Macmillan Cancer Partnership in Nottinghamshire
The Macmillan Cancer Partnership in Nottinghamshire is a pioneering programme which aims to improve local cancer services and address the growing number of people surviving and living with and beyond a cancer diagnosis. This three million pound cancer improvement programme aims to radically transform cancer care across Nottinghamshire. The partnership Comprises of Nottinghamshire health and social care services, Macmillan and other local voluntary organisations. The programme includes 14 individual projects and pilots all aimed at testing, improving and developing new ways to support people affected by cancer, the projects are set up to deliver the following overarching themes:
1. Prevention and diagnosis,
2. Treatment and recovery
3. Living with and beyond cancer
4. End of Life Care
Full details of the Macmillan Cancer Partnership and details of all of the projects can be accessed: http://www.macmillan.org.uk/Aboutus/Healthandsocialcareprofessionals/Macmillansprogrammesandservices/MacmillanCancerPartnershipinNottingham.aspx
Nottingham City Clinical Commissioning Group
Nottingham City CCG is working to improve Primary Care access to diagnostic testing, working with communities to identify barriers to screening, supporting the City Council in health promotion activities, commissioning better acute cancer services including discharge from care, implementing the survivorship agenda by incorporating cancer into the remit of the Care Delivery Groups, and enabling greater access to end of life care and support, The main projects include:
An audit of cancer diagnoses in primary care to identify best practice and areas for improvement
Recruitment of 2 Macmillan GPs and a Project Manager who will build the capacity of practices and local people to support members of their local community to recognise the early symptoms of cancer so that they present earlier to their GPs where they suspect they have cancer symptoms
A research project designed to identify barriers to bowel screening in BME communities
Tumour site pathway development focussing on treatment follow up and survivorship linking with Care Delivery Groups
Implementation of the Electronic Palliative Care Coordination scheme across Nottinghamshire.
Nottingham City Council Neighbourhood Locality Teams
A programme of work is being undertaken to ensure cancer is a priority at a local level and features in neighbourhood ward plans. This is being achieved through partnership working with key stakeholders to include McMillian, CCG public health and NCC neighbourhood teams.
The BME Cancer Network
The BME cancer Network is a social enterprise which aims to address cancer inequalities within black and minority ethnic (BME) and low income communities. One of the enterprise’s most recent reports (Hear Me Now 2013) highlights the greater incidence and mortality due to the 30% increased risk of prostate cancer in black African-Caribbean men. The Network is working with the CCG and other partners to raise awareness among professionals and in the community and to promote early identification and diagnosis of prostate cancer and to provide on-going support to those affected by the disease.
The Hear me Now reports can be assessed at:
Friends and Bredrins (FAB)
FAB is a self-help group for black men (but not exclusively) who have, or have experienced, cancer and for those who have been recently diagnosed. FAB offers a chance to share experience and advice, to combat isolation, whilst providing emotional support for those who have had a traumatic experience. The group has professional links with the Urology department at the Nottingham University Hospitals NHS Trust, and with BME Cancer Communities. Further information is available at: http://www.nottshelpyourself.org.uk/kb5/nottinghamshire/directory/service.page?id=DU5d_PjBKi0
Prevention and Early Diagnosis
See relevant JSNA chapters for smoking, obesity, alcohol, diet and nutrition and physical activity.
Change Maker Volunteer Programme
Change Makers are local people who volunteer in their community to raise awareness of the signs and symptoms of the four most common cancers in Nottingham City, lung bowel, breast and prostate, with the aim of increasing early presentation, reducing late diagnosis, increasing access to screening and addressing health inequalities. The Change Makers utilise an innovative approach to working with the City’s most deprived communities through empowering local people and developing solutions to overcome health issues and challenges. One of the most successful approaches of the programme is the use of drama to deliver health messages around the signs and symptoms of cancer to people from diverse cultural and religious backgrounds from across Nottingham. In April 2015 the Change Makers established as an independent group and are being hosted by an established local voluntary/community sector organisation that is providing support to the group to become fully independent and self-governing. (NCC Summary of the Change Maker programme 2013)
Public Health England Be Clear on Cancer Campaigns
Be Clear on Cancer is an overarching campaign aimed at raising awareness of the signs and symptoms of cancer and prompting those with relevant symptoms to visit their doctor. It is run by Public Health England in partnership with Cancer Research UK
The national campaigns are evaluated to understand awareness of cancer advertising and symptoms, beliefs and attitudes towards cancer and early diagnosis and knowledge and recognition of the relevant campaign material. The following graphic from Cancer Research UK (2014) provides a snapshot of the impact of the campaigns.
Figure 3.1 Evaluation of Be Clear on Cancer campaigns
Cancer Research UK (2014) available at
Figure 3.1 illustrates the campaigns have been associated with improved awareness; GP attendance and 2 week wait referrals. In Nottingham work is on-going to ensure a local response to link up with and enhance the campaigns through displaying campaign resources in GP practices, pharmacies, leisure centres, libraries and community centres. While this approach has been useful in raising the profile of the campaigns within target groups, the CCG are working with Macmillan and other key stakeholders to develop local health improvement programmes and associated communications and social marketing messages to make explicit the link between prevention factors, cancer risk and the importance of screening.
Cancer screening is a process of identifying apparently healthy people who may be at increased risk of the disease, to detect if there are any early physiological changes which match with recognised signs of a cancer growth. The DH report ‘Improving Outcomes: A Strategy for Cancer recognised that cancer screening was an important way to detect cancer early. Over 5% of all cancers are currently diagnosed via screening.
The NHS has three national cancer screening programmes, breast, cervical and bowel. The sections below seek to highlight the populations who are not attending for screening services and opportunities.
The NHS Breast Screening Programme invites women aged 50–70 years for screening every three years, although there is a phased roll out currently underway to extend this from age 47 to 73. A third of breast cancers are now diagnosed through screening (NCIN 2009).
Figure 3.2 shows breast screening uptake in Nottingham City is slightly lower than the national average (70.4% compared to 72.2%) and just exceeds the national standard of 70% coverage. Sixteen of the 61 practices (in 2014) had uptake rates significantly lower than the England average with uptake ranging from 53.9% to 66.2%.
Fig 3.2 The percentage of women in the population eligible for breast screening who were screened adequately within the previous three years on 31 March
Females, 50-70, screened for breast cancer in last 36 months (3 year coverage, %).
Source: General Practice Cancer Profiles, Cancer Commissioning Toolkit, National Cancer Intelligence Network, 2015.
Cervical screening in England is offered every three years to women aged 25 to 49 years and every five years to women aged between 50 and 64. Cervical screening takes a sample of cells from a woman’s cervix for analysis and aims to detect abnormal cells which can be treated before they become cancerous. Regular screening all women, conditions which might otherwise develop into invasive cancer can be identified and treated. Early detection and treatment can prevent around 75% of cervical cancers.
Figure 2.12 shows uptake rates in Nottingham are very similar to the national rate. Uptake in 2014 was slightly higher than the national figure (74.6% compared to 74.3%). Fifteen practices had significantly lower uptake than the national average, ranging from 52.2% to 72.0%. However, this does show that approximately a fifth of the eligible women are not taking up their screening appointments. Both the national and local rates exhibit a slight decline in overall coverage. There is a decreasing trend in coverage nationally; particularly in younger women aged 25-49.
Figure 2.12 The percentage of women in the population eligible for cervical screening who were screened adequately within the previous 3.5 years or 5.5 years, according to age (3.5 years for women aged 25-49 and 5.5 years for women aged 50-64) on 31 March
Females, 25-64, attending cervical screening within target period (3.5 or 5.5 year coverage, %) Source: General Practice Cancer Profiles, Cancer Commissioning Toolkit, National Cancer Intelligence Network, 2015.
Bowel cancer screening is offered to men and women aged between 60 and 69 on a 3 yearly basis. Bowel cancer screening can also detect polyps. These small growths in the bowel wall are not cancers, but may develop into cancers over time. Once polyps are detected they can easily be removed thus reducing the risk of bowel cancer developing.
Bowel cancer screening is the most recent addition to the national cancer screening programmes. The programme commenced in 2008 and offered screening to all people aged 60-69. Now bowel screening is being extended nationally to offer two additional rounds of screening and to include those up to age 73, and those at 57 years. Regular bowel cancer screening has been shown to reduce the risk of dying from bowel cancer by 16 per cent (DOH, 2011).
Uptake of bowel cancer screening is lower in Nottingham City compared to national uptake rates and like England, this has levelled off over the last 2 years. Nineteen practices have significantly lower uptake than the national average, with uptake ranging from 35% to 49% in these practices. These figures suggest that half the people eligible for screening are not accessing the service.
Figure 2.13 The percentage of adults in the resident population eligible for bowel screening who were screened adequately within the previous three years on 31 March
Persons, 60-69, screened for bowel cancer in last 30 months (2.5 year coverage, %)
Source: General Practice Cancer Profiles, Cancer Commissioning Toolkit, National Cancer Intelligence Network, 2015
Increasing the uptake of bowel cancer screening is a priority for Nottingham City. The CCG has invested additional resources to tackle the issue at a local level and is working with a range of partners to improve uptake across the city, projects include:
Bowel Cancer Screening Recall Project – ACE Project
The CCG, with endorsement from the GP Executive Team, has commissioned the Clinical Assessment Service to send a standardised follow up letter to patients who have received their first invitation to bowel cancer screening and not returned their test within 3 months. This letter will be sent on practice headed paper with their GP’s electronic signature so that it appears to come from the practice but by using the CAS reduces the extra administrative burden on the practice.
Bowel Cancer Screening – Replacement kit fax – ACE Project
In March 2014 GPs were invited to use a new process to improve uptake of the Bowel Cancer Screening Programme which allows GPs and Practice Nurses to order replacement Bowel Screening kits on behalf of patients via fax. Practices seen a small improvement in uptake but more importantly, 4 patients who had repeatedly declined previous screening invites, went on to complete the test and an abnormal result was detected. These patients do not have cancer but are now under surveillance at NUH.
Macmillan early diagnosis programme
Nottingham City CCG successfully bid for Macmillan funding a Project Manager/Macmillan community champions to improve early diagnosis. The aim of the project is to build the capacity of local people to support members of their local community through provision of appropriate and accessible information and education to enable individuals to recognise the early symptoms of cancer so that they present earlier to their GPs where they suspect they have cancer symptoms. In 2015/16 the project will focus on improving the uptake of bowel cancer screening to improve the numbers of bowel cancers diagnosed at stage one and two.
Late diagnosis of cancer is recognised as a major cause of the UK’s relatively poor survival rates for many forms of cancer, compared with the best performing areas of the world (DOH, 2011). Local evidence shows that people in Nottingham have low levels of knowledge about the signs and symptoms of cancer and would tend to delay seeking medical help, even if they suspected that they may have a life-threatening health problem (NTU bowel cancer research project). This echoes findings in other parts of the UK, where lack of knowledge and fatalistic views on the prognosis of cancer feed into late stage at diagnosis.
2.4 Routes to diagnosis
An early diagnosis of cancer facilitates better cancer outcomes, as more treatment options are likely to be available, and the cancer tumour will be ‘in situ’ still, enabling highly targeted treatments. Targeted and early treatments usually result in fewer long term side effects. Improving outcomes, a strategy for cancer (2011) and the NHS 5 Year Forward View have set a clear national goal about improving early diagnosis.
Flexible sigmoidoscopy (flexi-sig) screening
The NHS introduce flexible sigmoidoscopy (flexi-sig) screening for all men and women when they reach the age of 55 and is a way of looking at the inside of the bowel using an endoscope (a thin flexible tube that is put into the rectum/back passage and guided around the lower part of the bowel) to detect bowel polyps and cancers early before any symptoms develop. Flexi –sig was introduced in Nottingham in February 2015 and is running successfully, there are plans to increase list size and expand the service in 2016.
Diagnosis at emergency presentation
Figure 2.14 shows across all cancers and all age groups, around 22% of cancers are diagnosed at emergency presentation (2006-2013). Emergency presentation increases with age, accounting for 41% of cancers in people over 84 years. Emergency presentation may be higher in more deprived areas with 27% diagnosed by this route in the most deprived areas compared to 18% in the most affluent. The proportion of emergency presentation is similar across ethnic groups, ranging from 20% in Mixed Heritage and Chinese populations to 24% in ‘Other Ethnic Group’ but the differences were not significant (Routes to Diagnosis, 2006-2013, NCIN, 2015
Figure 2.14 Emergency presentation of cancer in different demographic groups in England 2006-2013
Source: Health and Social Care Information Centre Indicator Portal
The proportion of cancers diagnosed after emergency presentation varies with gender, age, deprivation and ethnicity and also by cancer type. Figure2.14 shows emergency presentation of the major cancers by different demographic characteristics. Almost half of all lung cancers and over a fifth of colorectal cancers are diagnosed after emergency presentation. This increases with age and deprivation and is significantly higher in Black ethnic groups.
Figure 2.15 shows some of the variation between local CCGs in terms of whether a cancer diagnosis is undertaken through a managed or an emergency route. Research is showing that cancers picked up at emergency admissions result in the patient experiencing much poorer health and survivorship outcomes.
Figure 2.15 also suggests that there is variation across the County and City. Local intelligence suggests that patients who live in the South tend to be treated at NUH. There are likely to be a breadth of factors determining these variations, including differences among the adult populations themselves and how they seek healthcare, however healthcare organisations are now able to start scrutinising and addressing the identified issues. It is clear that national policy direction is seeking to decrease the proportion of emergency diagnosis and that geographic differences need to be addressed.
Figure 2.15 Route to Diagnosis in NHS Nottingham City and neighbouring CCGs
Figure 2.15 also shows that Nottingham City is better or similar to England for the major cancer types but, particularly for lung cancer, a high proportion of cancers are diagnosed via emergency routes. The reasons for this can be attributed to. Emergency presentation being influenced by a number of factors (including absence of symptoms, not recognising symptoms, not presenting to primary care, not presenting for screening). Increasing diagnostics may increase the proportion and rate of cancers diagnosed by managed referral routes (and hence reduce the proportion of cancer diagnosed via emergency presentation) but may not have as direct an influence on the rate (per 100, 000 population) of cancers diagnosed by emergency presentation.
Table 2.2 Proportion of cancers diagnosed after emergency admission
Table 2.2 shows the number of cancers diagnosed after emergency admission. Lung cancer is the highest followed by colorectal cancer. As previously discussed Emergency presentation is influenced by a number of factors. Therefore it is important that work continues to ensure people are know the risk factors associated with cancer and present to the GP as soon as possible and take up screening programme.
To assess the impact of early diagnosis campaigns, screening programmes and improvements in healthcare it is important to have accurate and complete detail on the stage of a cancer at diagnosis. Stage is a measure of how much a cancer has grown and spread, with later stages having poorer outcomes. The proportion of cancers classed as early staging is now a Public Health Outcomes Framework Indicator PHOF 2.19, 2013). Nottingham achieves a slightly higher proportion than England; 46.8% compared to 45.7%. Bladder, breast, skin (melanoma), prostate and uterine cancers are more likely to be diagnosed at an early stage with over 50% of these cancers being diagnosed early. Non-Hodgkin lymphoma (NHL) and lung cancer are more likely to be diagnosed in the later stages with associated poor prognosis.
Figure 2.16 Proportion of cancers diagnosed in 2013 by stage and cancer type
Routes to diagnosis will be influenced by changes outlined in recent NICE guidance and the National Cancer Strategy. These changes are likely to lead to an increase in diagnostic activity. Therefore it will be important to ensure the process for staging is effective and systematic and we continue to measure both rates of diagnosis by route and the proportion of diagnosis by route.
Macmillan Routes from Diagnosis project
Macmillan’s ‘Routes from Diagnosis’ is a programme of research performing retrospective analysis of almost 85,000 cancer patients’ interactions with the NHS in England over seven years, in an attempt to understand people’s cancer journeys in detail. It demonstrates that while a significant proportion of people have on-going health and support needs; many people do not experience any side effects and have minimal support needs. Understanding and quantifying this helps the health care system to distinguish and respond to these two groups, and importantly can inform long term planning (Macmillan 2015). Information from the project is helping to inform cancer commissioning in Nottingham city whereby Macmillan are working closely with the CCG and key stakeholders on implementing the Macmillan cancer partnership which encompasses different 14 projects, see section
Direct Access CT Lung – ACE Project
Direct Access CT pilot allows GPs to refer a patient for a CT when a chest X-ray has proved inconclusive but the GP still has concerns. Following CT scanning patients are then triaged into 2WW, Respiratory services or back to the GP as appropriate. The vast majority of these patients will not have lung cancer and will not benefit from a visit to the lung cancer clinic, but will be easier to manage in primary care following a CT. Access was rolled out across Nottingham City CCG in January 2015 and then to Nottingham North and East CCG, Nottingham West CCG and Rushcliffe CCG in July 2015. NUH are now fully engaged with the ACE programme and have been granted funding for administrative support to assist with the data submission and evaluation
Radiotherapy and Chemotherapy are currently commissioned by NHS England. Review work is being planned at a national or local level across both and this is being managed through the Cancer Strategy Group and Working Together Programme. As such it is not currently within the scope of this HNA. The majority of Nottingham City CCG patients access services at Nottingham University Hospitals.
Living with and beyond cancer
The National Cancer Survivorship Initiative (NCSI) set out a clear aim in 2010 to ensure that those living with and beyond cancer would get the care and support they needed to lead as healthy and active a life as possible, for as long as possible. It identified the following five key shifts in approach in order to achieve this –
A cultural shift in the approach to care and support for people affected by cancer to a greater focus on recovery, health and wellbeing after cancer treatment
A shift wards assessment, information provision and personalised care planning A shift towards supported self-management A shift from a single model of clinical follow up to tailored support
A shift from emphasis on measuring activity to a new emphasis on measuring experience and outcomes for cancer survivors
Due to improvements in diagnosis, treatment and medical advances 50% of people diagnosed with cancer will now survive for at least 10 years. This sets cancer in a similar context to other long term conditions, reflecting the chronic nature of many consequences of cancer, its treatment, and the presence of co-morbidities.
There is a clear need to understand better the profile and needs of people living with and beyond cancer in order to grasp the opportunities to facilitate positive outcomes both in terms of direct service provision and progression into wider universal service provision to support continued health and wellbeing. The Macmillan Routes from Diagnosis project offers some insight into this picture.
Cancer And Rehabilitation Exercise (CARE) programme
CARE is a physical activity intervention run in partnership with Nottingham County Foot Ball Club and Macmillan for people who have recovered, or who are recovering from cancer. The project provides participants and their families with an environment to share stories, build strength, increase fitness levels, confidence & self-esteem. CARE is a tailored programme that meets the ability levels of the participants. Since starting in March 2015, CARE has received 82 referrals into the programme. Loughborough University are evaluating the project and the impact it has upon the health & wellbeing of cancer survivors.
Macmillan Cancer Support
‘Living Well and Beyond Cancer’ is a 2 year partnership between NHS England and Macmillan Cancer Support launched in August 2014 and building on previous work by the National Cancer Survivorship Initiative. The focus of this is predominantly on ensuring all cancer patients have access to a holistic needs assessment (HNA), treatment summary (TS), cancer care review (CCR) and a patient education and support event – the recovery package (Macmillan Cancer Support 2013). The programme also promotes risk stratified pathways of post treatment management, physical activity pathways and improved management to avoid or minimise the consequences of cancer treatment. The Achieving World-Class Cancer Outcomes Strategy (Independent Cancer Taskforce 2015) states that roll-out of this model should be accelerated so that by 2020 every person with cancer will have access to elements of the Recovery Package and stratified pathways of follow-up care will be in place for the common cancers. Elements of these programmes have been implemented locally as part of the Nottingham Survivorship Programme
Source: Macmillan Cancer Support (2014)