This report looks back at what has changed in cancer care in England over the past 20 to 30 years. The aim is to consider what has worked well, or less well, and why. Importantly the purpose is to learn from the past, so that these lessons can be applied to cancer care and other conditions in the future.

To do this I have worked with colleagues at the Health Foundation to review the commitments made on cancer at a national level and the extent to which they have been achieved. I am also extremely grateful to nearly 70 colleagues who agreed to be interviewed for this project. All of them have been closely involved in the cancer agenda, but from very different angles. They include politicians, journalists, clinicians, NHS managers and those working for cancer charities. Several have had personal or family experience of cancer.

The report considers all aspects of cancer care, from prevention through diagnosis and treatment to living with and beyond cancer. This leaves one notable exception – end of life care – because I believe this merits an analysis of its own – and clearly doesn’t only apply to cancer.

For cancer management as a whole and for each step in the care pathway that a person experiences, we have considered the factors which enable and block improvement. Some clear messages emerge which I hope will be of value to ministers, national bodies and to those both lobbying for or driving change at national and local levels.

Cancer care was still in the dark ages at the start of my career, some 40 years ago. Some patients were still not being told their diagnosis, with relatives often being told rather than the patient. Even the word cancer was frequently avoided, with terms such as tumour, neoplasm, growth, a ‘little ulcer’ (always ‘little’) or other terms being used instead. As a medical student doing a locum week as a house officer, I was once asked by a consultant to tell a patient’s wife that her husband had acute leukaemia. I did my best, but that was far from good enough.

A few years later when I was considering a career in oncology, a very distinguished consultant asked me ‘why would you want to do that? Don’t they all die?’ Fatalism and nihilism among the medical profession was widespread.

Progress was undoubtedly made in the 1980s and early 1990s with evidence of the effectiveness of new treatments for some cancers, including childhood cancers, lymphomas and leukaemias, testicular cancer and breast cancer. However, the UK was slow to respond to these advances. Although cancer charities (the Imperial Cancer Research Fund and Cancer Research Campaign) provided funding for training of medical oncologists (myself included), the NHS failed to create sufficient consultant posts to employ these clinicians once fully trained. Many were forced to emigrate – to the benefit of countries like Canada, but at the expense of this country.

In the early 1990s, when I was a consultant specialising in breast cancer at Guy’s Hospital I remember being phoned by a colleague working in a district general hospital 50 miles away. He wanted advice on whether to give adjuvant chemotherapy to a 32-year-old woman with breast cancer. I asked whether the disease had spread to the axillary lymph nodes, only to be told that surgeons in that city didn’t remove any lymph nodes for analysis. Similarly, on asking about the pathological grade of the cancer, I was told that the pathologists didn’t assess the grade of a cancer. The size of the cancer had not been recorded. At Guy’s I was used to having all of this information on all patients who were referred to me. I was shocked at the difference in approach between hospitals.

This led me to work with the Thames Cancer Registry to look more widely at variations in the care given to women aged under 50 with breast cancer in south-east England. Wide variations were all too clearly apparent, despite consensus guidelines having been published in the late 1980s in the British Medical Journal.

The experts I have talked to in the development of this report agree that publication of the Calman–Hine report in 1995 was the first major wake-up call on cancer care in this country. Inspired by the Chief Medical Officers of England and Wales (Ken Calman and Deirdre Hine) an expert advisory group on cancer set out the principles underlying good cancer care and the broad structure of services needed to deliver such care. However, this report had no formal government backing, nor did it come with funding. It does, however, mark the starting point for this analysis of progress. I chose 2015 as its end point, as it represents the final year of the last cancer strategy for which I was responsible, (published in 2011).

It has been a privilege to come back to the world of cancer after 4 years as Chief Inspector of Hospitals at the Care Quality Commission. This has given me the opportunity to look with fresh eyes at the challenges of whole system change and to make recommendations for delivering improvements in the NHS, both for cancers and for other conditions.

Professor Sir Mike Richards

Former National Cancer Director, 1999–2013