palliative care, rehabilitation and support services (including social care and third sector providers) with a dedicated case manager or ‘supporter’. These services should work within the framework for supported self-management centred on individual care plans that have been developed together with the patient. This would lead to the provision of tailored support, enabling early recognition of and preparation for consequences of treatment and early recognition of signs and symptoms of further disease.
The cancer survivorship vision recommends that cancer patients should be assessed following initial treatment and then be assigned a level of risk of
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Department of Health, Macmillan Cancer Support & NHS Improvement, The National Cancer
developing consequences of treatment or further disease. An individual care plan would then be drawn up addressing the whole range of needs an individual might have after treatment with the aim of minimising risks and supporting the patient to manage ongoing conditions.
Figure 10 outlines the proportion of patients that would fall into three broad levels of need as estimated in by the NCSI. Commissioners must be aware that, while the majority of survivors should be supported to self-manage, others would continue to require varying levels of secondary care input and there may be unmet need for the type intensive follow-up required at level 3.
Figure 10: Survivorship levels of need
Level of need Estimated number of
patients involved (percentages will vary according to cancer) Level 1 – supported self-care with quick access back
into the system if and when needed to improve early detection and management.
ca. 70%
Level 2 – level of requirement requiring low levels of
secondary and/or primary care input after specialist assessment, diagnosis and care planning.
ca. 25%
Level 3 – highly complex consequences of treatment
requiring case management by an assigned keyworker (often a clinical nurse specialist) with multidisciplinary support.
ca. 5%
Patients should be given the appropriate information to make an informed choice on their preferred method of follow-up. Some patients are likely, initially at least, to prefer regular follow-up in secondary care to supported self-management. This option should be discussed with patients and their choice respected. A seamless transition to end of life care should be made when necessary.
It is imperative that any change in follow-up does not impair the capture of outcome data to maintain first class services. Patient reported outcome measures (PROMs) should be used routinely to measure the experience and outcomes of aftercare services by cancer survivors.
Personalised care plans should address psychological, rehabilitation, and
information needs, including what signs of recurrent or progressive disease to look for and what to do if they occur. They should also include support for getting back to work, identification and management of short, medium and long-term consequences of cancer treatment, and rapid re-entry to specialist services.
Where there is evidence that follow-up screening (such as
this should be undertaken in primary care where possible. Provider networks should ensure that protocols and pathways are in place for rapid access to secondary care from settings of screening follow-up.
Evidence of outcomes: increasing value for money by proving follow-up in the community
Prostate patients in south west London have historically been followed-up in secondary care. The pilot of a new pathway sees some patients being followed-up in GP surgeries with external supervision from specialist consultant urological surgeons and oncologists.
Clear protocols have been developed describing the pathway to ensure that patients are seen in the appropriate setting.
To ensure prompt consultant support and leadership the PCT pays one consultant session to staff what is effectively a Prostate Cancer Hotline. This allows GPs to ask for specialist advice without sending the patient to hospital with the inherent delays and costs to the patient and the NHS.
Current estimates are that the partially implemented scheme saves the PCT around £100,000 a year.
The survivorship model is dependent on improved education and support for patients, carers and healthcare professionals to promote supported self-
management and personalised care planning. Patient information should be made available in appropriate formats. This model should improve patients’ quality of life and experience of cancer care. Data collection and information exchange systems need to be in place to enable measurement of patient experience and outcomes. Implementing this model would require initial investment, but savings would be seen in the longer term through a reduction of unnecessary follow-up in secondary care. This reduction would free up consultant time, which can be used to reduce waiting times for new referrals.
Providing follow-up and survivorship services for rarer cancers needs to be balanced to ensure both sufficient patient volume for clinical expertise and local access for patient experience are provided. New follow-up systems should be monitored and assessed to ensure they improve outcomes and quality of life for patients.
The National Cancer Survivorship Initiative is undertaking further work to improve care for people living with and beyond cancer. The vision document was published early in 2010. This represents only the starting point of this work and commissioners and provider networks should monitor further outputs from the National Cancer Survivorship Initiative to identify how to turn the vision into reality.
Key recommendations:
Follow-up services should be reviewed to ensure that they are evidence-based and, where necessary or desirable, they should be replaced with bespoke aftercare services based on the emerging survivorship model.
Patients should be given the appropriate information to make an informed choice on their preferred method of follow-up.
A patient’s level of risk should be assessed following initial treatment. An individual care plan should then be drawn up addressing the patient’s whole range of needs. Patient information should be made available in appropriate formats to promote supported self-management.
New follow-up systems should be monitored and assessed to ensure they improve the quality of life for patients while maintaining good outcomes.