Your diagnosis madam – collateral damage

No cancer patient should be seen as collateral damage after a clinical procedure which diagnoses  otherwise unexpected cancer.

That is what happens with most uterine leiomyosarcoma and some other gynaecological sarcoma diagnoses. These patients are among the worst treated cancer patients because not only are they usually diagnosed after radical surgery, many are subjected to inappropriate adjuvant radiotherapy with consequential long term side effects, and some are given adjuvant chemotherapy which has no evidence of benefit – except perhaps to assuage the guilt of their gynaecologist.

The gynaecology community has been challenged over these issues yet takes few steps to try to answer the problems. In the UK we are moving forward by requiring all these patients to be referred for joint care at diagnosis by a specialist sarcoma team. Hopefully this will reduce the burden of adjuvant therapy, improve follow-up and open up access to appropriate new sarcoma treatments. This has met consistent resistance but the NHS is enforcing it. Elsewhere in the world it does not of course apply.

Gynae sarcomas account for less than 1% of all gynae cancers. Many are hidden by uterine fibroids and are only discovered after surgery. Sometimes that surgery breaks up fibroids and distributes sarcoma cells around. As far as gynaecologists are concerned that is ‘tough luck’, nothing they could have done better, disease spreads, patient dies (eventually), collateral damage.

Where there are problems in healthcare there is usually research. Around gynae sarcomas the only research is with drugs for post-operative adjuvant therapy or advanced disease, valuable but not enough and nothing yet found to make a significant difference. Gynae and sarcoma specialists collaborate in these studies. There is no research into trying to identify a biomarker from blood or imaging to try and achieve a diagnosis before surgery where fibroids are concerned. There must be other ideas. No-one is ‘thinking outside the box’. Sarcoma clinicians cannot do that research, they don’t see the patients until they are already collateral damage.

I first met gynae sarcoma patients online in email support lists. I have known several personally and I know some survivors. Of course for some the journey has been supported by good and caring clinicians and its not all bad news. But it is a hidden issue, no-one talks about it. There are so few of these patients to start with that creating a campaign has been impossible. We need to energise this in different ways, its not enough just to be shouting from the sidelines.

The first step is for healthcare systems to openly recognise this problem. In the UK we are slowly moving forward. The NHS is taking steps because of pressure from the sarcoma community. NICE needs to recognise that it has failed these patients. NIHR and other research funders should identify and fund a priority. NCRI should be encouraging researchers. Women’s cancer advocates need to wake up to this challenge. But that is just the UK.

Lets care about collateral damage, research could solve this.

Journal publishing – get rid of the pay wall

There is a situation which we, as patients, have been slow to challenge.

If I say that patients agree to enter clinical studies, which take data from patients, and reports on those studies are then published in medical journals after due review processes have taken place, and are then put on sale, I wonder if you see the problem.

If we as patients want to see the study result, review the data etc we have to pay – usually a fee around $30, sometimes more. We don’t buy because we do not have the resources. We cannot get free access because we do not belong to a body which licences access for its members through Athens or Shibboleth. So we are left with the abstract, at best. Fortunately a number of journals are Open Access, allowing anyone full access to published reports. Some also offer Open Access as a paid option but notably the High Impact journals will usually only offer Open Access if the study sponsor pays a substantial fee up front.

Patient advocates and those relying on understanding research are disadvantaged by the publications system. Some authors are generous and subject to keeping quiet about it let us have a copy of their study report. Sometimes we are able to find a print copy, take photos on a mobile phone and thereby have a reference copy, but that is getting silly isn’t it?

I started to wonder what the ethics of all this are. Patients freely enter studies, unpaid. Their data is gathered, analysed and written up under an ethical process. If it is then published and they cannot access it, is that ethical? The actual patients in that study may well get a copy of the report from the study team which might answer the direct question, but patient advocates and representatives who could use these data in their work for the benefit of patients do not have such access. Is that unethical, or just hard b***** luck?

What makes this worse of course is that patients and the public fund a lot of this research, whether through taxation or charitable giving.

We have to recognise that publishers have to earn a living and that there are various business models available to them in practical terms. We can only applaud those who have an Open Access policy.

It has to be better than this. I cannot see an easy route through but I hope someone can grasp this nettle and help patient representatives get better informed and become more effective.

Personalised medicine and accelerated access

Once upon a time a new cancer drug achieved marketing authorisation after randomised controlled trials demonstrated effectiveness treating carefully calculated numbers of patients with a given disease or condition. The critical patient outcome for the trials was a comparison between the experimental and control arms using a measure of patient survival which gave a high degree of statistical significance. It was also important that safety was demonstrated and that side effects were tolerable and manageable.

We are entering an era where a drug with a specific mode of action for a specific genetic alteration can achieve marketing authorisation in an accelerated process after small clinical studies, offering no comparative data, using endpoints where patient benefit is unclear, and without long term measurement of issues such as survival or side effects. 

We made this transition, seemingly without open debate amongst stakeholders. The move is justified by the term “personalised medicine”, which in its fullest sense would include radiotherapy and surgery but is usually focussed exclusively on drugs. It has been carried along by enthusiasm and hype and it requires genetic testing, the demand for which is driving costs down. Technology is proving disruptive.

But patients have lost something in this transition. The science behind repeating studies, using control arms, good statistical practice, endpoints with real meaning etc has been built-up over years. It is robust good practice and provides a very high level of certainty that authorised drugs deliver patient benefit safely. Based on the data at registration these new drugs promise hope for a few but uncertain patient benefit overall.

It is important to acknowledge that when a treatment has a high probability of treating a disease effectively then practice needs to change so that relevant patients can be treated without delay.  We are now recognising that in doing so we lose important evidence which is very relevant to patients and society, even if it is less important to pharmaceutical companies.

What about dose determination, treatment sequencing, duration of treatment, combination therapies, toxicity management, quality of life, patient compliance? They all get forgotten in the rush to get the treatment into routine practice where we are reassured that any problems which arise will be handled by doctors. Perhaps, but their experience is not shared and collectively analysed as it would be in a study. Evidence based medicine it is not. Nor is it truly personalised medicine, it is simply drug-centred medicine.

However, patients want it. They want the tests and if they are eligible they want the treatment.

Some patients will be denied by cost. These drugs are expensive. Larotrectinib, approved by the FDA for a rare mutation in a wide range of cancers based on data from 55 patients, is estimated to cost over $330,000 a year – assuming anyone lives for a year. Compassionate and discounted programmes are available but no major HTA body has yet got into discussion with the drug company. There will soon be tales of patients selling homes and using crowd-funding to raise the money for drugs like this.

We must move fast to apply scientific process and rigour to personalised medicine. It is not about denying treatment to anyone. Drug companies must not determine what happens, much as they might wish to. At present they are succeeding. We must change the balance. Put patient interests at the centre of drug regulation, not pharma interests.

So what are our interests? Safety (the minimum effective dose), side effects (nature, treatment, duration), duration of response to treatment (combination therapy, therapy sequencing), longevity (real life outcomes), quality of life (in all its dimensions), holistic issues of care, cost.

Establishing this kind of treatment optimisation is a theme supported by European research organisations, professional associations, patient groups and by a considerable body of influential MEPs. The move calls for protocols to guide treatment and for data to be gathered centrally for all treatments which use an accelerated approval process. By gathering data prospectively according to a protocol we can avoid bias and a picture can emerge dynamically as a treatment gathers numbers of patients. Quite separately the FDA has suggested a form of ‘synthetic’ control group based on historical data to empower comparison. 

This might result in treatments which are not effective, and we might see treatments which patients dislike, using patient reported outcomes. These treatments could be withdrawn, that would be an innovation. This kind of treatment optimisation approach importantly provides a framework for testing lower dose levels than were used in the trials for drug registration. This is not a favoured idea of drug companies either.

Support Treatment Optimisation, it is in our interests as patients.

Sarcoma diagnosis – a new challenge emerges  

Conversations at the recent British Sarcoma Group conference in London (an excellent event) brought up a growing problem with a recent change in the guidance for GPs considering potential cancer symptoms. The idea is that when a GP has suspicions about a soft-tissue lump he can order a direct ultra-sound scan.  When I questioned the chair of the NICE Guideline Group during its development I was assured they had considered all outcomes and my concerns were dismissed. As far as I am aware no specific sarcoma expertise was consulted during the development process.

The question which needs answering is whether the new approach is working for the benefit of patients and/or the NHS.

Prior to the change three years ago a GP was advised to make a 2-week referral to a specialist centre if certain clinical symptoms existed.  More patients were actually being diagnosed from non-urgent secondary care referrals or other routes than from the 2-week system. Hence the change, which made direct access to x-rays (for suspected bone sarcomas) and ultra-sound (for soft-tissue tumours) available to GPs so they can diagnose non-malignant tumours or determine uncertainty which requires expertise.

The problems arise because sarcomas are rare, diverse in their histology and can appear in any location on the body – in fact ‘typical’ is not an adjective applicable to sarcoma. The ratio of benign soft tissue tumours to malignant sarcomas is over 100:1. The rarity means ultra-sound imaging technicians have little familiarity with sarcoma although for bone tumours X-rays can be definitive.

We are finding that ultra-sound imaging reports will err on the safe side. Some tumours are clearly benign but if they have any doubt they are likely to say that they cannot be certain.  So what do GPs do with this uncertainty?  Their uncertainty boundary has shifted so they make a 2-week referral to a specialist centre, even for a tumour which under the old guidance would have been recognised as benign.

Thus specialist sarcoma centres are being overwhelmed by urgent referrals for ‘uncertain’ tumours. Diagnostic expertise is now being exercised by nurses operating triage clinics. This allows their consultant colleagues to spend longer with the fewer potentially malignant cases who come through the triage.  The people with sarcoma who would benefit from urgent attention are being hidden in a cloud of benign conditions until a late moment in the process. GPs are allowed to opt out of responsibility for diagnosing the benign condition, hiding behind the ‘uncertain’ ultra-sound. Those with benign conditions suffer a journey to a regional specialist cancer centre only to be told by a nurse that their highly qualified GP must re-consider their case.

Patients are not being respected. The problem is not the principle of the new guidance, but the implementation which has shifted the workload inappropriately. Those picking up the pieces are the specialist centres overloaded with diagnostic work. The new guidance was intended to help them and it is doubtful whether this is leading to earlier diagnosis of malignant tumours either.  The whole approach needs review in the light of the experience the sarcoma centres are reporting and any review must be in collaboration with them, rather than imposed by a committee led from primary care.

Ask the right questions, get the right evidence

This is the second of my two thoughts about pressures being faced by patient advocacy.

There have been a number of recent articles in journals lamenting the failure of patient advocates to respect the principles of evidence-based medicine (EBM). It is a consistent low grumble from the science community, to which a small group are deeply wedded, while a majority probably have some sympathy with the point but also have some sympathy with the stance being taken by patient advocates.

There has been a change in the attitudes of regulators. Not that long ago they too were wedded to the evidence-base and they would maintain that this principle still underpins their decision-making. But in that decision-making, and therefore in the processes and procedures they employ, they are being more pragmatic. That has been partly driven by patient advocacy.

Some voices in the regulatory community are also identifying the issue which I believe needs to be addressed and which EBM protagonists seem to be studiously ignoring.  It is quite a big question.

Are we gathering the right evidence in clinical trials and in the way we measure and report real-world clinical care?

No-one in medical research seems to be addressing this effectively. A few are tinkering around the edge of the issue and for some, the idea that we are not gathering the right evidence, is like voicing heresy.

Cancer clinical trials are focussed on some measure of survival or tumour response to treatment. The so-called ‘gold standard’ measure of Overall Survival becomes difficult when a treatment is one of a succession of different therapies. A wide range of surrogate measures are used as a substitute. These are often dependent on some degree of investigator interpretation so are inherently unreliable, a factor which it is convenient to forget.  Side effects of treatment are an important issue and these are reported too, usually using an investigator applied judgement of severity against the CTCAE standards.

All this is a focus on objective measurement of the disease and the effect the treatment has on the disease. No-one is denying that this is important but where are the measures focussed on the patients themselves and the effect on them, their subjective reporting.

This is what patient advocates have been pursuing with their regulatory campaigns which the EBM stalwarts claim ignore the evidence-base. The advocates have an evidence-base in patient stories and anecdotes, but it is not one which they are in a position to measure, the professionals are not measuring it and have been ignoring it for more than twenty years.  So the EBM complainants, writing stridently about patient advocates not playing their game, would do well to look at themselves and their colleagues.

Are they asking all the right questions: are they gathering all the right evidence?

There is a side issue here about patient involvement. It is an issue which patient involvement cannot easily address and could be used as an excuse for inaction. Untrained involved patients do not necessarily see this ‘right evidence’ issue, they are often overwhelmed with understanding the planned outcomes and endpoints in a study. This assumes, of course, that they are consulted at a timepoint when they can actually input such ideas.

The second side issue is that we have much better ‘big data’ now than we have ever had. The ability to look at clinical practice across years, aggregating the experience of thousands of patients, means that retrospective analysis can provide valuable information and new insights. The question is, are we asking all the right questions in these analyses if the right questions were not asked when the data was being first gathered?

So the challenge for the data analysts is not to turn EBM into a self-justifying paralysis of ideas which ignores the patient?

Pressures are building on patient advocacy

Two pressures are building on patient advocacy. We do need to draw a line here between patient advocacyand patient involvement. The former are patients or professionals working towards a specific objective such as getting a new treatment approved, or raising awareness of an issue amongst politicians. That can be correctly called advocacy. Patient involvementis the drawing in of patients with ‘lived experience’ to a structure so that their experience based input, whether considered or ad hoc, can be taken into account alongside other views. There is of course no clear boundary line, partly because the same patients can be doing both. The two terms can be confused and issues which apply to one can also be inappropriately applied to the other.

What are these two pressures, and why are they unique to theadvocacyagenda?

The first is the influence of pharma companies, the funding they provide to patient charities and the influence that the funding opens up. There are regular, sometimes well informed, articles in both professional journals and the wider press raising concerns.

These concerns are real because recent history shows us what can happen. One example was a breast cancer charity that accepted funding for a policy post which actively promoted that pharma company’s drug to politicians and created patient activity supporting it. Quite often funding was sheltered through a local PR company.  Matters became more subtle in the mid 2000s and funding related to ‘projects’ rather than core activities. One not unusual ‘project’ was funding charity staff to attend an educational conference at a foreign and very pleasant venue, all costs covered. Regulations which required openness about funding followed and pharma companies now declare who and what they have funded in great detail. Charities have no such regulatory requirement from the Charity Commission although many do declare what they have received and for what purpose. Some healthcare charities will not accept industry funding at all and declare that policy openly. It is not tidy and while this lack of openness remains there will always be critics eager to point fingers at one or the other party.

Where this becomes an issue is with regulatory affairs. Patient groups and charities are often asked to provide an input to regulatory discussion, usually a paper, sometimes representation at meetings. Questions about financial influence are part of the preparation and a declaration of potential conflicting interests is requested. Some regulators are less searching than others.  Charities all have a different approach to completion of these requests and I do not believe that any regulator has a requirement that the CEO must sign the declaration.  Understandably charities which have little or no involvement with industry find these forms tiresome, not always understanding their purpose. The aim is not to eliminate input but to provide a perspective which reflects the real-life of working with and supporting patients. I have spoken with regulatory committee members who tell me they weigh up what is put forward by patient advocates at a meeting, taking into account the declared potential for conflicts of interest, but not discounting the input provided.

It is time matters were tidied up. The Charity Commission could regulate how charities declare commercial grants in their accounts and charities themselves could carry a declarations page on their website, as some already do. The regulators could work together to have a common declaration approach and individual advocates should make declarations (already required by some regulators) so that their personal situation is clear.

If there was this kind of clarity pharma company lawyers might be able to stop twitching so much and make the matter of financial support where it is proper, appropriate and open happen more easily. In addition researchers or journalists who get a ‘bee in their bonnet’ about inappropriate influences could be quietened, although I doubt they will ever be eliminated and, to be fair, the questions need to be asked.

The second advocacy influence is about understanding evidence-based medicine. It overlaps with the first issue above because some pharma companies could be accused of fostering a preparedness to ignore evidence. More about that in my next contribution to the debate.

 

 

Questions, questions … but can we get them answered?

Academic interest in patient involvement has been dominated recently by evaluation. We at last have a growing recognition that involvement is not an intervention, like sticking a needle in, but an influence over process which acts subtly and sometimes covertly to effect change over a period of time. There is rarely a single identifiable point of ‘impact’, the change may be subtle and only evident through reporting by those involved, researchers, managers, funders and patients themselves.

So what is the next challenge for our researchers? There certainly seems to be plenty of  content, the challenge is finding the questions to resolve.  Lets try a list of unanswered questions, not worded yet as proper research questions and to be fair, some might not make it that far:

  • How do we draw the lines between patient and public in involvement?
  • What is “lived experience” for the purpose of defining patient involvement?
  • How do we ensure we get the right people for the right role?
  • How do we report involvement as a key element of research?
  • If we sack an involved patient how do we report that?
  • What questions should we ask researchers to help find the value of involvement?
  • How should we ask researchers those questions?
  • How can we remunerate involved patients without creating conflicts of interest?
  • Are there ethical issues we should address to empower more effective involvement?
  • Is effective involvement pragmatic, or driven by philosophical and cultural change?

That’s ten to start with. I could go on.

One of the challenges is getting these questions, and others like them, aired. In this world of evidence based medicine research proposals are usually supported by a literature search from which the prospective funders can identify that the research question is a valid one. Thus research builds up in an organic manner, with a traceable provenance. In patient involvement there is little evidence, as yet, in the literature with the result that provenance is largely impossible to identify. One of the challenges for researchers who wish to raise questions like these, even as a commentary or discussion point for a journal, is that there is no evidence to point to that the question is important. The editor will not publish. It is a chicken and egg situation.

I am suggesting something which steps outside the usual ‘evidence based medicine’ criteria. As usual, remember that this is a patient making the suggestion, I have only one interest – getting questions answered so that patient involvement improves.

My appeal is that those journals which are happy to report or commentate on patient involvement, few but growing in number, encourage such new questions to be aired and debated relying only on the evidence that there is a question which informed people are discussing. The aim is that researcher groups will pick up on these ideas and have a reference base, however small, to work with when they seek funding for a full research project.

SOME THOUGHTS ABOUT THE NHS LONG TERM PLAN

I do not suppose that I am alone in finding that as far as cancer is concerned the NHS Long Term Plan, published on Monday, is admirable if somewhat underwhelming and, to be fair, cancer is only a small element in the whole. Its primary focus is on diagnosis.  There is no mention of the loss of valuable skills caused by Andrew Lansley as Secretary of State for Health in 2010-12, although work on Cancer Alliances to mend the damage proceeds.

The paragraphs on cancer in the Long Term Plan start with the following:

3.51. Cancer survival is the highest it’s ever been and thousands more people now survive cancer every year. For patients diagnosed in 2015, one year survival was 72% – over 11 percentage points higher than in 2000.

As a general point that should be borne in mind, even if NHS idiosyncrasy was not taken into consideration, evolution in clinical practice would account for much of that improvement. Indeed it can be argued that if progress on the 2007 Cancer Reform Strategy had not been politically diverted we would be showing even further improvement.  Things have obviously moved on and while not all of the 2007 ambitions were achieved the NAEDI National Awareness and Early Diagnosis Initiative, led by Cancer Research UK for the last 10 years, has been critically important. It identified many of the factors which result from the behaviour of patients, GPs or the wider NHS, in the diagnostic process and it underpins what is now planned.

The NHS Long Term Plan has these promises.

Assuming that full funding for these developments is forthcoming in practice and that staffing issues for radiographers, radiologists, pathologists, laboratory staff, nurses and oncologists of all kinds are addressed (given the effects of the B word) this will be a very welcome development and will go a long way towards meeting the cancer survival ambitions.

There is however a shadow, identified in the Health Foundation report Unfinished Businesspublished shortly before Christmas. This is the role of GPs as ‘gatekeepers’. Those with undiagnosed cancer rely on a GP having suspicion and initiating tests (the right tests) or making a referral. That will not alter although the frustrated will be able to self-refer to a Rapid Diagnostic Centre. These will certainly pick up some of the otherwise undiagnosed but not all. Indeed there will be some who attend a Rapid Diagnostic Centre who may not be diagnosed early – a small percentage of false negatives come from almost any test, there are always interpretation issues and some rare cancers have barely discernible characteristics at their early stage.  So from a patient viewpoint this is a welcome step forward but quantifying its potential is massively uncertain and success will rely on the skills levels available in the Diagnostic Centres, especially those located at a distance from a major cancer centre.

3.52. This Long Term Plan sets a new ambition that, by 2028, the proportion of cancers diagnosed at stages 1 and 2 will rise from around half now to three-quarters of cancer patients.

In 2007 we could not have stated an ambition in those terms. This target comes from the work that has been done on data, initiated in 2007. The National Cancer Registration & Analysis Services is a world leader in cancer data. In each tumour type the push to record staging data at diagnosis in the initial cancer registration is resulting in a much more accurate picture of prognosis at diagnosis. This can be compared with the eventual treatment outcome and also provides for targets such as this one.

The NHS remains excellent at creating ambitions while overlooking some of the issues. There are two things evident in the NHS Long Term Plan. First, it is not a plain English document.  Second it did not involve independently minded patients in its development but we have now come to expect that. Patient involvement has been reduced to tokenism in NHS cancer service provision. It cannot be described as patient-centred any more and a key weakness of the whole structure is that the voice of end-users is missing. The charities, good as many of them are, are not a substitute.

On the matter of creating ambitions while overlooking some of the issues I find it hard to believe that a faster diagnosis standard for sarcoma will emerge without resourcing specialist sarcoma units to handle it. Pathology skills, one example, are already at a premium. Over 50 primary diagnoses, with many variants by location, histology and surgical feasibility, suggest that words like “all” and “full”, which appear throughout the new plan, could be unrealistic. The case for genetic profiling to take over the challenge has no evidence base and apart from profiling the whole population I cannot see it working for sarcoma. I should like to be proved wrong.

IN SEARCH OF CLARITY

There have been some thoughtful blogs recently on the subject of PPI in research from Simon Denegri (headless chickens) and Jim Elliot (mis-selling PPI), and an excellent editorial in the BMJ on evaluating PPI in research.  It may be time to put forward some of my thoughts about what is not happening and perhaps should be.

Patient and Public Involvement is too generic, the term is too imprecise, to allow it to be other than a mantra for ignorant management to follow.  It is difficult to implement unless those charged with actually doing it really understand what it involves.  As a result Jim’s dislike of the PPI abbreviation is widely shared by cognoscenti and those organisations which thoughtlessly perceive it as a route forward find themselves in Simon’s headless poultry farm. To cap it all after twenty years the research community still questions its value.

So if it is too generic how do we break it down? The immediate thing to do is to separate ‘patient’ and ‘public’.

Being an involved patient means bringing the “lived experience” of a disease or treatment to the table where it is relevant to have that experience available and expressed. In research this need is easily identifiable and a general public involvement is not required. For some roles you need a patient, nothing else works. Simple. Hmmm …

When you go beyond research into the more general arena of healthcare the public voice is important but the involvement of patients is also a need.  What that means is that a large overall part of generic PPI activity is actually about public involvement and the involvement of patients where a research focus is not present. However having patients involved is a management mantra (“look how clever we are, we are patient centred”) so there are contradictions and political expectations to be met.

The National Standards published last year call it all ‘public involvement’.  That distorts it. Research has specific needs .  Sadly these Standards point towards lowest common denominator corporate behaviour, the NIHR ignored my consultation suggestion of having a standard about senior management being actively engaged (over and above signing it off). That is what Simon is now calling for. Evaluation plays no real part in the Standards and that need is well described in the BMJ editorial.

So we have management mis-understanding, inappropriate pressures on front-line managers, lack of terminological precision, lack of ambition, conflciting purpose, no meaningful feedback about performance. Yet, we want more of it. Confused?

The general healthcare need for public involvement is about engaging the community, whether geographical or a community of interest which the organisation serves.  Recruiting, training and supporting public members is different from the processes for recruiting patients to be involved in research.  If there is a specific need for involving patients outside research (eg developing a new therapy suite) these can usually be easily handled because there is a local community involved.

My personal wish is to see the research issues sorted out. PPI in research is focussed on the “lived experience”, first-hand experience of a disease or treatment, and importantly patients are sought for what they can bring as individuals, not just because they belong to a defined community. They can be harder to find and, for example, ensuring that a rarer disease is represented can be all but impossible.  Inevitably this means that there are roles and occasions where a more generic experience is valid but putting in a member of the public solely because they are a member of the public is not appropriate.

We must manage these separate needs separately even when all these requirements may co-exist in one organisation. It must be recognised that they are different and should be managed in different ways.

I am sure that understanding this difference and recognising separate approaches according to need could help Simon’s chickens grow into fine oven-ready birds. Clear ideas about evaluation would probably help. As for a replacement acronym for PPI, assuming we cannot have an acronym-free environment, I give up. Identifying these different purposes will perhaps give focus to evaluation efforts, allowing us to develop involvement with a clear idea of how value can be recognised in all its different purposes.

Footnote: I recognise that there are some situations where the only way of tapping into the “lived experience” is through those who care for or lived with a patient. In these instances the carer’s “lived experience” is valued just as the patient’s would be.

 

https://simondenegri.com/2018/12/11/public-involvement-is-beset-by-headless-chicken-syndrome-in-too-many-organisations/

http://www.drakesyard.co.uk/have-you-ever-been-miss-sold-ppi-why-it-matters-how-we-refer-to-public-involvement/

https://www.bmj.com/content/363/bmj.k5147

 

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.