North of Scotland Cancer Network: Horizon Scanning Report for NoSPG Peter Gent & Mr Peter King North of Scotland Cancer Network

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1 North of Scotland Cancer Network: Horizon Scanning Report for NoSPG Peter Gent & Mr Peter King North of Scotland Cancer Network Introduction Cancer Incidence & Projected Trends National ISD reported that just over 28,600 new cases of cancer were diagnosed in Scotland in The following summary report excludes non-melanoma skin cancers (of which there are approximately 10,000 registrations in 2008) because registration of this tumour is believed to be incomplete. For males, the most common cancers are prostate, lung and colorectal cancers, accounting for 52% of cancers in men. For females, the most common cancers are breast, lung and colorectal cancers, accounting for 56% of cancers in women. Lung cancer is still the most common cancer overall (17% of all cancers), with around 4,800 cases diagnosed across Scotland in 2008, compared to around 4,200 cases of breast cancer (15%) and 3,800 cases of colorectal cancer (13%). Males (North of Scotland approximated) Rank Approx numbers % frequency 10 year % change 1. Prostate Lung Colorectal Head& Neck Oesophagus Melanoma Stomach Non-Hodgkins Lymphoma 9. Bladder Kidney others Not available All 100% -3.8% NB: excludes non-melanoma skin cancers Females (North of Scotland approximated) Rank Approx numbers % frequency 10 year % change 1. Breast Lung Colorectal Melanoma Ovary Corpus Uteri Non-Hodgkins lymphoma 8. Pancreas Kidney Head & Neck others Not available All 100% +3.9 NB: excludes non-melanoma skin cancers Incidence is at its highest in the range, with peak incidence in both men and women in the years group. It is estimated that 1 in 3 people in Scotland will 1

2 develop some form of cancer during their lifetime, and that around 1 in 9 males and 1 in 7 females will develop some form of cancer before the age of 65. Having survived to age 65 without cancer, the risk of getting cancer subsequently is 1 in 3 for males and 1 in 4 for females. The prevalence of people living with cancer is estimated to be around 2.5% per 100,000. This data is due for updating by ISD during Cancers with high incidence along with favourable survival have the highest prevalence, in particular breast cancer; for example, 1.4% of women in Scotland are living with breast cancer. Prevalence is increasing for many cancers due to a combination of improvements in prognosis and screening techniques, as well as increasing incidence. The prevalence of cancer in the population increases with age, with 10.4% of men and 9.3% of women (10,433 and 9350 cases per 100,000 population, respectively) of people aged 65 and over living with cancer, compared to 2.3% of men and 4.4% of women aged 45-64, and 0.4% of men and 0.5% of women aged under 45. Predicted Cancer Trends The following table (1) is based upon predictions from Cancer Scenarios (2004) which attempted to quantify the predicted future burden of cancer across the population. The original Scottish figures have been adjusted to quantify the North of Scotland predictions only. Table 1: Predicted numbers of cases by cancer site (NoS) Cancer Head and neck Oesophagus Stomach Colorectal Lung Pancreas Melanoma of skin Breast Cervix Corpus uteri Ovary Prostate Testis Kidney Bladder Brain, meninges and CNS Non-Hodgkin s lymphoma Leukaemia Other and unspecified North of Scotland In the context of the North of Scotland, this equates to almost 6000 new cases of cancer per year (excluding non-melanoma skin cancers of which there are expected to be around cases), with lung, colorectal, breast and prostate accounting for the highest occurrences. 2

3 During 2008, there were 900 confirmed cases of lung cancer across the north. The trend of lung cancer is has decreased by 4% in men over the past 10 years but has continued to increase amongst women. Mortality Over 15,100 people died of cancer in Scotland in Lung cancer accounted for the largest number of deaths in both sexes, at approximately 29% of cancer deaths in males, and 26% of cancer deaths in females. The absolute numbers of lung cancer deaths in males and females have almost converged to around 2000 deaths per year in each sex, after long term trends of increasing female and decreasing male deaths from lung cancer. Colorectal, breast and prostate cancer were the other major causes of cancer deaths. Overall cancer mortality rates have decreased by 14% in males and 6% in females in the last 10 years. In men, the largest falls in mortality among the top 10 causes of death from cancer have been in stomach, lung and colorectal cancer (31%, 20% and 20% respectively). Death rates from prostate cancer, the most frequently diagnosed cancer in males in 2008 have decreased by 18% over the 10 years to The death rate from cancer of the liver has increased by 55% in men over the last 10 years, statistically significant trend. For women, the largest falls in mortality rates among the top 10 causes of death from cancer were observed in stomach and Non-Hodgkins lymphoma (36% and 27% respectively). Death rates from breast cancer, the most frequently diagnosed cancer in females, have decreased by almost 17% over the last 10 years, in spite of the increase in incidence of female breast cancer. Cervical cancer deaths have decreased by 19% over the same time period, in keeping with a longer term trend. National Workplan Priorities Screening There are presently population-based screening programmes for cervical, breast and colorectal cancer. Uptake of breast and cervical screening is considered good however colorectal screening is comparatively low at around 50%. There are trials underway to try and assess the benefits to screening in lung cancer which may impact on future service delivery. Presently, the majority of lung cancer presentations are of late stage and curative treatment is limited to a small percentage (around 10% presenting at stages 1-3a, with 1 year survival being in the order of 81%, with 3 year survival being 30% based upon a national registration based audit of 11,300 cases). A US based study involving years age range (all previous smokers) reported a 20% reduction in deaths amongst those screened with low dose CT v standard CXR. With this in mind, it is reasonable to consider the role of lung cancer screening within the Scottish population where we already know late presentation to be a major problem and comparatively low surgical intervention due to the proportion of late stage presenters. There is presently a National Breast Screening Services review, commenced in 2011 and due to report in The review is the first time the Scottish Breast Screening Programme has been reviewed. At this stage it is not clear what the review will deliver but it is reasonable to suggest that any review findings will likely have an 3

4 impact upon NoS based services and for horizon scanning purposes, the review should be kept in mind. Early detection The Scottish Government are currently consulting on a forthcoming investment programme 30m circa, targeted to improving earlier detection of cancers broadly. There are proposed sub-streams of work focusing on the most common cancers and working groups are being organised to take the proposed programme forward. Consistently, late presentation is attributed for Scotland s comparatively poor survival performance when compared with other European countries (EUROCARE database). In most cases, earlier detection is likely to have a profound impact upon existing services which may require considerable levels of investment and redesign to achieve the anticipated levels of improvement. An example of this is colorectal cancer which has been subject to significant review by the Chair of the NoS Colorectal MCN. NHS Grampian based data for 2010/11 found that 5000 lower GI endoscopies where performed to diagnose 230 cancers. Diagnosing more cancers earlier would therefore impact considerably on such services and add to existing challenges and limitations to meet increased activity. From a horizon scanning perspective, it is reasonable to believe that over the next few years the Government emphasis (and investment) is going to be around improving earlier detection and that Boards will require to assess the local impacts of this. Areas for consideration include: Targeted health promotion/education and propaganda Assessment of locally available diagnostic services and the wider impact upon primary care generally to screen out patients, on the basis that more will be encouraged to present early Assessment of existing capacity to cope with increased demand for both diagnostic and treatment of suspected cancer and the likely impact should x amount more cases may be referred onward as a result of more presentations within primary care Consideration of alternative models and systems for supporting earlier detection e.g. new targets for health checks, changing roles of the multi-professional teams, alternative ways of providing clinics and consultations, alternative diagnostic methods, formalising clinical consensus to support change, collaborating with key 3 rd party organisations to promote healthier living and early presentation and consideration of Island s and more remote based services and how they might require considerable support. From an Island s perspective, early detection may also impact upon patient travel, with more patients having to leave the Islands for diagnostic and treatment services and whether there might be an opportunity to anticipate some of this in advance. Could it be minimised? What additional training and support might be required for the Island s? Might there be an opportunity to increase activity on the existing CT scanners located in Shetland & Western Isles? In addition to local Board assessments, there might be an opportunity for some wider collaboration at regional level. The Island Boards already depend upon the mainland services for substantial cancer service support but might NHSH, NHSG & NHST find 4

5 new opportunities to support each other e.g. new screening pilots, joint radiology investments? Interventions For the most, a suspicion of cancer results in being given the all clear, however timely management of these cases is as important to those who are found to have a cancer. From multiple public and patient based reviews, waiting is the most concerning aspect. Any increases in activity will also require improvements to how we communicate with patients and members public. This is not just pertinent for intervention but also earlier in the pathway when tests or appointments are awaited. Supporting this will be multi-factorial, including sharper and more timely written and oral communication. Surgery is the most effective method for curing cancer and offers the majority of cases the best chance of long-term survival / disease free survival. Existing competing pressures across the services and Boards now mean that any additional increase in activity is likely to add complexity to surgery services, particularly if more cases present earlier as per national strategy. Factors to consider: Local Board assessment of theatre and surgical service capacity Availability of workforce professionals and service infrastructure Not clear whether the pending 30m will support treatment phase investments and therefore what the local Board budgetary position are to support any increases in capital and revenue investments might be The potential impact upon non-cancer workload and the sustainability of competing service demands and pressures Whether some surgical services will be sustainable within current delivery models and whether some services might be better delivered on a regional basis over the next 3-5 years (for a range of reasons including clinical governance, infrastructure, availability of expertise and evidence of patient outcomes) Emerging technologies e.g. robotic surgery and how new surgical techniques are introduced into services in future, either national, regional or local Oncology Services have significantly increased over the past years particularly and the increasing incidence will further impact upon services. Not only has activity increased significantly but the complexity and range of treatments has been hugely significant. The amount of chemotherapy being given has increased fourfold over the past 15 years and many patients with incurable disease are living longer to receive multiple lines of treatment. Oncology has been subject to considerable research activity and services within the north have a proud involvement in this, recognised the world over. The budgetary impact however has matched the rapid growth in improvements and service demand, with around 30m being spent each year across the three NoS cancer centres in support of oncology (including heamato-oncology) drugs. The next 3-5 years will continue to provide significant challenges and some new opportunities including: The associated costs of new and more complex anti-systemic cancer agents i.e. the new bread of targeted therapies such as Herceptin, Glivec, Rituximab, Cituximab, Erlotinib etc. 5

6 Comparative policy differences as a consequence of the Cancer Drug Fund being available to patients in England. Although SMC continues to approve new treatments within Scotland, it is now possible for patients in England to receive funding for non-nice approved treatments thereby creating significant potential policy conflicts on how cancer is managed UK wide. NoS already has a working group scoping out more cost-effective methods for controlling the spiralling drug costs. The three cancer centres will be encouraged to consider future opportunities for regional and national procurement. Additionally, capitalising on VAT savings associated with home / primary care based delivery compared with secondary care (potential savings to NHS Boards in the region of 1.5m based on current treatments) Assuring clinical consistency of prescribing and application of CEL 17 advice around availability of medicines. Predicting future capacity requirements and scoping out new opportunities to deliver treatments as close to patients homes as possible. Potential opportunities to make existing services more sustainable in future through new networks of care (particularly beneficial to smaller services). This would require considerable agreement at clinical level and regional Board support but could strengthen existing services and provide future contingency. Regional consideration of the Radiotherapy In Scotland Report (2010) which has been endorsed by the Scottish Radiotherapy Advisory Group and gives predictions as to future Linac and workforce requirements, including relevant planning equipment etc. Overall, the north has invested considerably in these services since the first tranche of cancer monies was released in 2001, followed by further releases of cancer specific funding. Collectively, the three Nos cancer centres account for around 25% of the countries activity and the demand for these services is set to continue. The technology developments in chemotherapy are being matched in radiotherapy with more complex but safer equipment being developed, for which there is a national procurement scheme in place. Workforces are scaled differently across the three centres and matching future demand will require a match in workforce. There are opportunities for more joint working but there is also a need for improvements in the facilities. NHSG is well down the road with plans for a new Linac centre with work underway and a new inpatient facility which will be ready by 2012/13. NHST are developing plans for new facilities for inpatient and chemotherapy services. Issues to consider: High public expectation and increasing choices for treatment The emerging potential for policy conflict in respect of cancer treatment availability across the UK Requirement for improvements to some existing clinical facilities and how these are prioritised and supported The availability of workforce to sustain services and any increases in demand and whether more should be done to develop new networks of care / joint working at this stage How strong is the appetite across the Boards to work more closely in managing the impact of current and future rising costs 6

7 How the North continues to sustain and where possible improve upon the excellent levels of care already provided across the three centres Follow-up This is an area of emerging importance. As the numbers of patients presenting and being treated with cancer swells, so are the numbers being followed up post treatment. The evidence base to support follow-up is unclear however it is currently and will continue to impact significantly upon clinic activity and is considered by many as an area of in-efficiency. Increasingly, this is becoming a matter of national priority and creating space for new referrals to be seen may be managed in part through reducing the numbers being followed-up. It is very difficult from international literature to find consensus on follow-up. In breast cancer for example, around 80% of recurrent cancers are self-detected outwith scheduled appointment periods. For other cancers, the purpose is follow-up is poorly understood though there is increasing argument to follow up those for whom there is high-risk for a range of clinical reasons, or if they are part of clinical trials or long-term effects surveillance. As part of a horizon scanning exercise, follow-up is a potential area to develop further. Things to consider would include: Whether consensus for follow-up is best managed locally, regionally or nationally The current and future impact upon such as radiology services and the potential to manage future increases in demand Whether for some tumour groups risk stratification models could be developed Re-assigning follow-up to other members of the professional team and opportunities to reduce secondary care burden. Where possible, considerably reducing follow-up or opening local / regional trials amongst selected groups to try and build local confidence around the potential areas for change. Across the UK some services have gone as far as stopping routine follow and in such as breast cancer, reducing it to 1 year compared with other areas where it can be up to 10 years. Taking this forward might be a very appropriate priority for the tumour specific MCN s though it might be worth considering whether a national approach would work better (or not). Key Support Services Underpinning all services are such as pathology, cytogenetics, radiology and research. The north has a proud position with regards to research especially and through Prof Alastair Thompson and Dr Marianne Nicolson (the Cancer Network Research Chairs covering the north Boards), there is strong emphasis on research driven care. There are national targets for clinical trials uptake and through the Chairs and their clinical colleagues across services, the north is well placed. It does however require investment and ongoing support and over the horizon scanning period, understanding the emerging treatments will be very important. In terms of Pathology and Radiology, the increasing emphasis on personalised cancer management whereby the key characteristics of tumours are understood within individual patients is the key future driver for successful management. Being 7

8 able to target tumours with treatments known to work in specific cases is the science behind modern oncology. They are also the services who diagnose cancer and therefore are vitally important for ensuring that those who treat cancer know exactly what the cancer is. Consistently however these professional groups have been subject to sustainability and workforce shortage issues. Factors to consider: Current and future predicted service demand activity and how well placed services are to meet these Potential for working more collaboratively and working together through such as the Scottish Pathology Network to propose solutions on such as sustainability Particular problems with specialist small volume tumours and current system delays where service rely upon only one or two individuals The potential investment opportunities for these key services areas arising through the pending 30m detecting cancer early programme and how this is coordinated i.e. in Board or regionally or both Regional Summary Cancer is a major health threat to the population. The chance of developing cancer is high, particularly as we live longer and the ongoing impact of particular lifestyle and risk factors e.g. smoking, obesity and alcohol consumption etc. This report includes evidence of predicted future incidence and examples of national strategy for improving the burden of cancer. The Scottish Government have outlined new funding for the earlier detection of cancer though the efforts to reduce future incidence in particular high-risk areas will be a long-term achievement. Over the next 3-5 years the NoS Boards face a range of challenges, not least financial, and managing current and future rises in cancer incidence will require ongoing support and investment, set against other competing pressures and service demands. Integral to the horizon scanning exercise will be assigning responsibilities. By this, could more be done and will need to be done in future at regional level to help sustain services and what new opportunities may emerge at local and regional levels to creatively redesign services, particularly where funding might be available, in order to match the aspirations of the Scottish Government strategic workplan for cancer. Central to improving the burden of cancer will be: Consistent approach to healthier living messages Investment and support to diagnostic and treatment services Ongoing support and investment for research Consideration of new procurement models for expensive treatments and opportunities to off-set rising costs e.g. VAT savings Consideration of new models of early detection and involvement of primary care services to support these 8

9 Be more flexible in how clinical networks and Boards work cross boundaries to deliver patient care, particularly where there are sustainability or specialist requirements to consider this Be cognisant of the needs of patients and healthcare staff living and working in remote locations and how modern care is consistently made available throughout Having access to systems for producing high quality clinical audit information that will help inform more specifically the areas for service improvement Listening more closely to the experiences of patients it is often the small things that make the difference to patients and we must support clinicians in their efforts to deliver these more effectively This report is quite long but falls short of the full range of issues that require consideration. Peter Gent & Mr Peter King North of Scotland Cancer Network July/Aug