NHS Cancer Performance – a helter-skelter of political incompetence

Heigh ho, its off to work we go. Those dwarves in Snow White had an enduring philosophy of hard work, tempered by compassion. I think their approach is mirrored by today’s cancer advocates, whether from professional or patient ranks. We have to speak truth to power, whether that is a wicked witch or a Tory government.

This government’s attitude to cancer stinks. It is now getting better after eight years of disinterest and decline. No doubt when challenged the government will point to new money arriving, they will not record the fact that performance standards are now lower than in 2012 when those standards were last revised and accepted, by them. Most of those standards repeated what had been in place for many years already and had been measuring the success of the policies and practices put in place by Professor Sir Mike Richards, the first national cancer director. The Coalition government had been in power for two years by 2012 and the disastrous policies of Conservative Secretary of State for Health Andrew Lansley (now ennobled) were beginning to bite. He was sacked in 2012 but the policies did not change.

This decline will continue, possibly for several more years. It takes time to turn the tanker round (another misplaced metaphor). It took time for the tanker to go off course in the early years of Tory rule because there was great momentum. The loss of the Cancer Networks in 2012 destroyed the NHS’s ability to learn and adapt in small ways, the dispersal of experienced staff with extensive knowledge into other roles wiped out a major resource. The recent invention of Cancer Alliances will hopefully correct that mistake but it will take time for the expertise to rebuild.

We have also seen major steps forward on such issues as early diagnosis. Sir Harpal Kumar’s Task Force produced an excellent report which the NHS accepted. What is not in the report is a recommendation that hospital operating capacity needs to expand to cope with more people being diagnosed earlier. The austerity-led reduction in capacity, seen by waiting lists in almost every surgical discipline, is impacting on cancer treatment targets and will continue to do so, possibly for years.

Maybe politicians did not see the linkage. Cutting nursing numbers impacts on areas such as surgical recovery, intensive care and theatre staff. Without the proper safe staffing levels surgery cannot take place. Closing one operating theatre for half the week so you can use what staff you have left more efficiently extends waiting times. What chance do performance standards have then?  At the same time improve diagnostic procedures in primary care thus increasing referrals into secondary care, and you extend the queue at the other end.

The equation is clear. One good + one bad = all bad. Sorry Harpal.

Increasing cancer resources with more surgeons or oncologists will not solve the cancer waiting time issues. It requires a major overhaul of staffing resources down the whole chain of treatment increasing the capacity of the NHS. It takes three years to train a nurse to staff level, and then further training for specialist care. At the very moment when we are about to exit the EU and possibly lose access to a major staffing resource, what chance rapid improvement?

Talk about screwing it all up. How to kill people invisibly. We made huge steps forward in the early 2000s. The now largely forgotten report by Professors Sir Ken Calman and Dame Deirdre Hine in 1995 records what cancer care was like then. We may not sink back to those standards but 2004, here we come.

The raw Performance Data is here

Excellent commentary on the data in the Guardian

PS: a real delight to see and have a chat with Sir Ken Calman at the NCRI Conference last week. Enjoying his role as Chancellor of Glasgow University where he first became a professor in the early 1980s.

In search of creative input for PPI

Patient and public involvement in research has been gaining a lot of attention in the professional journals recently. I am not sure whether this is a turning point or just a matter of coincidences. It seems that either researchers have woken up to the idea that this is an area where research is needed (it is) or that it is where opportunities lie for writing papers which enhance their CVs.

The paper which seems to have been written solely because it could be written, yet offers nothing to our understanding of patient and public involvement, could be called futile.  However, a paper which is has futile conclusions is not necessarily a bad paper, it may just point to a shortage of evidence. The paper which predictably has futile conclusions, even if the methodology employed is well-validated and robust, should be identified by peer review and rejected. The pursuit of futility is not science.

One problem here is that peer review in most professional journals rarely uses people who work in, or genuinely understand, patient and public involvement. The journals just don’t know who they are and most cannot be bothered to find out. So the chances of a reviewer challenging a paper as having little or no value is small. Usually such papers are sent to methodologists to review, a task they will relish, grist to the mill so to speak.

One of the reverse problems in patient involvement is that a good paper seeking to identify new understanding will be criticised by the methodologists because there is a lack of evidence to support its creative thinking. The lack of evidence is because researchers have not sought it. It can be partly attributed to the fact that creative understanding of patient involvement by those who do understand it is rare, and the ideas on which good research can be built are not aired publicly because journals will not publish them.

Quite a challenge!

We have recently seen a paper looking at “synthesising conceptual frameworks” for PPI in research. It is a commentary by methodologists on a systematic review first published in 2013 which put forward such a conceptual framework and identified priorities for research. The commentary is highly critical of the earlier work and goes on to state; “…this critical appraisal has usefullyhighlighted that there is a continuing, even urgent, needfor a more rigorous synthesis of conceptual frameworksfor PPI.”  The commentary offers no ideas about further research, suggesting that its authors actually know nothing about PPI, confining its suggestions to a need for “more robust conceptualisation” of  PPI frameworks.

From the viewpoint of one involved in patient and public involvement this verges on self-justifying nonsense. What PPI in research heeds is more people getting on with it, professionals and lay people working together.  Our ‘frameworks’ need to be created, reviewed, changed, evolved, reported, and all done in a timely way so we can all learn together.  Conclusion noted, this paper adds nothing. There may be other viewpoints but from that of PPI this was a research paper written for the sake of it. I hope it looks good on a CV.

Contrast the approach of another recent paper, also a critical commentary. It looked at the NIHR Standards published earlier this year. The Standards are seen as a step forward but many limitations are identified. Some are “simplistic”, even “optimistic”, and there is a need for guidance which can make implementation relevant to the objectives of PPI in any organisation or situation.  The conclusion states that the Standards: “… fail to address fundamental questions about when, why and with whom involvement should be undertaken in the first place.”  It goes on to add :“By addressing the justifications for patient and public involvement up front and acknowledging that there are contexts in which some types of involvement are inappropriate, a future version of the Standards or another guidancedocument could provide researchers with the overarching clarity they need.”   Here is some real value-added.

Both papers are addressing the need for better understanding of PPI based on good evidence. I would maintain that we must not be confined by traditional evidence-based approaches.  This is not about medicine but is about people.  We need to develop research ideas through creative understanding of what is happening and what has happened in the world of PPI in research, through understanding the people involved.  If we are to move forward effectively we need those creative ideas to help researchers identify where evidence about PPI can add value, to help develop the new ‘frameworks’ – they will start conceptual but require practical experience so they can become real.

That will keep up the momentum which PPI is developing.

The two papers referenced:

Synthesising conceptual frameworks for patient and public involvement in research – a critical appraisal of a meta-narrative review    David Evans, Noreen Hopewell-Kelly, Michele Kok and Jo White   BMC Medical Research Methodology (2018) 18:116    https://doi.org/10.1186/s12874-018-0572-0

National Standards for Public Involvement in Research: missing the forest for the trees     McCoy MS, Jongsma KR, Friesen P, et al.     J Med Ethics Epub ahead of print: [accessed 12thOctober 2018]      doi:10.1136/medethics-2018-105088