NHS needs managed change not headline grabbing

The general election debate on the NHS is shabby. It is all about money – “our lollipop is bigger than theirs”.

Headlines are offering us a choice between David Cameron and Ed Milliband as Prime Minister, with NHS policy coloured in some way by a minority party or parties. On the one hand there will be poorly managed NHS decline, on the other repeated crisis interventions attempting to maintain a failing status quo.

The contrast between the standards which NICE and CQC demand and the ability of many hospitals to deliver them will become striking. ‘Failing’ hospitals will become common. One party will bring in the private sector, even though the Hinchingbroke experiment failed dismally. Standards may rise but services will disappear to provide the funding to do that. The other party will achieve similar results through rationalisation.

In 2007 Sir Gerry Robinson, the former CEO and Chairman of companies such as Granada TV and Compass Group, spent six months in Rotherham Hospital trying to help it become more efficient. It was covered as an Open University TV production. The experience was enlightening. Creating change was difficult, hindered by long-standing practices which benefited staff but neither patients nor the financial management of the hospital.

Patients all know about the Friday wind-down. From midday onwards hospitals prepare for the weekend. Consultants disappear. Anything which is categorised as URGENT gets left for Monday. On Friday night it goes quiet until Monday morning. Weekend ward rounds are conducted by a consultant you meet for the first time, has no idea of your condition (he doesn’t have time to read the notes), relies totally on the senior nurse accompanying him and in the hackneyed stereotype is due at the golf club before lunch. The nurses and other staff have a proper shift system.

Consultants are at the heart of patient care. The purpose of the NHS could not be met without them. They underpin everything that a hospital does but pursuit of their agendas can cause problems. Our recent experience shows that an individual consultant can distort, I would even say corrupt, effective complaint handling. They gave Gerry Robinson some tough problems. Their collective influence, left unchallenged, can create the defensive culture that Sir Robert Francis described in the Stafford report. It is insidious and unspoken. It is not even in the consciousness of the consultants themselves. Poor management cannot handle it and by being unable to challenge it, follows the path to failure

I will never deny that many (most) NHS consultants work extremely hard and the responsibility they take can be awesome. But they will each be able to identify what would make them work more effectively and in a more involving manner. They need to be engaged in change not in defending a status quo. We need to be able to tap their ability to innovate. Doing that is going to take a cohort of exceptional managers.

Gerry Robinson was interviewed after his series went out. He said “I think what the NHS needs to learn is that actually you don’t solve problems by throwing money at it, and not every problem actually needs money to solve it. That’s the first lesson. Secondly, to get out of their heads the idea that things have to take three years to do and get into the idea that there is a series of objectives that we need to do now, and that we’ve got months, not years to do it. Those two things, I think, would have the biggest single impact on the way that the Health Service is managed.

He wasn’t wrong in 2007 and he would not be wrong now. Politicians should take note. The trouble is it does not grab headlines.

How does the NHS do it? It needs to identify and recruit exceptional managers to join the NHS. That is where the private sector comes in – providing talented people who can foster and manage change. It does have some already and NHS England is headed by such a person in Simon Stephens.

Politicians should stop inventing new headlines, identify the real opportunity and foster constructive, well-managed change.

Alternative ? Complementary ? What Belle Gibson teaches us

The astonishing story of Belle Gibson is sure to spread. Belle was a ‘wellness’ blogger, author and app developer. Her brand name was The Whole Pantry. She claimed to have cured her cancer through alternative means and methods. She lives in Australia.

She is 23 and four years ago was ‘diagnosed’ by a doctor and by a healer with a brain tumour. She claims she was given 4 months to live. Journalists have tried to identify the doctor from the name that Belle gave. He doesn’t exist. The healer is an ‘expert’ in using electro-magnetic therapy to diagnose and cure. He is the user of devices which are banned in some countries. He has a reputation for being hard to believe among members of the alternative community in Australia.

Belle built a business on promoting her wellness theories, supporting them with a claim which she now publicly denies, that it cured her cancer. The Australian media are enjoying a field day. http://bit.ly/1EtJyz7 However, it doesn’t invalidate much of The Whole Pantry’s work on nutritious recipes.

So this sad story leads me logically to talk about alternative and complementary therapy. It’s a question that often crops up from new cancer patients

Alternative therapies for cancer do not work. Yes, there are claims out there but none can be verified. There are some obsessive food based approaches which may have some value but one case does not prove anything except that it worked in one case. Reproducing that obsessive behaviour is harder than people think, as well as being of questionable value.

There are also more serious dangers lurking. Laetrile (also known as amygdalin) sounds very plausible. It is well backed on the internet, although it is illegal to sell it in the UK and many other countries. One of its components is cyanide. There is at least one documented case of death caused by this drug in the published medical literature.

Complementary therapies, which take full advantage of what medical science has to offer and add something which is in the patient’s control, may have benefit. The importance of that sense of control is easy to under-estimate. Even so, care needs to be taken over unwanted side effects. The classic ones to watch for are St John’s Wort, which conflicts with many cancer therapies, and grapefruit, which uprates the activity of some cancer drugs.

On the other side of the equation some complementary therapies may have real value. These will usually also be subject to proper scientific testing although the cost of clinical trials is so steep that they may never reach that stage.

Laetrile, which I mentioned earlier, is being clinically tested and may have some clinical value. It is at a very early stage and the laboratory evidence does not point to taking it in the form which is available. Most of the work is being done in China.

On the other hand the well known anti-oxidant resveratrol is quite safe and sold as a food substance. It has been extensively tested in the lab and in clinical trials. Although its mechanism of action is not fully understood it is clear that some benefits accrue when it is used to treat cancer. One set of clinical studies was funded by the US National Cancer Institute with a UK participant, the University of Leicester’s Cancer Research unit led by Professor Will Steward, a very well respected medical oncologist. Their conclusions ? Resveratrol may have its best effect as a preventive medicine. More tests are needed.

So, do not believe headlines. Beware enthusiasts, especially those who have had an enlightening moment. Look for the involvement of science reported in peer reviewed professional journals and respect their conclusions.

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.


Cancer Peer Review – saved and empowered

Last autumn our local Cancer Care group in Shropshire had correspondence via our MP with a junior health minister about slipping cancer standards. The final letter was a bit of a wet afternoon, saying nothing we didn’t already know, and promising nothing better in performance in the future.

Then it seems the Government woke up. There came the realisation that there was a General Election looming, that cancer killed more people than anything else did, and that because just about everyone knows someone with cancer the combination of “NHS and cancer” could be quite interesting.

So some important things have happened.

It doesn’t get publicised but Cancer Peer Review has been saved. Under threat for most of the last year this simple term covers one of the most important processes in the management of cancer treatment. It provides a method by which sarcoma multi-disciplinary teams (MDTs) self-assess and make that performance data publicly available. They have to reflect and review, become self-critical, identify areas for improvement etc. In the first year of the cycle their musings are checked over and agreed (or modified) by their own Trust. In the second year they have a visit from a team of external peer reviewers, including visiting patients, who check and question. Their report is important because the survival of that MDT can depend on it.

In the world of sarcoma the MDT established at Hull has been closed down after Peer Review. The reason is that an MDT should discuss a minimum number of 100 new patients each year and their total was more like 40. The reason for the target number is to ensure that surgical experience grows. New patients are now being referred to Leeds and plans for the follow-up of existing patients have been made.

So Peer Review gave us the assurance that our MDTS met certain standards. We may argue with some of those standards (there are over 30) and wish for more. That’s not going to happen – the workload must be controlled. They will change and the number will fall.

It seems strange that a national programme of clinical peer review should ever have been under threat. We have a growing volume of up to date outcomes data from the National Cancer Information Network (NCIN) which provides unarguable information with which to correlate MDT self-assessments. It needs careful analysis and checking, sometimes it is too easy to come to an erroneous conclusion. We understand that the programme will be revising its methodology to include greater use of clinical outcomes data. I am certain there will be fewer criteria in the self-analysis as well.

To reflect this change the Cancer Peer Review team is being rebadged as the Quality Surveillance Team. Another superficial title change with which the new NHS seems to paint itself, However I welcome what lies behind it because Quality Surveillance will report to NHS England Specialist Commissioning, indicating that it will be able to generate change.

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.