Cancer

The individual risk of developing cancer depends on age, lifestyle and genetic factors. Estimates show more than four in ten cancer cases could be prevented by lifestyle changes, such as not smoking, reducing alcohol consumption, maintaining a healthy diet and body weight, keeping active and avoiding excessive sun exposure (Source: Cancer Research UK). Risk and incidence of cancers increase with age – three in four cases are diagnosed in people aged 60 and over. More than a third of new cases are in people aged 75 and over (Source: Cancer research UK). 

Cancer accounts for over a quarter of all deaths in the UK and is the most common cause of death in people under the age of 60 (Source: National Cancer Intelligence Network; Older people and cancer, 2015). However, mortality rates have decreased in the UK and people live almost ten times longer, post-diagnosis, compared to 40 years ago, meaning a projected 4 million people will be living with cancer in the UK by 2030 (Source: Macmillan Cancer Support 2015). With improvements in diagnosis, treatment, and aftercare, Lincolnshire’s ageing population comprises over 32,000 people living with cancer. This is expected to rise to 45,400 by 2030 

People living with cancer often experience chronic loneliness, yet this common side effect is one of the least discussed. Even with close support networks, being the only one directly experiencing the disease can induce feelings of isolation, self-loathing and low self-esteem. Connecting with others, through peer support networks for example, can help allay these feelings (Source: Net Patient Foundation). 

Living with cancer has financial implications for individuals and society. One in three people with cancer lose on average £860 a month in earnings because they are unable to work, or must reduce their working hours (Source: Macmillan Cancer Support 2016). The full economic cost of cancer has been estimated at £15.8bn for the UK (Source: National Cancer Intelligence Network e- atlas). 

• NHS Long Term Plan (January 2019) commits to improve early diagnosis, personalise care and improve access to testing  
• NICE: Suspected Cancer: recognition and referral [NG12]. Evidence-based recommendations for the identification of people with symptoms that could be caused by cancer (updated December 2021) 
• NICE: Cancer. Collection of NICE guidance relating to cancers. 
• The Cancer Drugs Fund. Information about cancer drugs not routinely available on the NHS. 
• Implementing the Cancer Taskforce Recommendations (April 2016) examines commissioning of person-centred care for cancer sufferers. 
• Achieving world-class cancer outcomes: a strategy for England 2015- 2020. Improving cancer survival rates. 
• Taskforce report: achieving world-class cancer outcomes (Cancer Research UK) Six strategic priorities to deliver improved prevention, swifter diagnosis, and improved treatment and care for all cancer patients. 
• The Lincolnshire Living With Cancer Strategy 2021 – 2023 articulates how the needs of people living with cancer across Lincolnshire will be met. 
• The Palliative and End of Life Care Strategic Delivery Plan (2017-22) outlines improvement of care services by increasing access and promotion to patients and carers. 
• The Lincolnshire Joint Health and Wellbeing Strategy (2018) focusses on prevention and early intervention, whilst recognising the need to embed these across all health and care services. 

Liver, pancreatic cancer, and lung cancer have the lowest survival rates of all cancers among adults. Mortality rates from lung cancer in Lincolnshire are worse than the national average. Although smoking is not a direct cause for all cases of lung cancer, high smoking prevalence in Lincolnshire could be a contributing factor.  

Pressures, including the Covid-19 pandemic, have resulted in cancer waiting times below operational standards both nationally and locally. Shorter wait times can mean earlier diagnosis, quicker treatment, lower risk of complications, enhanced patient experience, and improved cancer outcomes (Richards, 2010). 

Cancer incidence and mortality are generally higher in deprived groups compared with affluent groups, for older compared with younger people, and for men compared with women. Overall cancer incidence is higher in the east of the county and lowest in the west, reflecting a correlation with deprivation and, potentially, lifestyle, education and awareness factors. 

Although breast cancer incidence is higher amongst affluent groups, mortality is still higher for less affluent women. Women are more likely than men to attend health appointments but embarrassment, family commitments, time and rurality often play a part in not going to see a GP at early stages. An inquiry into Geographical Inequalities and Breast Cancer found increasingly more women are surviving breast cancer, but that stark geographical inequalities exist across England for screening, early detection, and access to treatment and services. This picture is reflected in Lincolnshire. 

Prostate cancer is the most diagnosed cancer in Lincolnshire. Incidence of lung and bowel cancers, along with premature mortality, are higher amongst men compared to women both locally and nationally. Of particular note, this is true for premature mortality, and cancers considered preventable, highlighting the importance of healthy lifestyle behaviours and Public Health interventions.  

Some variance in mortality can be attributed to delayed diagnosis for those who are; deprived; older; of certain ethnic groups (at least for breast cancer). The picture for ethnic minority groups varies according to cancer type and ethnic group. In general, incidence is lower amongst ethnic minority groups. Lincoln, Boston, and South Holland have the greatest proportion of foreign-born residents. Zero hours contracts are high within districts that have a concentrated migrant population. Qualitative evidence suggests, those who do not take time off work for appointments and treatments may be diagnosed at later stages of cancer, or may not attend their treatment (Source: EPOC Lincolnshire Annual Cancer Report 2016). 

A reduction of mortality rate has been slower for older people than for younger people. Older people with cancer receive less intensive treatment than younger people. This may be clinically appropriate, however, there is increasing evidence that under-treatment of older people may occur (Source: Macmillan: The Age Old Excuse: The Under Treatment of Older Cancer Patients 2015). 

Cultural and socioeconomic factors influence the uptake of behavioural risk factors, such as smoking, poor diet and excessive alcohol consumption. These behaviours exacerbate inequalities in cancer outcomes. For example, 25.4% of avoidable mortality from all cancers (except non-melanoma skin cancer) occur in the most deprived 20% of the population; the incidence rate of avoidable cancers is 2.33 times higher in the most deprived, compared to the least deprived quintile (Source: NHS Lincolnshire ICS). 

Smoking is most prevalent amongst the unemployed, and is 2.5 times more common amongst routine and manual workers than managerial and professional groups (NHS Digital). Cultural norms affect the likelihood of smoking initiation and quitting. Given smoking is the biggest cause of lung cancer, resulting variation in lung cancer and mortality correspond with these populations. 

Incidence and mortality rates of bowel cancer are higher amongst the most deprived communities (Source: Cancer Research UK). 54% of the risk for bowel cancer is attributable to lifestyle factors, such as poor diet, obesity and smoking – all of which are more common amongst deprived populations. For example, the most deprived women are 1.8 times more likely to be obese than the least deprived (Source: PHE), and the most deprived men consume far less fibre and more processed meat than the general population (Source: Food Standard Agency). These lifestyle inequalities are likely to have an impact however, Lincolnshire’s inequality in bowel cancer is less straightforward than that at a national level. After standardizing for age, premature mortality is highest among the two most deprived quintiles, but the least deprived quintile also has above average mortality. Morbidity in the second most deprived quintile is lower than in all other quintiles (NHS Lincolnshire ICS). 

Many interventions address cancer; prevention, ongoing management, and treatment: 

• Lincolnshire County Council has commissioned an Integrated Lifestyle Service (ILS) to support smoking cessation, weight management, physical activity, and reduced alcohol consumption. This is a key primary prevention tool, targeting key cancer risk factors.  
• The System Cancer board develops cancer pathways to enable faster, and equal access to, treatment for all. This includes prevention, diagnosis, treatment, survivorship, and end of life care. 
• Two current focus areas are; to reduce the significant backlog of patients waiting over 62 days (created during the pandemic) and; to implement and meet 28 Faster Diagnosis Standard at all tumour treatment sites. 
• Lincolnshire will operate Rapid Diagnostic pathways and the National Faster Diagnostic Standard (FDS) to speed up cancer diagnosis and improve the experience of patients. The initial focus is to implement pathways for lower gastrointestinal, head and neck, gynae, prostate, oesophago-gastric, & lung cancer. 
• Under the Rapid Diagnostic pathway umbrella Lincolnshire rolled out a Non-Specific Symptoms (NSS) pathway. The NSS pathway takes accountability  for patients for whom the single ‘urgent cancer’ referral pathway does not cater for, as defined by NG12, but who are, nonetheless, at risk of a positive cancer diagnosis. Non-specific symptoms include; unexplained weight loss; fatigue; abdominal pain or nausea; and/or, upon the considered opinion of a GP. 
• The Lincolnshire ‘Living With Cancer Programme’ enables people with a cancer diagnosis to live as healthy and active a life as possible – before, during and after treatment.  
• The East Midlands Cancer Alliance aspires to improve health outcomes for cancer patients by sharing best practice, providing clinical advice, and addressing unwarranted variation across the region. 
• NHS England’s cancer screening programmes aim to identify breast, bowel and cervical cancer at an early stage.  
• Lincolnshire has taken part in Phase 1 of the Galleri Trial, a blood test that can detect early-stage cancer when used alongside existing cancer screening. Phase 2 and Phase 3 will be carried out in 2023/24.  
• The countywide cancer screening board plans and delivers works programmes to increase screening uptake, and address inequalities within screening programmes. The screening partnership comprises representatives of NHS, Public Health and Cancer Research UK. 
• A system wide Health Inequalities team has been stood up to address health inequalities across the system focussing on; access, digital exclusion, waiting times, emergency presentations, and reasons patients do not attend appointments. 
• United Lincolnshire Hospitals NHS Trust (ULHT) has multidisciplinary specialist teams, and local diagnostic and treatment teams, working with cancer patients. The ‘two week wait’ is a fast-track route to ULHT services if a GP suspects cancer. 
• ULHT provides radiotherapy and chemotherapy treatments at Lincoln County Hospital;  chemotherapy is provided at The Pilgrim Hospital, Boston, and at Grantham and District Hospital. Inpatient and outpatient cancer care is provided across the Trust for common cancers, but in specific localities for less usual diagnoses. A mobile chemotherapy unit travels across the county. 
• In February 2022, ULHT surgeons performed their first operation using a surgical robot. The device enables advanced, minimally invasive techniques, with a reduced risk of surgical complications. Previously, patients had to travel out of Lincolnshire for robotic prostatectomies and robotic colorectal surgery. 
• Lincolnshire Community Health Service NHS Trust, with Lincolnshire County Council, provide an Independent Living Team – short-term support to assist people to remain safely in their own home during their illness. 
• Grantham, Boston and Lincoln hospitals host Macmillan Information and Support Centres offering information about cancer and cancer services plus emotional support for patients, families, carers and staff. 
• People with advanced, incurable cancer, can benefit from early palliative end of life care (PEOL) (Source: Cochrane). But palliative care measures might not be instigated until it is evident that disease-modifying treatments have been unsuccessful, no treatment can be offered, or death is anticipated. Yest, early palliative care interventions might have a more beneficial effect on symptoms and for quality of life than standard treatments alone.  The foundations of PEOL care in Lincolnshire are in Primary Care. A Gold Standards Framework (GSF) provides the structure for co-ordinated care. PEOL care is delivered across all settings by generalist, core teams of health and social care professionals; third sector and voluntary services; with Specialist palliative care clinicians reaching in to support complex needs. 

During 2016/17 and 2019/20, the Living with Cancer Team ran engagement exercises for cancer patients, and their loved ones, to understand the experience of living with cancer in the county. 

Feedback revealed the following needs:  

• improved information governance 
• joined up pathways  
• integrated working 
• more support for the cancer workforce 
• clearer communication between healthcare staff and organisations 
• improved information, and provision of support and advice from point of diagnosis,  
• There are gaps in support services 
• There is inequality of support across the county 

The Living with Cancer Programme was developed around these patient experiences with projects being developed on the identified themes. For example, two Cancer Co-production Groups (county wide, and Mablethorpe) have been established to involve patients in service development; Holistic Needs Assessments are offered; access to psychological and emotional support has been improved; Cancer Care Reviews are taking place at GP practices; and personalised follow-up pathways have been implemented for breast, prostate, colorectal, and endometrial cancer patients. 

The Lincolnshire Cancer Patient Panel was established in May 2022, supported by ULHT and Lincolnshire ICB via the ULHT ‘Expert by Experience’ programme. 

Healthwatch surveyed Lincolnshire about available screening programmes. Feedback was positive about services, but residents often did not take up invitations to attend screening for embarrassment, fear, or time factors (e.g. not having appointments available when needed). 

Several patients must still leave the county to access specialist treatments that are only undertaken at specialist centres outside of Lincolnshire. However, this is not unique to Lincolnshire –  many NHS services are provided at a centralised specialist centre. 

Workforce capacity in secondary care negatively affects outcomes of; initial diagnoses, treatment, and long term follow up of cancer survivors.  

Patients report inequity in availability of holistic support depending on where you live (Lincolnshire Living with Cancer Strategy 2017 – 2019). Holistic Needs Assessment (HNA) data show there are areas of the county where patients do not receive an HNA, or that holistic needs are identified but patients are not referred into services for their needs. The Living with Cancer Programme is identifying and working towards filling these gaps so that there is more equity in support across the county. 

• Invest resources in preventative work programmes. This will result in financial savings to the NHS. Use modelling to identify savings of providing prevention initiatives for cancer treatments. 
• Improve cancer pathways: include opportunistic screening, earlier diagnosis mechanisms and improved treatment. 
• Undertake population level education to raise awareness of prevention, symptoms, risk factors, and the importance of early presentation. 
• Cancer CPD delivered to health professionals. 
• Gather robust data on long term conditions which are co-morbidities of cancer. 
• Support the uptake of Human Papilloma Virus immunisation by young women and promote the offer for Year 8 boys which began in September 2019. 
• Implement personalised follow-up pathways and living with cancer interventions (holistic needs assessment; personalised care and support plan; end of treatment summary; cancer care review in primary care; and access to health and wellbeing interventions). 
• Address findings of National Cancer Patient Experience surveys and Quality of Life Surveys