Executive summary

This report offers an account of what has changed since 1995 in cancer services in England. It assesses the NHS Cancer Plan and the two subsequent strategies, from 2000 to 2015. We present data on the progress in treatment and outcomes of cancer services (not including end of life care). We also explore what factors might have contributed to success and failure in how cancer services developed. In the absence of formal evaluation of the National Cancer Programme between 1995 and 2015, we conducted interviews with nearly 70 people involved in creating and implementing the cancer programme, to understand what these national strategies were designed to do and how they worked in practice. These included senior clinicians, managers, civil servants and researchers, from the Department of Health, the NHS and charities.

Areas where progress has been made

  • Significant improvements have been made on mortality, survival rates and patient experience of cancer care over the past 20 years.
  • Progress can almost certainly be attributed to a combination of better service organisation and the introduction of more effective treatments.
  • Delivery of care by multidisciplinary teams (MDTs) was the exception rather than the rule 25 years ago. This has now changed radically, though not all teams are functioning optimally.
  • The cancer workforce has expanded considerably. Cancer nurse specialists have become the norm, and patients are more likely to receive treatment in specialist centres, where appropriate. But as demand has grown, workforce shortages have re-emerged, particularly in diagnostic specialties.
  • Technology for cancer care has improved markedly, both in relation to diagnostics (eg magnetic resonance imaging (MRI), positron emission/computerised tomography (PET/CT) and molecular markers) and new treatments (eg laparoscopic surgery, better targeted radiotherapy and new drugs).
  • Data/intelligence on cancer has improved significantly. This can help monitor progress at both national and local levels, though further improvements are still needed.
  • Government intervention in the form of anti-smoking legislation has contributed to a steady decline in the largest preventable cause of cancer.
  • Measuring patients’ experience of cancer service is now accepted as essential to understanding the quality of care, as is the importance of people’s wellbeing after cancer treatment.

What has driven progress on cancer?

A consistent theme that emerged from many of the interviews was the creation of a broad community for change through the National Cancer Programme between 2000 and 2015. It is possible to distinguish separate components of this that, in combination, were perceived as having created a sense of momentum, particularly among clinicians.

Evidence-based guidance, intelligence and research

  • Development of guidance (Improving Outcomes Guidance) for individual cancers setting out the design of services most likely to achieve good outcomes.
  • Improved intelligence, including big improvements in cancer registries, the capacity to link with other datasets such as screening and hospital data, good-quality clinical audits for some cancers, and the development of cancer profiles giving comparative information at primary care trust (PCT)/CCG, GP practice and network levels.
  • Establishment of cancer research networks, mapped onto the service networks, leading to a tripling of patients entering nationally approved clinical trials.

Infrastructure to make change locally, with support to build capability

  • Establishment of cancer networks, which were funded with permanent staff, brought together commissioners, clinicians, managers and patients across organisational boundaries to oversee the local/regional implementation of national strategy, and plan improvement.
  • Cancer Services Collaborative (a centrally funded programme using quality improvement methods) worked with clinicians and managers within networks and trusts to redesign services. Cancer networks also had their own development programme to share learning.
  • The National Cancer Peer Review Programme (with patients as part of the team) ensured compliance with the recommendations in the Improving Outcomes Guidance, and the results were published to boost transparency.

Adequately supported leadership

  • A full-time National Cancer Director from 1999, supported by a national team in the Department of Health, an outward-facing National Cancer Action Team and a dedicated team overseeing cancer screening.
  • Clear direction set out in comprehensive cancer plans/strategies and a comprehensive overview of the quality of care being delivered. Data from registries, audits, NHS trusts, screening and research all flowed into the National Cancer Action Team.
  • Extensive engagement with key stakeholders and development of a strong cancer community (comprising clinicians, managers, patients, cancer charities, professional colleges and societies, industry and researchers).
  • High-level political support, and a strong media focus on cancer, reflecting public interest, fear and concern about cancer.
  • Targets for cancer waiting times, supported by intensive support to trusts which were struggling to achieve them.

Adequate funding, and some increases in workforce

  • Dedicated funding for some aspects of cancer (especially in the early years of the programme).
  • Appraisal by the National Institute for Health and Care Excellence (NICE) of new cancer drugs, with (from 2001) a funding directive to PCTs to make the drugs available within 3 months of a positive appraisal.
  • Expansion of the workforce in the early years of the programme, and the introduction of new workforce models (eg the four-tier model for radiographers to enable expansion of breast screening).

Areas where there has been less progress

Despite these improvements, England’s 5-year survival rates (and those of the UK) have not caught up with other comparable countries. With the exception of breast cancer, the gap has not narrowed, as other countries have also improved. The NHS Cancer Plan promised cancer services that would be the best in Europe and that cancer care would never again fall behind. This represents the ‘unfinished business’ that is the theme of this report, and a number of factors have been identified as possible explanations for this.

  • The focus in the early years of the programme was largely on secondary and tertiary care. Although the importance of primary care was recognised in both the Calman–Hine report (1995) and the NHS Cancer Plan (2000), it was not clear what actions needed to be taken.
  • Until the early 2000s very little health services research had been done on primary care and cancer. This is now an active field of research with high-quality researchers, often funded by the Department of Health and Social Care/National Institute for Health Research (NIHR) and Cancer Research UK. This research has, for example, led to the development of evidence-based guidelines on which patients should be investigated or referred to hospital with possible cancer.
  • In the early phases of the National Cancer Programme, too little emphasis was placed on improving the rate of early diagnosis, which accounts, at least in part, for the poor survival rates in England, relative to survival rates in other comparable countries.
  • It took time to generate an adequate evidence base and use it to change attitudes. In the early years of the programme, doubts were cast on the validity of the international cancer survival comparisons, as cancer registries were undoubtedly missing some patients. Cancer registration in England is now among the best in the world, however survival rates remain comparatively poor.
  • In the late 1990s some cancer experts doubted that delays of a few months in diagnosis could impact on survival rates significantly. This has now changed, as a result of being able to link cancer data with hospital and screening data. This has demonstrated the magnitude of late diagnosis, and its impacts on survival. There is now almost universal consensus on the importance of early diagnosis of symptomatic patients.
  • Research has suggested that the gatekeeping model of the NHS (where GPs predominantly have responsibility for providing patients with access to diagnostics and hospital care) may deter patients with possible symptoms of cancer from seeking advice from their GP and may deter GPs from investigating or referring patients.
  • New models for access to diagnosis are now being tested, but have not yet been widely implemented.
  • Delivering the increases needed in the cancer workforce has been consistently difficult. Diagnostic capacity in particular (endoscopy, imaging and pathology) has not expanded to meet demand and lags behind that in other comparable countries, creating a barrier to early diagnosis. Financial incentives to encourage trusts to increase and maintain their diagnostic capacity have, to date, been inadequate.
  • It was only in the later stages of the cancer programme that the needs of people living with and beyond cancer were better understood. A validated measure of quality of life after cancer is still being piloted.
  • Variation in quality of secondary and tertiary cancer services undoubtedly persists. However, rigorous assessment of the quality of individual cancer services is no longer routinely undertaken.
  • Improving cancer survival has been identified as a key aim in each cancer strategy. Despite this, there has been a lack of accountability for achieving this at a local level.
  • Some of the key metrics needed to monitor progress (eg stage at diagnosis) have only recently become available throughout the country.
  • The disruption caused by the reforms introduced in 2012 led to a loss of momentum on improving cancer care, which has still not fully been regained. National leadership and support for cancer networks was significantly downgraded, impacting on progress on cancer.

What needs to happen for cancer services to catch up?

The announcement by the Prime Minister (in early October 2018), of a new cancer strategy to form part of the NHS long term plan is extremely welcome. In particular, the Prime Minister focused on early diagnosis and set an ambition to increase the proportion of patients diagnosed at early stage from one in two to three in four people by 2028. This should help to eliminate the gap in survival rates between England (as well as the rest of the UK) and other comparable countries. The Prime Minister also spoke about reducing the age for starting bowel screening to 50 years, investing in scanners and rapid diagnostic centres.

Achieving this goal will be challenging, especially as the proportion of patients being diagnosed at early stage has remained almost static between 2015 and 2017. 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). Based on the experience of the last 20 or so years of the National Cancer Programme, whole-system change will be needed if the unfinished business of closing the cancer survival gap between England and other countries is to be completed.


  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.

Lessons for the future?

This report describes what was attempted to build support for the earlier phase of the National Cancer Programme. The actions described above would require a similar effort but across broader territory, including primary care. From our analysis of what has gone before, it is possible to identify a set of ingredients that have to fall into place to improve the diagnosis, treatment and care of patients, whether in cancer, or any other condition:

  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.

Looking back over the past two 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. 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) has 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. Although the wheels are now turning again in the form of cancer alliances, integrated care systems and 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 support and motivate clinicians and managers across a complex service. Many of the ingredients listed require attention to be given to beliefs and behaviours, alongside the evidence and skills to implement change. Without these, the injection of resources will not be effective.

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