This report has presented an account of change in cancer services over the past two-and-a-half decades. Drawing on data and testimony from many of the people involved, it has explored the evolution of the national cancer strategies up to 2015, and highlighted aspects of their constituent policies, from screening to living with and beyond cancer.

One of the objectives for this report was to try to identify which elements of the national approach to improving cancer in England were successful and less successful, and suggest reasons as to why. We knew, before embarking on the report, that this endeavour would be imperfect from a research perspective. We were unable to find any comprehensive evaluations of the cancer strategies in the research literature. Earlier Health Foundation analysis of the evidence base underpinning strategies to improve quality in the NHS in England (A clear road ahead ) noted that progress on the cancer strategies, like the other nationally focused programmes on mental health or coronary heart disease, that date from the same period, was primarily assessed through official publications (from the Department of Health, or regulators such as the NAO or the Commission for Health Improvement) and by some of the disease-specific charities.

There is no counterfactual of what might have happened in the absence of the NHS Cancer Plan and its successors. The close tracking of England’s cancer policy by the devolved nations makes it difficult to use the natural experiment of the UK’s four nations in any meaningful way. Independent academic analyses of data on outcomes (1 and 5-year survival rates) have argued for progress (or lack of it) as evidence of the impact of the cancer strategies but are unable to shed light on the impact of the different components of the strategies themselves.

In drawing out learning in this discussion, we are primarily (and unavoidably) reliant on the seasoned judgement of those who were closely involved in managing, implementing and expanding the evidence base of the many components of the cancer strategies: the senior clinicians, managers, researchers from the NHS and voluntary sector.

A consistent theme that emerged from many of the interviews was the creation of a broad community for change through a national cancer strategy. It is possible to distinguish separate components of this, that in combination, were perceived as having created a sense of momentum, particularly among clinicians.

An evidence base, credible enough to command clinical support, that encompasses service guidance as well as clinical guidelines

The NHS Cancer Plan was built on firm foundations laid by the Calman–Hine report. A critically important component of these was the creation of service guidance, based on syntheses of the best available evidence. The strength of these enabled change to be pushed through, often in the face of clinical resistance. Calman–Hine implied changes in who clinicians worked with (ie the MDT) and what sort of work they should do (ie centralising some procedures, ceasing doing others).

Changes of this nature, which reach deep into the working practices of a large group of clinicians, some of whom had high levels of autonomy, attract challenge and resistance. But the testimony of those charged with rolling out the Calman–Hine recommendations suggests that this was offset by the clarity of the Improving Outcomes Guidance, and their scope. By going beyond clinical guidelines (which is generally applicable to individual practice) to encompass how services might be configured to maximise improvement, the guidance also provided a sense of direction for teams as well as individual clinicians.

Mechanisms/infrastructure to bring clinicians together across organisational boundaries, equipped with capability to improve

As important as the clarity of the guidance itself, was the vehicle for their implementation: the cancer networks. At their best, the combination of adequately funded cancer networks and the cancer collaboratives were able to mobilise a coalition-of-the-willing to pilot new ways of working, and share learning with peers. While some of this activity was aligned with a ‘managerial’ agenda (ie redesigning pathways to meet waiting time targets), much of the activity was not, and represented a mechanism to engage clinicians (and acknowledge success) ‘outside the management mainstream’ in Professor Bob Haward’s words. The networks, supported by the Cancer Services Collaborative, used improvement methodologies and were able to fund time for clinicians to meet and learn together across teams and organisational boundaries, and include patients. Between 2000 and 2013 they provided a stable forum for clinical focus on cancer while there was flux in other areas (for example the creation of PCTs and expansion of foundation trusts).

Although a period of central ‘grip’ was applied in the mid-2000s to speed up progress towards meeting a waiting times target, the more voluntary approach of the networks and collaboratives may well have laid the groundwork for a more aggressively managerial approach to work.

Visible leadership

The network development programme (which brought together networks several times a year) functioned as a mechanism to connect local leaders (including patient representatives) directly to the National Clinical Director, which enabled a two-way exchange of information, as well as a space for networks to share experience and learning with each other.

Regular feedback from the networks, whether positive or negative, was one strand of soft intelligence that fed into a central leadership team that had a comprehensive overview of the quality of care being delivered. Data from registries, audit, NHS trusts, screening and research all flowed into the National Cancer Action Team. This needed the infrastructure of a team behind it, but also a clinical leader with a mandate to act on it, and engage with the full range of stakeholders in an inevitably complex landscape of professional bodies, charities, and the research and academic community. Communicating the rationale for change so that it can be related back to those delivering services was vital, but also time-consuming, and required the capacity for the leadership to be physically present at as many professional fora as possible. Another important function was the ability of this team to face inwards, and understand the development of other system-level policies, and their potential interaction with the cancer strategy. This also served the purpose of keeping cancer in the minds of the senior NHS leadership, and ministers. The central team also acted as radar for future developments in research and technology.

A clear and powerful patient voice

In the case of cancer, the big charities acted as a powerful vehicle for patients’ perspectives, that fed into the development of strategies, shaped research and became increasingly savvy with the media. Cancer has some unusually large charities, (Cancer Research UK and Macmillan Cancer Support) but some of the smaller charities, for instance for teenage cancers, were often able to punch above their weight. The national cancer strategies also opened up spaces for patients to be heard outside the charities. Patients were increasingly incorporated into cancer networks and peer review, and their presence in these was increasingly welcomed by professionals.

Data was the golden thread through all of this

Even though cancer data were already rich compared with other disease areas in the late-1990s, it has developed markedly since then, both in scope and the capacity to be linked to get a picture of what happens to patients across different organisations. It has taken time and there are still gaps. Patient experience of services is captured well; their quality of life after treatment is still not reported on a national basis. Nevertheless, an increasing amount of data on outcomes and processes of care that flowed into the central team from the early 2000s enabled oversight of progress on implementation, and was able to support both research and improvement locally.

5-1 Learning for future national improvement programmes?

Previous Health Foundation analysis has summarised (and contributed to) research on what needs to be in place to improve quality, applicable to two very distinct levels of the health system. The attributes of national, overarching quality strategies have been described and appraised (A clear road ahead, Constructive comfort), while there is an extensive and vibrant literature on what needs to be in place at an organisational, network or team level, to improve quality and spread good practice (some of it also summarised by the Health Foundation)., This leaves a gap where national programmes such as the cancer strategy are concerned: should they be thought of as scaled-down national strategies, or scaled-up improvement approaches?

5-2 The cancer strategy as a ‘vertical’ improvement programme

One approach might be to think of national condition or disease-specific improvement programmes as ‘vertical’ versions of a national quality strategy, that is, they should aim to have the same coherence and scope. In previous work, we have analysed the quality strategies for the NHS in England as a whole against examples of frameworks designed to shape comprehensive approaches to quality. In A clear road ahead, we used the Juran trilogy and the NHS Quality Framework, adapted from the 2008 High Quality Care for All.

Figure 33: The Juran Trilogy

The Juran Trilogy suggests the need for a balance between planning (to set direction), improvement (through meaningful support to professionals and organisations) and the appropriate use of control mechanisms. Applying the insights from the analysis of the cancer plans set out in this report, the national cancer plans, central team, networks and data, enabled improvement and planning to take place between 2000 and 2015. But control was perhaps a weaker element, given the reliance on central grip for waiting time compliance, limited regulation once peer review had subsided, and the difficulties of establishing commissioning as a lever to improve cancer outcomes at local level. The National Cancer Action Team also lacked the metrics for monitoring or performance-managing outcomes, or even proxies for outcomes (eg stage).

Another conceptual approach is to apply the NHS Quality Framework (set out below), a framework that describes the functional capabilities needed to enable quality to improve at a national level.

NHS Quality Framework

  1. Set direction and priorities

    Setting clear quality priorities and an agenda for quality improvement and desired outcomes and performance data.

  2. Bring clarity to quality

    Setting standards for what high-quality care looks like across all specialties.

  3. Measure and publish quality

    Harnessing information to improve quality of care through performance and quality reporting systems that provide feedback to providers of care at systemic, institutional or individual levels, and information to users and commissioners of services for accountability and choice.

  4. Recognise and reward quality

    Recognising and rewarding improvement in the quality of care and service through financial and non-financial recognition (eg enhanced reputation or prestige).

  5. Safeguard quality

    Using regulation to improve health care, to guarantee minimum acceptable standards and to reassure the public about quality of care.

  6. Build capability

    Improving leadership, management, professional and institutional culture, skills and behaviours to provide quality assurance and improvement.

  7. Stay ahead

Developing research, innovation and planning to provide progressive, high-quality care.

If these functions are applied to our analysis of the national cancer strategies and implementation over this period, then many of the components were either in place, or developing between 2000 and 2015 (Table 11).

This assessment suggests that the National Cancer Programme succeeded in having activity in all seven functions of the quality framework, even if not evenly spread or perhaps running concurrently. Nevertheless, there are gaps, as many of our interviewees reflected. Some of these gaps relate to the limited reach of the efforts on cancer services, mainly directed at secondary and tertiary care, with action to include primary care beginning much later in the 2000s. The definition of ‘quality’ as encompassing ‘living with and beyond cancer’ has also taken much longer to develop and implement.

Table 11: Assessment of the NHS Cancer Plan/strategies against the NHS Quality Framework

Set direction and priorities

Articulated in NHS Cancer Plan and subsequent strategies.

Bring clarity to quality

Improving Outcomes Guidance fulfilled this for tumour groups; some areas still underdeveloped, such as living with and beyond cancer.

Measure and publish quality

Good data on many outcomes; stage data only recently available; more progress needed on quality of life; more data needed to be made available at clinical team level.

Recognise and reward quality

Networks and peer review provided a route for recognition; financial incentives remained underdeveloped/ineffective, for example to encourage trusts to invest in diagnostic capacity.

Safeguard quality

Peer review fulfilled this for a while; the official regulator did not look at the quality of cancer services specifically, and has only very recently started to focus on this.

Build capability

Cancer Services Collaborative, cancer networks, nationally funded training programmes.

Stay ahead

National Cancer Action Team, at full capacity, had the resources to horizon scan.

In A clear road ahead, our 2016 review of the NHS quality strategy for England as a whole, we suggested that the system had become over-reliant on ‘control’ or regulatory approaches to improving quality, particularly in the wake of the Francis Inquiry into the failings at Mid Staffordshire NHS Foundation Trust, a trend that may have since been exacerbated as the NHS as a whole has grappled with maintaining performance against waiting time targets in the context of constrained budgets. One of the lessons from this review of the cancer programme is – perhaps – that investing in the infrastructure for improvement – networks, collaboratives, data, a central team – may be more than just a luxury, if clinicians are to be mobilised to improve on a large scale.

5-3 Finishing the business: focus on early diagnosis?

At a much more simplistic level, it is possible to identify a set of ingredients that have to fall into place to improve the treatment for patients, whether in cancer, or any other conditions:

  1. Belief (at all levels of the system) that there is a problem that needs to be addressed.
  2. An understanding of what the drivers of that problem are.
  3. Data to accurately monitor the drivers and the outcomes of interest.
  4. Interventions to address the problem, with evaluation built in.
  5. The resources to supply the interventions, for example, workforce or capital investment.
  6. Support and encouragement for implementation (local capability and national support).
  7. Accountability for improvement.

One of the most striking observations made by those people involved with improving cancer, is how long it has taken to assemble the full list of ingredients. Looking back over the past 2 decades in relation to cancer in England, although national strategies since 1995 have repeatedly described the problem to be solved (poor cancer survival) (1), some of the subsequent ingredients listed have only very recently fallen into place. Take, for example, the problem of late diagnosis. By the late 1990s there was a belief among politicians, policymakers, patient groups and a critical mass of clinicians that outcomes for cancer were relatively poor compared with other countries, and that something needed to be done. But it took the best part of a decade to develop both belief (1) and an understanding (2) of how important a role late diagnosis was playing in England’s poor cancer outcomes, and insight into the factors that might be inhibiting patients from coming forward, and general practitioners from referring.

It is only in the past few years that data (3) have been collected systematically across the country on stage of cancer at diagnosis for each patient, a metric crucial to monitoring progress in the various interventions being tried, including earlier rapid diagnosis and expanded screening programmes. But although many of the factors are now in place for accelerating progress in early diagnosis, austerity and the disruption in the wake of the 2012 NHS reorganisation has disrupted other key components, for example, the capability and accountability for making change happen at local level. As we have described in this report, this is due to the dismantling of cancer networks, and fragmentation of many of the structures above them, between NHS England, Public Health England and other arm’s-length bodies. Although the wheels are now turning again in the form of cancer alliances and integrated care systems or sustainability and transformation partnerships, momentum was lost at national and local level and has had to be rebuilt.

Our report highlights the importance, above all, of the human infrastructure that needs to be in place to wield the soft power that is crucial to engage and motivate clinicians and managers across a complex service. Many of the ingredients listed require attention to be given to beliefs and behaviours, as well as alongside the evidence and skills to implement change. Without these, the injection of resources (5) may not be effective.

The remainder of this discussion presents a set of cancer-specific recommendations relating to the title of this report, Unfinished Business: An assessment of the national approach to improving cancer services in England 1995–2015. In October 2018, the Prime Minister announced that a new cancer strategy would form part of the NHS Long Term Plan. Drawing attention once more to the lagging survival rates for cancer in England compared with other countries, Theresa May set out an ambition to increase the proportion of patients diagnosed at early stage from one in two to three in four by 2028. This should help to eliminate the gap in survival rates between England/UK and other comparable countries. The Prime Minister spoke about reducing the age for starting bowel screening to 50 years and investing in scanners and rapid diagnostic centres.

This is the same ambition that was set nearly 20 years ago, and will be especially challenging, as the proportion of patients being diagnosed at early stage has remained almost static between 2015 and 2017.

Whole system change will be needed. We know that patients in the UK are uniquely worried about bothering their GP; GPs in the UK are much less likely to investigate or refer patients than those in comparable countries and hospitals are feeling swamped by current levels of referrals (and are failing to achieve the 62-day standard).


  1. Bowel screening: The change to Faecal Immunochemical Test (FIT) testing should lead to increased participation rates but this needs to be accelerated. Endoscopy capacity also needs to be increased considerably. This could be done by increasing the non-medical endoscopy workforce. Current endoscopy capacity could also be released by introducing FIT testing in primary care for patients with low-risk colorectal symptoms. This has recently been shown to be safe and effective in a paper from Denmark, published in the British Journal of Cancer. However, it will require a major shift in primary care practice. Lowering the age of first bowel screening to 50 (as per the Prime Minister’s conference commitment) will improve outcomes, but will require further expansion of capacity.
  2. Early detection of lung cancer : The recently announced results of the NELSON trial are very encouraging, showing a 26% reduction in lung cancer mortality among men at high risk of lung cancer who underwent serial low-dose CT scans. Importantly, the proportion of patients who were diagnosed with operable (early stage) disease increased to 67%. We need to ensure that the findings from these studies are translated to benefits for patients as soon as possible.
  3. NICE Guideline implementation: NICE Guideline 12 should be fully implemented. This guideline recommends that GPs should investigate patients who have symptoms which indicate a 3% or higher risk of cancer. However, these guidelines have not yet been fully implemented and efforts are being made to increase GP awareness. Some, but not all, CCGs have changed their referral templates to comply with the guidelines and tools are being developed to assist GPs in assessing levels of risk. Much more work will be needed to change GP practice (and raise public awareness about symptoms of possible cancer).
  4. Rapid diagnosis centres: The government should be ready to act quickly to spread learning from the Accelerate, Coordinate, Evaluate (ACE) Programme (run by Cancer Research UK), as evidence emerges of benefit to patients with non-specific symptoms. Although a primary aim would be to diagnose cancer earlier, these centres would also facilitate earlier diagnosis of other significant conditions. These could (and possibly should) be located outside acute hospitals for convenience for patients, and so that diagnostic facilities are not competing with those needed for emergency care pathways.
  5. 62-day standard: It will be important to continue to measure the timeliness of investigations and treatment within hospitals, though modifications of the 62-day standard should be considered as new pathways evolve.
  6. Diagnostic workforce and equipment: More patients will undoubtedly need to be investigated. This will require more CT, MRI and endoscopy facilities and an increase in the associated diagnostic workforce. Changes in skill mix need urgent consideration, as does exploring the potential of outsourced reporting (if  necessary to other countries) and artificial intelligence (AI).
  7. Prevention and personalised care: The push for earlier diagnosis should not be at the expense of investment in prevention (which will require reversing cuts to public health budgets as well as cross-government effort on the causes of obesity, smoking and excess alcohol consumption) or further progress in supporting cancer survivors after treatment. Success in early diagnosis will mean more people living after cancer: enabling their wellbeing and health is crucial.
  8. Funding and accountability: Decisions will be needed on where accountability lies for earlier diagnosis (and thus improved survival) as this will require concerted efforts from public health, primary and secondary care. Integrated care systems might be given responsibility for this, but whichever bodies are funded (whether cancer alliances, sustainability and transformation partnerships or integrated care systems) will need to produce credible plans and have progress transparently monitored.
  9. Monitoring: Key metrics will include:
    • uptake of screening (especially bowel) and outcomes
    • uptake of ‘case finding’ for lung cancer and outcomes
    • GP awareness and compliance with NICE Guideline 12
    • referrals to diagnostic centres and conversion rates
    • stage at diagnosis (by cancer site and age)
    • 1- and 5-year survival
    • emergency presentations
    • 2-week wait, and 62-day standard compliance (or modifications)
    • reduction in unwarranted variation of any of the above.
  10. Progress reports: Public Health England’s National Cancer Registration and Analysis Service (NCRAS) should be charged with producing regular (monthly or quarterly) reports on progress, both nationally and locally.
  11. Attitudinal change: Perhaps the greatest challenge will be making these changes work with the grain of the current NHS gatekeeping model. This will require: giving the public faster and easier access to primary care and/or diagnostic services and encouraging them to present earlier when they have symptoms; encouraging GPs to lower their thresholds for investigating and referring patients; ensuring that commissioners do not block referrals and that hospital clinicians and managers welcome, rather than discourage, referrals (subject to reducing current capacity restraints). All of this will require building support for the changes across the NHS as well as providing the necessary funding. Some of this funding will need to be used for building capability and supporting cancer alliances to work with other local NHS partners to improve services.
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