Towards a new cancer strategy – background and context

I have had the privilege of working with Harpal Kumar, Chief Executive of Cancer Research UK, when I was an active patient advocate with the cancer research community working with NCRI. Harpal is now chairing the Taskforce charged with putting together the next Cancer Strategy for 2015-2020.  There could not be anyone better. As an intellectual challenge it is well within his compass, he understands the cancer community extremely well, and he is a fine and well respected leader. Its an interesting challenge and an important one.

The Taskforce itself is an interesting group of people. It is relatively small, numbering 18 people, all with significant experience of cancer. There is one patient, Richard Stephens, a good friend of mine. As one would expect it includes the current NHS England Clinical Director for Cancer, Sean Duffy, who has had the difficult job of holding things together through all the recent changes, and Professor Sir Mike Richards, the former National Cancer Director (once known as the Cancer Czar – a title thankfully long shed) and now Chief Inspector of Hospitals.

Mike Richards experience of this process will be invaluable. The first Cancer Plan was published in 2000 – on the day I had the scan which confirmed I was in remission after four months of chemotherapy. The move for such a plan had started with the Calman Hine Report in 1995. That was 32 pages long, including references (3 pages) and appendix (another 3). Sir Kenneth Calman who co-authored that report with Dame Deirdre Hine, is now retired and using his considerable abilities as Chairman of the National Trust for Scotland, among other interests.

To develop the Cancer Plan a small group of people, many of whom had worked on the Calman Hine Report, came together in 2000 led by Mike Richards who had been Cancer Czar for just over a year. He had spent that year talking to as many people as he could. The aim was to put the plan together quite quickly, no long consultations, the talking had been done.

The Cancer Plan 2000 was the big game-changer. It was 96 pages and full of ambition. In accepting it the government provided the resources to make the changes. Among them were initiatives already underway like the pioneering work of Professor Bob Haward on developing Improving Outcomes Guidance. A wide range of other initiatives, some of which were almost ready but unfunded, were also fully empowered.

It also complemented the work in the research community to get co-ordination at a national level. The two large cancer charities ICRF and CRC came together as Cancer Research UK and together with government and other cancer research funders, created the National Cancer Research Institute (NCRI). At the same time the government had taken on board the message that running clinical studies properly within the NHS required dedicated resources. To manage and fund that they created the National Cancer Research Network (NCRN). This was led by Professor Peter Selby from Leeds (a Calman Hine veteran) and Professor Janet Darbyshire from the Medical Research Council.

Cancer treatment and care moved forward rapidly. Multi-disciplinary teams (MDTs) became the norm. Hospitals organised their cancer units, or cancer centres – more fully equipped and treating a wider range of tumours. More resources became generally available. Accrual into clinical studies grew from under 4% of all patients to some 20% today – no other country comes near this. Importantly we have also seen survival rates rise, perhaps not always as much as we would like.

It was the reasons for that which became clearer as the time came for updating the plan. The Cancer Reform Strategy in 2007 was a very different process. Professor Mike Richards brought together a wide range of cancer experiences to look at how the strategy could be refreshed. I was asked to serve on the Advisory Board, and there were several other several patients. There were a number of working groups – early diagnosis, survivorship, information and prevention among others. The report was 135 pages long and is far too comprehensive to try and summarise here.

I felt thoroughly challenged being involved in this process, keeping up with the broad sweep which was being addressed while trying to understand the minutiae and think about it all so I could contribute with a patient viewpoint. This was an enhanced experience because at the same time I was being diagnosed with a recurrence. I was unable to comment on the final draft as I was in hospital recovering from the amputation of my lower left leg.

There were many new developments resulting from the Cancer Reform Strategy. I will mention three. NAEDI, the National Awareness and Early Diagnosis Initiative, started as something quite nebulous, short of funding and poor levels of interest. It has slowly moved to the centre as the powers-that-be started to understand the message that the UK’s survival rates were not going to improve if we did not address the late diagnosis issue.

That was helped by the information initiative, now the National Cancer Intelligence Network. This has revolutionised our understanding of what is actually going on in diagnosis and treatment. Its short study of cancer diagnosed via A&E was shocking, although the newspapers totally ignored it. It could have become a scandal and moved the debate up a notch or two. That was important to NAEDI and it lies behind the political and operational importance attached to one-year survival statistics.

The National Cancer Survivorship Initiative has become the NHS Living with and Beyond Cancer Programme, part of the NHS itself, although still involving Macmillan Cancer Support. The working group I chaired did some deep thinking about what survivorship involves for those still with cancer.

The new government in 2010 was not, of course, going to do nothing. It had to tinker and put its own stamp on matters. The focus on Outcomes meant that emphases changed but the heart of cancer services is treatment and those structures are now robust and effective. Thank goodness for that because at a strategic level, which requires political commitment, cancer has drifted in recent years.

The Cancer Taskforce has a different emphasis from its predecessors. Prevention and diagnosis are at the top of their list. Better integration in health and social care for patients. Information and decision support for patients. Integration of research to encourage innovation including the adoption of technology and advances such as stratified medicine. Data and intelligence as a driver of change and improvement. Support for commissioning and leadership. Most of these ideas could not have been dreamed of in the earlier reports.

So the Taskforce will work quickly and report fairly soon after the election. No political party has committed to accept it unequivocally – there are clearly going to be some financial issues for a new government to address – but they cannot ignore it because the report is actually to NHS England and they have (almost) agreed to accept it.

It will be interesting to see if it follows one trend. In 1995 – 32 pages; in 2000 – 96 pages; in 2007 – 135 pages. In 2015 – 167 would be predicted by one method of calculation, 212 by another, even more by others. We shall see.

I wish Harpal and his 17 aides (plus no doubt a talented secretariat) good wishes in their task.