Twenty years on from Calman Hine …

four covers
The new Cancer Strategy is a remarkable piece of work for its breadth and depth of detailing. This could, and deserves to be, as far reaching and valuable in terms of patient benefit as the Cancer Plan of 2000. If you look back to Calman Hine in 1995, through the Cancer Plan, then the 2007 Cancer Reform Strategy you get documents from very different times in the evolution of cancer care all of which help provide the foundations for the new Strategy. The 2011 Cancer Outcomes Strategy is probably best forgotten as rooted in post-election political nonsense.

The important thing about this plan is that it is grounded in well researched and understood realities. It is do-able and it can shift the quality of care upwards as well as handle the growing numbers of patients. The 2000 Cancer Plan had some lofty ambitions; the 2007 CRS trod into unfamiliar territory; this is going to put real buildings on the secure foundations these two pieces of work created.

The six headline priorities map out clearly some key targets and the Government cannot ignore the value that these offer.
A radical upgrade in prevention and public health. Smoking and obesity are the high prioritiy targets.
A national ambition to achieve earlier diagnosis. The ambition set out is that, by 2020, 95 per cent of patients referred for testing by a GP are definitively diagnosed with cancer, or
cancer is ruled out, and that patients get this result within four weeks.
Patient experience on a par with clinical effectiveness and safety. Improving the use of IT, making CNS more accessible, and making the National Cancer Patient Experience Survey an annual event.
Transformation in support for people living with and beyond cancer. By 2020 every person
with cancer should have a comprehensive plan that outlines treatment as well as post-treatment support and care. CCGs must commission appropriate End of Life care, in accordance with NICE guidelines and the Choice Review.
Investment to deliver a modern high-quality service. A plan for radiotherapy machines (linacs) covering upgrading and replacement. A permanent and sustainable model for the Cancer Drugs Fund. A national molecular diagnostics service to guide more personalised prevention, screening and treatment. Plans to address critical deficits in the cancer workforce.
Overhauled processes for commissioning, accountability and provision. Most treatment to be commissioned at population sizes above CCG level. By 2016, a network of Cancer Alliances should be established across the country to address service variation and support redesign.

I really like the way that the three strands of what was unfamiliar territory in 2007 now come together as key elements in the Strategy – early diagnosis, data and information, and survivorship. In 2007 we felt we were being bold tackling three completely new strands of of activity. NAEDI, NCIN and the National Cancer Survivorship Initiative all broke new ground and have achieved so much in seven years that their work is being embedded and taken further in the new Strategy.

The treatment chapters are probably the areas where most interest will be shown. Here the big hidden issues about workforce come to the fore strongly – not enough oncologists, radiologists, radiographers, CNS etc and a complete absence (until now) of any meaningful national workforce planning. The importance of new investment in linacs is something we have seen before and will, if there is continuing absence of planning, see again. These two areas are perhaps a shattering condemnation of the last five years – the absence of planning, the slow but obvious decay of service standards and the long term potential for patient harm. By contrast the big headline issue, high cost drugs, can be glossed over. The call for the Cancer Drugs Fund policy review to come up with a sustainable answer to the problem will resonate with NHS England.

At a personal level I am delighted at the new emphasis on palliative care and end of life care. I have long believed that palliative care and oncology practice were not separate disciplines and that this should be recognised clinically. It is in the strategy. Similarly those of us that work with local support groups will be aware that end of life care is far from integrated. It is usually community based, with lack of clear leadership, multiple provider agencies, leaving patients feeling as though they have been dumped. The message is about getting acts together.

For patients perhaps most striking priority is the call to be heard, to be supported through the NHS jungle, and to be given results as of rightn rather than when it is convenient. There is a strong emphases on research, other patient reported measures, and patient involvement. With CQC getting stronger in the regulatory mix (and a friend of cancer patients influential in this) plus the restoration of Peer Review, albeit with a new name, patients will have watchful allies as well. Stratified medicine is another patient friendly development. The full implications are not yet understood so the need for focus on the opportunity and being flexible to explore it is the message.

Talking of restoration. A National Cancer Team! Cancer Alliances! What a damning statement about the NHS reconstruction started by Andrew Lansley and continued by Jeremy Hunt. The National Cancer Action Team and Cancer Networks were only disbanded in 2013. The fact that they need reinventing barely two years later confirms it as the mistake many said it was at the time.

The Independent Taskforce, chaired by Harpal Kumar CEO of Cancer Research UK, should be congratulated on a remarkable piece of work. It was all done in six months, there was wide consultation,evidence was sought and analysed. The work is detailed and considered. If only every policy had this kind of report behind it.

Quality Standard sets new challenges

The publication of the Quality Standard for Sarcoma by NICE open up a new set of dialogues in how to improve the standards of sarcoma care in England and Wales. The NICE standing committee on quality recruited six members of the sarcoma community to advise it and to be part of the decision structure during the development of the standards so, hopefully, they are rooted in the realities of daily provision of care and treatment. The standards can be found at:

The first standard calls for clear pathways in diagnosis. This is something for the wider NHS to develop, informed and supported by sarcoma MDTs. There was discussion about the value of local diagnostic services and a real example of development work from Yorkshire where DGH ultrasound operators play an important part in the diagnostic pathway. Other areas are also making important steps in improving GP awareness, for example. The hope is that other commissioners and NHS managers will look at how local services can develop, working with their local sarcoma MDT.

The second standard re-affirms the requirement in the NICE IOG that all sarcomas should be treated in consultation with a sarcoma MDT. It does it however in slightly different terms and gives a Sarcoma Advisory Group (the local oversight group in the NHS) the power to determine which treatments for which groups of patients can be managed outside a sarcoma MDT. In the case of children, for example, the decisions will be easy because the current systems work well. In the case of gynaecological sarcomas those in the gynae community who are reluctant to refer their patients (often until it is too late for any benefit to be gained) can be brought into line (we hope).

Statement number three is an important one for the development of the sarcoma treatment network. Sarcoma MDTs must make public their skills and the pathways they observe. Clearly this will be valuable information for patients. It should become obvious that having a multitude of different sarcoma oncologists in different locations all treating a few gynae patients (for example) is not a proper way forward. Every MDT will need to decide what it handles and what it refers on and to whom – very much in the same way that they may diagnose a bone tumour but pass it on to one of the recognized bone centres. I hope we will see development of regional experts in some areas, giving one centre a critical mass on which to develop a specific expertise. This can only help patients in the longer term. It might also be good for some careers. It is important that MDTs recognise their strengths and where they may be weaker and do not try to maintain a “we can do everything” stance. The NHS England Sarcoma CRG will have a role here, alongside SAGs.

The next statement can be linked to the previous one. Retroperitoneal sarcoma patients have their best chance of survival with radical surgery at the first intervention. There is currently a trial underway to see whether radiotherapy may improve that. There have been too many patients treated conservatively, followed by recurrence and decline. Data from international series also show that high volume centres which can develop expertise, offer real benefit. The NICE rules forbade the quality standard from being specific about this but the Quality Statement is an open invitation to professional associations, the NHS England Sarcoma CRG and to commissioners to put in place structures which meet the Quality Standard and improve outcomes.

Statement number five recognises that there may be unplanned resections of sarcomas but once diagnosed patients must be referred for treatment to a sarcoma MDT. Most limb/trunk tumours will be diagnosed and treated by a surgeon who is a core member of an MDT but in other anatonical sites it is not enough for a diagnosis to be made and surgery to go ahead locally. The sarcoma MDT must be brought in to discuss the treatment plan (Statement 2) and for planned surgery in the anatomical specialty the sarcoma MDT must nominate the surgeon as an extended member of the MDT.

The final statement makes it a requirement that there is a nominated key worker for every sarcoma patient. This includes patients whose care and treatment is co-ordinated through a site MDT (such as Upper GI or Gynae). It makes it an imperative that in agreeing that a site MDT can look after a patient this statement is observed by the site MDT. There is also the implication that a single person in a sarcoma MDT is not adequate for this role. Illness, holidays, training all take people away from their duties and it is essential that patients do not lose this kind of contact. So trained cover is a minimum requirement.

At first sight these standards look quite gentle. Close examination shows that there are some big nitty-gritty issues hidden in them, as I am sure you can see, and it will be something of a challenge to attitudes and behaviour to make this work. The sarcoma network in England has been slowly coming together and with the BSG now properly constituted and ready to take some actions and decisions, together with a Sarcoma CRG which is clinically led and has a role with commissioners, we have a structure which could initiate action and deliver new benefit to patients.

Early diagnosis – shame about the politics

Some people might suggest that its unfair to say this but the timing of the NHS England announcement of a cancer early diagnosis initiative, while welcome, has all the markings of being politically driven.

In 2007 the Cancer Reform Strategy announced NAEDI – the National Awareness and Early Diagnosis Initiative. After the change of government the group kept meeting, Cancer Research UK kept putting up funding for research into practical issues and Macmillan did its best to make people aware of the importance of early diagnosis.

The new government picked off some headlines but otherwise did nothing for over four years.

Now its election time again and guess what – new money, new priorities, new targets. This time though the government has nothing to do with it. Of course its all in the hands of the (quasi)-autonomous NHS England. Who are they kidding?

However it is very welcome.

One person deserves the greatest credit that we can give for getting it this far. Harpal Kumar is the CEO of Cancer Research UK. His personal commitment to creating change on this issue is undoubted. It dates from 2007 when Prof Sir Mike Richards asked him to chair NAEDI and he has seen it through to today. He continues in charge, it is in safe hands, things will happen.

Thank you Harpal.