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The London Cancer New Drugs Group Meeting 2008

March 2008

Introduction

January 28th, 2008, saw the second London Cancer New Drugs Group (LCNDG) meeting played out at the Novotel Hotel, London: Commissioning cancer drugs and services—shared strategies for a common goal. Due to start at 10 am, the Nobel Suite Foyer was humming with conversation before the refreshments had been laid out—the reputation of the event as one offering a useful forum in which to debate key topics in commissioning and delivery of cancer services with key service personnel unusually drawn together in one room perhaps preceding it.

The objectives of the day were ambitious:

The aim of the next two issues of Cancer Services Forum is to provide an overview of the day’s content.

 

In this issue, a brief summary of the Cancer Reform Strategy will be followed by discussion of the document from a clinician’s and a commissioner’s perspective, contributed by Dr Alison Jones (Director of Cancer Services, University College London Hospitals NHS Foundation Trust) and Mr Dominic Conlin (Director of Strategic Commissioning, Croydon Primary Care Trust), respectively. The next issue will then explore in more detail the commissioning of cancer drugs, specifically prioritisation of new treatments from a public, ethical and legal perspective. First though, a few words on the LCNDG.

Copies of the presentations are available on request. Please contact csf@succinctcomms.com

 

The London Cancer New Drugs Group

After welcoming delegates, Professor Adrian Newland opened the meeting with an introduction to the LCNDG, of which he is chair. He explained that the group exists to facilitate consistency of approach in London, by informing the managed entry of new drugs in cancer, and to promote the cost-effective and equitable provision of all medicines used in cancer management. The Cancer Reform Strategy acknowledges the LCNDG as an information source of particular relevance, which can help in making decisions about the use of new treatments where NICE guidance is not available. Recommendations developed by the group, based on clinical effectiveness, cost and likely service impact, are posted online at www.druginfozone.nhs.uk.

Professor Newland then went on to succinctly contextualise the rest of the day, by looking at the current state of play in commissioning for cancer. He noted that, since publication of the Cancer Plan (2000), spend on cancer drugs across England has almost doubled from £332 million to £560 million in 2003/04, but that there are still considerable inequalities in spend between PCTs. Furthermore, while expenditure has increased in line with funding, it remains only a small fraction of that spent nationally overall in health care (£9.9 billion in 2003/04) and well below the per capita average spent elsewhere in Europe (contributing to the explanation of the poor UK position in the European league table of overall cancer 5-year survival).

Indeed, cancer is not the dominant recipient of NHS funding—average per capita costs for the patient with cancer were £76 in 2004/05, versus £124 and £142, respectively, for cardiovascular disease and mental health. Finally, when one considers that funding for cancer pays for those drugs approved by NICE as well as those not approved and those never likely to be approved by NICE—including growth factors, anti-emetics, bisphosphonates, etc—Professor Newland’s comment that “it looks like a lot, but when you’re trying to spend it, it doesn’t seem like a lot” rings true.

With a whole raft of new molecular therapies, among others, working their way through the pharma pipeline, something needs to be done to push the cancer agenda, while bearing in mind the very real stresses that cardiovascular disease and mental health, as well as other health problems, place on the commissioning agenda.

The news was not all bad though. Inequalities in cancer services across regions and slow, or indeed, low, uptake of new and existing cancer drugs in the UK versus other European countries aside, great strides have been made in the care of patients with cancer since the Cancer Plan was published: death rates from all cancers have fallen; NHS waiting time targets for access to consultants, diagnosis and first treatment have been met; and the experience of treatment and care has significantly improved.

The question is, can the Cancer Reform Strategy and more effective commissioning strategies help to make the news ‘all good’ despite the growing numbers of patients living with and beyond cancer in our ageing population?

 

Overview of the Cancer Reform Strategy

Introduced by the Chair, Miss Cally Palmer (Chief Executive, The Royal Marsden NHS Foundation Trust), as someone who has “given us clarity, direction, achievement and improvement”, the National Cancer Director Professor Mike Richards took to the stage next and delivered an impassioned overview of the Cancer Reform Strategy for the NHS in England.

This document, he told us, is not a starting point, but represents a next step, the aim of which is to build on the progress already made in cancer over the past 12 years since the publication first of the Calman Hine report and then of the Cancer Plan. The Cancer Reform Strategy highlights key challenges and opportunities for improving outcomes and sets out a clear direction for the next 5 years—the fast pace of change precludes a longer-term outlook. Professor Richards has every confidence that the Strategy will deliver “cancer outcomes that are amongst the best in the world”, commenting that in a wealthy country with good national health-service provision, such an ambitious aim is eminently achievable. Indeed, great progress has already been made in cancer care in England over the past decade:

However, many new or increased challenges for cancer services have emerged during the years between the Cancer Plan and the new Cancer Reform Strategy. Cancer incidence is increasing as people live longer, and there are growing numbers of people living ‘beyond’ cancer. Furthermore, the opportunities for early diagnosis and effective treatment are increasing with the emergence of new technologies and drugs. Indeed, Professor Richards told the meeting that more than half of the drugs currently in pharmaceutical company pipelines are for cancer. Finally, new service models to improve convenience and outcomes for patients need to be developed and investigated.

Here, only a brief overview is provided of the Cancer Reform Strategy, which is based on six key areas for action (please follow the hyperlinks for further information if required):

Importantly, Professor Richards was keen to point out that his is not a strategy document to put on the shelf, but one to be actioned. To facilitate the implementation of the recommendations, four key drivers are described:

 

Use of information to improve quality and choice

The Strategy sets out the government’s plans for national surveys, looking at awareness of and attitudes to cancer risk factors and symptoms among different groups within society, plus further surveys of patients’ experiences of cancer treatment and care. NHS trusts and multidisciplinary teams will be required to collect defined datasets on clinical outcomes as part of a national contract. The information-gathering exercise is to be coordinated by a National Cancer Intelligence Network (NCIN), which will be established to build and maintain a quality-assured national repository of cancer data and to publish an annual report, including details of the changes to clinical outcomes and the patient experience across the country.

While Professor Richards acknowledges that there is no obligation for private healthcare providers to collect these data, he commented that subtle pressure should encourage compliance.

Provision of better information on cancer services and outcomes will enhance quality, inform commissioning and promote choice; all stakeholders from patients to healthcare providers, to commissioners stand to benefit.

Stronger commissioning

This section of the Strategy emphasises that clarity is required regarding the ‘duty’ of PCTs. 
A primary role of cancer networks will be to act as an agency on behalf of PCTs with respect to the commissioning of cancer services, and provide mechanisms through which PCTs can carry out their partnership responsibilities effectively. As part of this duty, networks will be required to maintain dialogue with clinical teams and service users and agree clinical guidelines and pathways.

A guide for cancer commissioners is currently in development, and will set out appropriate levels for the commissioning of different cancer services. In addition, an electronic commissioning toolkit will provide comparative data on cancer incidence, survival and mortality from national sources, including hospital statistics. There are also plans for changes to the Payment by Results (PbR) system, to take account of the specific requirements of cancer care.

Funding of world-class cancer care

“The government is committed to funding world-class cancer services, but also expects the NHS to deliver value for money”.

The Strategy pledges new investment to fund:

There is huge variation in spend on cancer between PCTs (Figure 1). PCTs will have the funds to implement the recommendations in the Cancer Reform Strategy, but will have to have a real focus on saving in areas of inefficiency.

 

Building for the future

Professor Richards also revealed one of his personal roles in delivering the government’s pledges on building the future of cancer care: he will be compiling a report, each year, of the progress made to date on a range of actions, e.g.:

Other long-term and short-term measures for assessing the effectiveness of the Cancer Reform Strategy over the next 5 years and beyond will also be used—for example, 1 year survival rates, 13-day mortality for surgery, peer review to assess the quality of service provision, etc.

Opinion

The document is certainly a comprehensive one with, on the face of it, a great deal of food for thought for healthcare professionals and patients as well as to researchers and industry. How it is received, however, will be critical to its implementation. Below, one clinician and one commissioner provide their views as a starter for ten.

 

A clinician’s response

Provided by Dr Alison Jones, Director of Cancer Services, University College Hospital, NHS Foundation Trust

I am a Medical Oncologist specialising in breast cancer, working both in a cancer centre and also in a cancer unit, and I was Clinical Director for Cancer Services at University College Hospital’s NHS Foundation Trust for 5 years. I am also a member of the London Cancer New Drugs Group, representing the North London Cancer Network.

I congratulate the Cancer Tsar on producing the Cancer Reform Strategy. Much of this is excellent, particularly in terms of the aspirations for patients with cancer, but as always the devil is in the detail, and my main concerns are that there will be some practical difficulties in implementation within the NHS in the current structures for cancer services, and that the areas of responsibility for implementation of different aspects of the Cancer Reform Strategy are not clearly demarcated between primary care, acute trusts and cancer centres. This may be particularly difficult in London if the proposed reform of primary care and acute trusts within the development of polyclinics is implemented. I also have concerns that there has been insufficient focus on current and future technological developments, particularly in relation to imaging and pathology, which may redefine how we treat patients with a greater focus on individualised care, which in itself would be more patient-focused, but would come at the cost of initial heavy capital investment. It is also stated in the strategy that cancer is a disease of increasing age, and with the increasing ageing population in the UK, we will have both an increase in the incidence and the prevalence of cancer in older people. The needs of elderly patients with cancer and their tolerance of treatment may, however, be very different from younger patients and, to date, clinical trials have poorly informed practice for the elderly. There is insufficient integration of cancer services and care of the elderly, which may make some of the aspirations of some of the Cancer Reform Strategy difficult.

Based on my experience in working with people with cancer, there are a number of common wishes:

Sometimes these wishes have to be looked at in the light of practical implementation. For example, patients would like a service that is both consultant-led and consultant-delivered. However, with increasing site specialisation for cancer specialists, particularly in the field of oncology, the wish for specialist care may not always be compatible with delivery of care locally.

The number of cancer specialists in the UK is lower than in most European countries, and will need to be increased. Also, it is clear that we must take cognisance of the issues of training so that we are still able to develop and deliver a high-quality cancer service in the future. Some of the issues of patient focus may be addressed by the provision of a ‘key worker’ to help provide continuity of care for individual patients.

 

 

Service structure

The pathway for an individual patient with a suspected diagnosis of cancer from the community through primary care into the appropriate diagnostic pathway and surgery and subsequently, when needed, oncology services with chemotherapy and/or radiotherapy, and possibly the provision of specialist surgery, is complex. This pathway may involve the patient moving between different providers to access different parts of their care and, even after a clear diagnosis of cancer, the treatment may need to take place in more than one hospital because of the need for specialist services. This may involve patients travelling to reach a specialist service that is located in a cancer centre. This is illustrated in a hypothetical pathway for a patient with breast cancer (Figure 1), which itself is a common cancer treated surgically in over 180 units within the UK, but which may require complex treatment for individual patients, meaning that they have to move between hospitals.

There needs to be careful consideration of these potential break points in the cancer journey so that the patient experience is as far as possible seamless, with clear transfer between different providers and avoidance of duplication of effort.

The current disposition of cancer services is focused within networks with a cancer centre and associated cancer units. We need to revisit how the components of the cancer service work within a network to ascertain how the aspirations of the Cancer Reform Strategy can be delivered. In general, the following recommendations could be made with respect to the location of treatment provision:

For optimum patient management and health service delivery, clear integration of these services is needed. There needs to be agreed pathways for referral and treatment between the service providers and agreed mechanisms for data collection and data storage to allow ready identification of a patient’s needs and date of their disease and treatment, wherever they happen to be treated, and better comparison of outcomes between sites. There needs to be a facility for linked appointments to break down any sense of isolation that may be felt by patients, and more planned coordinated investment. Oncology is a rapidly developing discipline with a strong academic focus, and it is important that the academic focus of cancer centres is developed to provide input to cancer units, so that patients benefit from the latest developments and service and access to clinical trials, and that the whole workforce is kept up-to-date. This may be helped by joint appointments, which would also facilitate continuity of care.

There are many reasons why it is difficult to implement change. These may be individual, institutional, organisational or financial. For example, Payment by Results may make the interests of an individual trust in terms of protecting income less compatible with a devolved model of care, particularly with care delivered in an ambulatory setting outside the hospital unit. Changes in service delivery may mean that highly specialised teams and individuals either need to change what they do or where they do it, and this can be difficult to facilitate within the NHS. In general, IT support is lagging behind technological development in care, and data collection has been largely overlooked.

 

Drug treatment

The decisions around providing drug treatment with chemotherapy or the newer targeted therapies are made for an individual patient within the multidisciplinary team after discussion of the case. The care is then largely delivered by the oncologist or the hormonal treatments may also be given by surgeons. Treatment decisions are made according to agreed network guidelines, which are followed within an individual hospital. These guidelines are developed by the Tumour Site-Specific Group within the network, which represents several provider hospitals, and are made according to clinical data from randomised controlled trials and also from NICE guidance. The practicality of administration of guidelines developed by a Tumour Site-Specific Group is then approved by the Network Chemotherapy Board, and then indeed also has to be approved locally. At a local level there are several hoops for a clinician to jump through to try and introduce a new drug or regimen for a patient. This would include taking part in developing the network guidelines and subsequently presenting those guidelines to the local hospital Use of Medicines Committee or Drugs and Therapeutics Committee. The guidelines may then be approved, but this does not mean that the drug can necessarily be used until a financial stream has been identified to pay for the drug. In the case of NICE-approved drugs, this is relatively easy, as patients have to receive NICE-approved drugs within 3 months of approval (however, at a local level, this may still not be straightforward). For example, a horizon-scanning exercise takes place each year to look at what is on the NICE agenda so that individual hospital trusts can plan drugs into the next year’s budget. If this has not been done or has not been done with accurate numbers or if a drug gets approved before it is expected to be approved, then it can be very difficult to identify who is going to pay for the drug and the clinician may end up filling in lots of forms to try and access approved drugs for individual patients. If a drug has not yet been approved by NICE, there is wide variability between the approaches of both individual trusts and PCTs, in relation to accessing funding, which may amount to a blanket refusal or application on an individual case basis, or application using an Exceptional Circumstance form. The latter is rarely applicable when the drug should be approved for a standard indication, but may be the only way of engaging.

We performed an audit within our own network through the multidisciplinary teams, asking the question “Would you treat a patient with a certain chemotherapy drug according to licence if the drug was freely available?” The audit indicated that patients had good access to NICE-approved drugs; however, application for funding for non-NICE-approved drugs varied considerably between trusts. The access to non-NICE-approved drugs was relatively poor; however, the appeal system to PCTs meant that approximately 33% of patients got the drug in the end.

The overall number of cytotoxic and other targeted therapies being reviewed by NICE is rising. In the 6 years between May 2000 and June 2006, NICE reviewed 23 oncology drugs, but in the subsequent period between June 2006 and October 2007—only 16 months—NICE has reviewed almost the same number of drugs again (and equals 18). The proportion of positive NICE appraisals appears to be falling, and the proportion of negative appraisals may be rising. The call by the Cancer Reform Strategy and the Department of Health for all new drugs to be appraised by NICE is helpful; however, the timeframe for this to happen needs to be compressed considerably.

It is also worth noting that developments in cancer treatment are less around conventional cytotoxic drugs, but more around targeted therapy based on the molecular characteristics of the tumour and the individual characteristics of the patient. These so-called tailored treatments are expensive, and often more costly than conventional cytotoxic drugs in terms of recouping development costs within the pharmaceutical industry, and also may require considerable investment in complex pathology to identify which patients and which cancers are most appropriate for which drugs. This was lacking as a common strategy. Although the actual costs are high, the use of treatment in subsets of patients who are likely to benefit most must be a cost-effective strategy for the future.

Conclusion

Overall, the clinical community will welcome the Cancer Reform Strategy, but would welcome even more increased funding and clear direction on practical implementation of the aspirations within it.

 

A commissioner’s response

Provided by Mr Dominic Conlin, Director of Strategic Commissioning, Croydon PCT

I am the Director of Strategic Commissioning for Croydon PCT. I welcome the scope and ambition of the Cancer Reform Strategy and, acknowledging my bias, am particularly pleased to see the focus on strengthening commissioning. The goals of commissioners are to maximise the overall health of the population, to provide the best available care driven by the evidence base, to reduce inequalities and to ensure best use of public money through informed investment decisions. I would like to explore some personal perspectives on a number of the themes in the Cancer Reform Strategy to demonstrate how commissioners’ overarching objectives are supported—and can be realised—through the Strategy.

The Tsar and his team are to be commended on the coherence of their plan with the other significant development and current policy launch from the department on World Class Commissioning. The emerging themes from this latter workstream continue to be developed, but an illustration from the pilot work within South East Coast SHA sets out the key building blocks of the commissioning cycle. It is interesting to note that many of the commissioning requirements to support and deliver on the Cancer Reform Strategy are reflected in it.

 

I particularly like the dual nature of the illustration in Figure 1 as it provides an insight into both the strategic and technical steps that underpin commissioning. Both imply the iterative and cyclical nature of commissioning and, while I have started with the needs-led, public- and patient- centred approach, that must be seen alongside the other more functional and institutional framework to reflect the multidimensional nature of health services.

There are four themes in the Cancer Reform Strategy, which I believe are of particular resonance for PCTs:

For example, screening rates in London are typically lower than the rest of the country. Drill into this analysis further and, as the Strategy’s ‘Inequalities Impact Assessment’ demonstrates, there is a stark symmetry to the lowest rates and areas of known deprivation. Similarly, while data recording on ethnic origin has been patchy, it is known that uptake on screening has been lowest in BME groups. My perspective on this is that ‘more of the same’ may address the volume issue, but, depending on the demography of your registered population, it will simply widen the inequalities gap on access and outcomes. Some strategic thought on different approaches to navigating and supporting patients to screening services would bear fruit and I see a key role for advocacy and information services alongside primary care practitioners. The end result, of course, as with a range of other conditions, is that we know that by identifying and better managing patients at risk, better outcomes are achieved and patient experience is improved.

The underpinning ten pledges for patients in the chapter frame the areas of focus, although I was most drawn to the commitments around:

 

I would urge colleagues to tap into the reservoir of expertise within user groups. There is a significant body of evidence that user design and involvement facilitates the commissioning process. To my mind, as set out in Figure 1, there is an iterative process that begins with co-design of services, including elements around culture and tone of service, and—following provision—moves through the audit of patients’ experience to identify areas for improvement and then on again through the cycle.

Commissioners will need to be creative as well as performance focused to deliver this and I wonder if the Strategy could have gone a step further in recommending the use of incentives (and penalties) to drive improvements.

Finally I would like to offer a perspective on the role that Cancer Networks might bring in supporting the effective implementation of the Strategy. As the role of commissioners broadens and, as I have reflected earlier, we subject ourselves to the same benchmarks on performance and effectiveness as we do our providers, both the outputs and the means by which we commission become important. I referred to the proposed toolkit as a means of self assessment and, similarly, PCTs use a number of national or other systems to test assurance. NICE or the Healthcare Commission would probably be the two highest profile examples.

Cancer Networks are well placed to act as the agents for commissioners. We know that this would build on the credibility and expertise developed in the successful implementation of the first Cancer Plan. Their modus operandi fits with PCT models on needs assessment, service improvement, redesign and peer review. We know that many cancer services should be planned to best effect across a larger population than that of most PCTs and it follows, therefore, that a degree of collaboration between commissioners is required.

Finally, of course, Cancer Networks should be funded by PCTs. Again it follows that PCTs would wish to use this resource as effectively and widely as possible. I would also see a role for Cancer Networks in specification, procurement and performance management, which, in my view, are the critical new competencies for commissioners.

 

Conclusion

In conclusion, the Cancer Reform Strategy builds on the effectiveness of the system now in place while capturing the key challenges facing PCTs. It places greater emphasis on primary care and the front end of the patient pathway; it requires more effective use of data by commissioners and gives an explicit focus on improving the patient experience. It also firmly establishes Cancer Networks as the commissioning agents with a core role on design, delivery and assurance.

I believe that the Strategy provides direction for commissioners to establish infrastructure and processes that—if implemented effectively—will extend access to effective treatment to millions of patients across the NHS and, through an environment that promotes equity, quality and information to support choice, will also provide a more personalised and responsive service.

Cancer prevention—over half of all cancers could be prevented

Smoking (the single largest preventable risk factor for cancer)

Obesity, diet and physical activity

Excessive alcohol consumption

Skin cancer

Vaccination

Public awareness of cancer risk factors

 

Plans for earlier diagnosis—late diagnosis is the major factor underlying poor survival rates in the UK

Improvement of cervical screening

Expansion of breast screening

Expansion of bowel cancer screening

Lung cancer screening

National Awareness and Early Diagnosis Initiative (NAEDI)

Improved understanding of delays in cancer diagnosis

 

Ensuring better treatment—surgery, radiotherapy and drug therapies are all important in the successful treatment of cancer

 

Living with and beyond cancer—patient experience has improved in recent years, but not enough

Reducing cancer inequalities—there are major inequalities in cancer incidence, uptake of services and/or outcomes according to deprivation, race, age, gender, disability, religion and sexual orientation

 

Delivering care in the most appropriate setting—localise services where possible for patient convenience; centralise where necessary to improve outcomes