Waiting for a sarcoma diagnosis

On diagnostic waiting times NHS England has revealed that cancer screening programmes and media campaigns have contributed to a 51 per cent increase in urgent suspected cancer referrals by GPs over the past four years.  This is a huge new diagnostic workload of some 45,000 referrals per quarter. This may indicate a rising GP suspicion rate, and that is very good news, but the number of patients getting an actual cancer diagnosis will be a relatively small percentage of that number. However, they all have to be seen.

The challenge for hospitals is reflected in national waiting times for diagnosis and for starting treatment which are all below the operational standard set by NHS England. This target is a concern for the NHS England Board, so it gets prioritized. The standard that 85% of patients should experience a maximum two-month wait from urgent GP referral to their first definitive treatment was 83.6% in Q3 2014/15. NHS England has taken this seriously and committed additional funding to the 30 Trusts with the worst performance.

I delved into the NHS data (http://www.hscic.gov.uk) and found that among rarer cancers the experience of sarcoma patients with regard to this target seemed to be within the acceptable range.

The increased referral numbers point to earlier diagnosis, which has been a target in the cancer community since 2007. It is impossible in the data to distinguish sarcoma from the whole body of data but we do know anecdotally from our sarcoma MDTs that the number of referrals has increased over the years and continues to do so.

We know that this is helped by Sarcoma UK awareness campaigns and those of a number of our MDTs who have been active in their own communities. A special credit is due to the Liverpool team who developed a distance-learning module for medical students, GPs and others wishing to know more about sarcoma. It was acredited by BMJ Learning and is available through them. Launched last May it has had over 4000 users. http://bmj.co/1bd4sVM

We can award a well done to our sarcoma MDTs. Together we are trying to raise awareness and the resulting greater pressure on diagnosis is being handled.

What challenges we may face after the election with such political uncertainty about the future of the NHS and varying degrees of commitment to the funding requirements Simon Stephens has put forward are essential, we shall have to see.

 

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.

Politicians must focus on NHS big issues

We are entering (in case you hadn’t realised it) a general election campaign. As far as the NHS is concerned it is going to be the bitterest and most tragic election campaign ever. This is the first time the NHS is being argued over without consideration of any underlying principles of any kind. At the last election the pattern was set for the future by the naked lie about not seeking any major reform. The promises offered by David Cameron in 2010 about the NHS built upon valued principles but have proved to be as shallow, short term and shabby as the failure to mention planned reform. Now it is only about money.

No-one can deny that there should be budgets and management should pay full regard to its financial obligations. But this is a public service and should be run for the benefit of the public. The balance has been twisted by short-term thinking about the politics of deficit. This has twisted almost every area of public life. Lets look at some problems in the NHS and think how politicians with a proper public interest might act.

We find that the financial deficit in about half of all Foundation Trusts is less than what they collectively spend on agency staff, mostly nurses. They need the nurses to meet their performance and safety targets. One of the problems with nurses is that they have not had a real pay review for some years so leaving and joining an agency, or going abroad, is an attractive route forward. Somewhere or other in all this there is an answer based on sensible principles which respects nurses, patients and budgets.

Another big issue is so-called bed blocking. Once upon a time local authorities ran care homes. That was stopped and it was left to market forces to provide care for the elderly. There is no centralised view of care needs, that’s left to the market. At any one time this winter there have been thousands of NHS beds occupied by people who should be in a more appropriate care environment but there are not enough care beds available. This is market failure and the public is paying through the NHS. One answer is to increase the number of publicly funded care places so that the winter peak can be handled. Blindingly obvious. The principle should be that discharge into a non-hospital place must be guaranteed at the time it is needed. Why cannot hospitals invest in care units part-funded through care charges.

The bean counters had a field day with PFI. The idea was simple. We need new hospitals so get the private sector to build them and run the buildings while the NHS occupies them and runs the healthcare service, paying a service charges for the privilege of doing so. It moved hospital construction off the government’s balance sheet and piled it onto the NHS’s annual budget. NHS hospitals now owe £80bn in PFI loan unitary charges – in other words, the ongoing costs of maintaining PFI hospitals and paying back the capital (on a formula which benefits the PFI ‘partner’). More than one NHS Trust is paying 15% of its annual budget in such charges – that’s 15% of its budget which is ring-fenced, immune from cuts or economies. PFI needs re-negotiating, if necessary through legislation.

That’s three areas where the politicians and the NHS need to do some re-thinking. Its not about a couple of hundred million here or there to massage public opinion, probably funded through some poorly identified saving which has knock on side-effects no-one has spotted yet. All these are big areas where public service core principles should apply. However no-one is bothered about core principles, they are all looking for where a pound spent can be paid for by a pound saved and, most importantly, a headline won.

Look after the principles and the pounds will appear in the system. Fail to do so and the NHS will fail.

 

NHS Future – trust innovators not profiteers

The NHS has faced some difficult moments over recent years which combined with a major reorganisation and real financial challenges create an aura of doubt over its future which the current political atmosphere is feeding on. I have just spent four weeks lying on my back. This gives some time for reflection and the hope that underneath all this doom and gloom there is more than just a glimmer of hope.

The announcement of Manchester as a quasi-autonomous region in the NHS closely followed by the naming of 29 ‘vanguard’ areas where local services will be given the freedom to create the service structures which suit their needs are being credited as the first big result of Simon Stevens arrival as Chief Executive of NHS England. This is the first dusting of common sense action at a major strategic level in the NHS for donkey’s years. If it is Simon Stevens arrival into post less than a year ago that triggered this we should cheer loudly.

It is a striking contrast with the high value but largely secretive attempts to put swathes of the NHS into private sector control. Nothing that has been announced in the last month could not have been done before the major changes which the NHS has been forced through. They all rely on innovation in the publc sector. Four years have been wasted. Or have they?  I think they have shown us some key indicators for the future.

  • the previous regime at the most senior levels was not capable of committing to such huge challenges for whatever reasons
  • the political agenda created diversions based on trivial dogma which we can now see will be disastrous if they are allowed to proceed
  • Stafford was not an isolated incident and what happened there (and in similar hospitals) is connected to that leadership issue

Lets look at that previous regime from another angle. Stafford looms large in that picture. The recent condemnation of NHS complaints handling was long overdue and still requires action. The ‘disciplinary’ actions taken against whistleblowers – many probably illegally – needs explanation. The  stories of bullying at various levels and the resulting waste of talent and opportunity that involved also need unravelling.  The sad postscript is that those whistleblowers and victims of bullying probably include many real innovators the NHS now needs.  For ten years the senior management of the NHS ignored the issues. We can suspect that it did so because that was its own management style, dictated from the top.

Whatever the truth, and no doubt someone will write it up in due course, we seem to be moving forward at long last. It may seem like four years wasted but if the political and executive arms of the NHS were frozen into incapability by the inertia they had built up and by the sheer scale of the politically driven unnecessary change they faced, revitalising them with new leadership and fresh ideas can only be beneficial.

The big issue to learn from is the foolish experiment of Hinchingbroke Hospital. We can see now that it was doomed from day one. Some people said so at the time but the evidence is now inarguable. Merging private sector management, the frontline of patient care, profit targets and the NHS financial system was never going to work.

Bringing in private sector expertise in focused areas can work, especially when you are developing a new service. The provision of PET/CT scanning in the NHS has been privatised for five years and the new ten year contract will go to one of the two previous providers. However this time the contractor will be working closely with an NHS provider, the Christie Hospital, whose role will be standards, skills and knowledge at a national level to support the provision and operation of equipment in cancer centres. It is a clean focus, few distractions. Is this a model to learn from?

The Guardian’s revelation this week that all cancer and end of life care in Staffordshire is to be outsourced to one private sector contractor looks like the lessons of Hinchingbroke are to be ignored. Front line care, quality services and profit hived off from local budgets has no ring of viability to it. By contrast the devolution of Manchester looks chaotic but such is the will to make it work in the public sector it stands a decent chance of success, though no doubt it will be a turbulent road.

So my weeks of enforced rest have arrived at two conclusions.

There are areas where some degree of privatisation will work. They need carefull analysis and planning. Front-line responsibility for patient care is not among the areas where it will work. There is a direct line betwen public money and patient care which should not be broken. I am also struck by the fact that the PET/CT contract decision involved patient representatives and that the contractor Alliance Medical is taking that message on board too.

But the second conclusion is possibly more important. Innovation in delivering NHS services is not dependent on private sector involvement. The ideas and the will are there in the local NHS, all they need is the freedom to demonstrate their viability. The 29 vanguard projects were chosen from over 260 bids, hopefully they are the first of many which will be the engine of change.

Compassion, care and a fried egg

Three weeks silence has been forced by a repeat visit of acute back problems. Spinal stenosis in the lumbar back was eased last summer by an injection at L4/5. Now the acute focus is at L3/4. The last three weeks have been dominated by morphine induced woolliness and extraordinary gymnastics to achieve simple tasks such as visiting the loo.

The comparison between ten days of hospital care and returning home to the care of my wife Sheelagh, is interesting. In hospital there is no shortage of manpower (sorry personpower) (womanpower really – should I get more PC in my thinking), to help get all these tasks done. There is also a store of equipment and good practice experience. At home the lack of resources is made up for by the familiarity of the surroundings, undistracted love and care, and the provision of food which comes high up my favoutites list. You also feel that you are working together towards a beneficial end. Even though I get “dont even think of trying that” at home, it is delivered with sympathy and the hint of possible negotiation.

There is no negotiation where Sister Helen is concerned. After some four stays on her ward in the last four years Sister Helen has got the measure of me. To be fair her team are superb and I only have praise for Ludlow Ward at the Robert Jones & Agnes Hunt Orthopaedic Hospital at Oswestry, and that includes Mo, who is every bit as formidable (and kind) as her boss. On such wonderful people is the real NHS built.

The hospital has one other call to fame. I have to admit that I have not done any research to estbalish whether RJAH is unique, the first, or one among many, but freshly cooked eggs and bacon for breakfast ! Brown or white toast, warm on the plate ? A pot of real coffee ? Yes this is a hospital breakfast which humbles many hotel breakfasts. I had my first egg and bacon with some trepidation. Long term recall of what hospitals can do to food vanished. It was hard to resist every day thereafter but I had to. The constipatory side-effects of eggs topped up the similar characteristic of morphine and other strong pain-killers. My earlier comment about extrordinary gymnastics has a deep rooted origin.

 

Love, morphine and whisky

Dr Richard Smith, the former editor of BMJ, raised a storm last week with his blog about dying. He drew broad comparisons between different pathways to death and made the statement that death from cancer can be more acceptable than a death from a lingering disease like dementia.

Maybe his wording was a bit careless and he has acknowledged that in his latest addition to the blog. He certainly attracted a large number of reactions to what he said. Most were highly critical, going way beyond the point of understanding what he was actually saying. There were intensely personal and very painful stories of death from cancer, focussing on an individual, usually in the family of the writer.

Richard was addressing an important issue – we all have to die of something. This is not something that is part of general conversation and culturally it is a topic avoided like the plague. Sudden death, or peaceful death in ones sleep, are the preferred pathways when people do talk about it. Sudden death leaves goodbyes unsaid. Dementia leaves goodbyes behind hanging meaningless in the air. Dying of cancer gives us some time, occasionally it is not very much time, to get things into order, to make our peace with everyone who matters to us, and to accept the inevitable. I liked his line about love morphine and whisky. I am still trying to decide which whisky !

We need to look at whole contexts. Science is currently driving us down a route to scavenging a few weeks and months of life at a high cost in the ambition, maybe hopeless but we don’t know that, that along the way the magic cure to cancer will be found. One of his points was that the more we spend on cancer research the more likely it is that more people will die of dementia. That is the worst death on his list of pathways to dying.

There are no easy answers, there may be no answers at all. What Richard Smith has done is, hopefully, to open the debate up a bit wider than it has been. The list of doctors doing that is growing, now we need the patients and carers clamouring to add to that debate, not with emotion, but with a considered view recognising realities, however harsh they may be.