People Living With Cancer
Population Outcome: People Living with Cancer in Suffolk and North East Essex Stay Well
Early diagnosis, the best quality cancer treatment, care and support are essential if everyone in Suffolk and North East Essex is to stay well. Awareness of symptoms, access to screening and prompt access to testing enables early diagnosis. High quality information, treatment and care improves chances of recovery and good quality life for people and their carers and families.
Prevalence and Incidence Data
- Prevalence of cancer was higher than the regional average in all CCGs across Suffolk and North East Essex.
- In 2019/20, there were 6,541 new cases of cancer in the Ipswich and East Suffolk CCG, West Suffolk CCG and North East Essex areas – this is a rate of 635 new cancer cases per 100,000 population (2019/20) (compared to the England rate of 531 per 100,000).
- There is a higher percentage of over 65s in SNEE than the national average – crude rates don’t take account of age (22.2% compared to 17.4%).
- In SNEE there were In the period 2017-19, 56.9%, 56.2% and 58.4% of cancers were diagnosed at stages 1 or 2 in Ipswich and East Suffolk CCG, North East Essex CCG, and West Suffolk CCG areas respectively
Diagnosis and Treatment Data
- For cancers in total, two-week wait is the commonest route to diagnosis, followed by GP direct referrals.
- This does vary by type of cancer – for example lung cancer is more likely to be an emergency presentation (a third of lung cancers are emergency presentations) although this trend is gradually reducing
- There is some correlation between deprivation and later presentation
- More than 1 in 3 of all breast cancers, and around half for women aged between 50-69, detected through screening.
- Around half of diagnoses are of the most common cancers – breast, lung, prostate, and colorectal – and the other half are of rare or less common types.
- Less common cancers often have non-specific symptoms.
- Less common cancerResearch has shown that people in the UK are more worried and embarrassed than those in other countries about seeing their doctor with a symptom that might be serious.
- In 2021, cancer was the underlying cause of around one in four deaths in both Suffolk and North East Essex.
- Premature mortality – aged under 75.
- Preventable mortality – could mainly be avoided through effective public health and primary prevention interventions.
- 4 in 10 cancers could be prevented
Five Year Survival Data
- Survival varies between cancer types, ranging from 98% for testicular cancer to just 1% for pancreatic cancer.
- Many of the most commonly diagnosed cancers have ten-year survival of 50% or more (2010-11).
- More than 80% of people diagnosed with cancer types which are easier to diagnose and/or treat survive their cancer for ten years or more (2010-11).
- Early diagnosis is associated with improved cancer survival outcomes. Less than 20% of people diagnosed with cancer types which are difficult to diagnose and/or treat survive their cancer for ten years or more (2010-11).
Possible explanations for the lower survival in people living in more deprived areas include differences in:
- diagnosis (delays, advanced stage of disease);
- treatment (delays, poorer access to optimal care and lower compliance);
- worse general health (worse in more deprived) and type of disease (histological type or more aggressive disease)
- In the UK, approximately one in four of those who have been diagnosed with cancer at some point in their lives face poor health or disability after treatment for cancer.
- Long-term consequences of cancer and its treatment include both physical and mental effects: e.g. chronic fatigue, sexual difficulties, mental health problems, pain, urinary and gastrointestinal problems, and lymphoedema.
- The impact of cancer and its treatment affects much more than just health and wellbeing – wider implications include social isolation, financial worries caused by disruption to work, and the potential impact on education and future prospects for those who are treated for cancer as children or young adults.
- Biggest factor contributing to gap in life expectancy between most and least deprived for women (1 year), and second biggest for men (1.37 years).
- People with cancer face significant extra costs of nearly £900 when they get diagnosed, such as buying extra clothes, food or using more heating to stay warm
- Risk factors
- White people more than twice as likely to get some types of cancer, including melanoma skin cancer, oesophageal, bladder and lung cancers
- Black people are more likely to get prostate cancer, myeloma (a type of blood cancer), womb cancer, stomach and liver cancers
- Asian people are more likely to get liver cancers.
- differences are likely largely, but not entirely, driven by non-genetic cancer risk factors.
- White people are generally more likely to attend screening
The Story Behind the Outcome
High quality cancer care
Delays in diagnosis
ESNEFT Receiving a Cancer Diagnosis
Strains on family members
Waiting for diagnosis
Hospital cancer care
Barriers to screening for cancers
- more common among men and people from ethnic minority backgrounds
- fear of finding out you have cancer, or fatalism ‘there is nothing that can be done about it’
- embarrassment or discomfort as screening involves intimate body parts or functions
- for example feeling judged for being a smoker
- juggling work or caring responsibilities to attend an appointment during the day
- financial cost of attending, especially loss of wages
- carers giving priority to the people they care for rather than themselves
It recommends improving uptake through flexible appointments, text reminders and re-invitations, and publicity to ensure communities with low uptake are fully informed.
Race and Ethnicity
In 2018 the Race Equality Foundation found:
- Patients who are members of black and minority ethnic groups report more negative experiences of cancer care than white ethnic groups.
- Understanding the prevalence and experiences of cancer in black and minority ethnic groups is hindered by a lack of data relating to these communities.
- Health care providers have a poor understanding of the needs of black and minority ethnic communities.
- There is a lack of health education regarding cancer and awareness of the availability of support services is limited among black and minority ethnic communities.
- There is a lack of cultural competence education for health providers, especially in cancer awareness.
Macmillan highlights that for Gipsy and Traveller communities:
- A lack of understanding in hospitals of Gypsy and Traveller culture can result in ill-treatment, leading to many avoiding services where they have had negative experiences.
- Displaced Travellers who are forced to stop in illegal or unsafe places have difficulty registering with a GP practice, leading to overdependence on A&E and late presentations at the point of crisis.
- Levels of literacy can lead to difficulty completing forms and accessing information.
- A culture of self-reliance can impact on acceptance of a life-threatening diagnosis and mental health needs such as stress, anxiety and depression.
- Gypsy and Traveller communities need culturally sensitive support recognising their needs and preferences for the ways and places that they are cared for, the importance of family networks, and gender roles in the community.
Gender and Sexual Minorities
- Integrating cancer care considerations for LGBTQ+ patients into the training and assessment of the oncology workforce.
- Co-produced education and training materials on the cancer care needs of LGBTQ+ patients.
- Local training in cultural competency and humility with feedback from LGBTQ+ patients.
- The recording of sexual orientation, gender identity, preferred name and pronouns as part of routine oncology consultations, with example scripts for how to do this sensitively.
- Increased sexual orientation and gender identity recording in primary and secondary care providers and disease registries.
- Ongoing audit and quality improvement of the care of LGBTQ+ patients within oncology.
- Encourage diversity within the oncology workforce and representative committees.
Long Term Effects of Cancer Treatment and Experience
- Physical and mental effects include chronic fatigue, sexual difficulties, mental health problems, pain, urinary and gastrointestinal problems, and lymphoedema (persistent tissue swelling caused by fluid retention).
- Certain treatments for cancer also increase the risk of other serious long-term conditions such as heart disease, osteoporosis or a second cancer
- Wider implications include social isolation, financial worries caused by disruption to work, and the potential impact on education and future prospects for those who are treated for cancer as children or young adults.
Having cancer impacts on people and families practically, financially, emotionally and physically. Research by Demos commissioned by Pfizer found:
- Cancer patients incurred an additional £570 a month on average due to their illness.
- Some had to reduce their hours or change role due to chronic fatigue, impacting on income.
- Many were deterred from applying for benefits by the complexity of the system, while others had their benefits reduced or withdrawn, causing further hardship.
- Over three in four described negative impacts of cancer on their family and social life, due to side effects of medication, vulnerable immune systems or impacts on mental health. 10% said the effect was positive, e.g. a chance to re-evaluate their priorities.
- People were positive about the support they receive, but access is not always easy:
- people with rarer forms of cancer had more difficulty accessing services, especially those in more rural areas.
- those with ‘watch and wait’ diagnoses had stress, anxiety and fatigue, combined with the uncertainty inherent in ‘watch and wait’, but feel they are offered less support.
References & Further Reading
What we know matters to people living with cancer and why
|I can recover through prompt diagnosis||Awareness of symptoms and when to seek help means I can seek help if I have signs of possible cancer.|
Prompt and easy access to screening and diagnostic tests means I can be diagnosed at an early stage, improving chances of recovery and survival.
|I can recover with high quality treatment and care||Access to the best personalised treatments and technology improves chances of recovery and survival.|
Kind, caring compassionate staff who communicate well with me and with each other enables me to have a positive experience of my treatment.
Support to manage the emotional and practical impacts of cancer diagnosis and treatment helps me and my carers and family to cope and to recover.
|I have the advice and information I need to live well||Information on what to expect from testing and treatment, and where I can seek support, helps me to understand what is happening, to minimise stresses on me, my carer and my family, and to know how and where to seek help if I need it.|
Prompt access to advice and testing is crucial if I become worried that my illness is returning.
|I am treated as an individual||Treating me, my carer and my family with dignity and respect, recognising my culture, characteristics and life circumstances, means my care and support is inclusive, sensitive and responsive to my needs.|
|I am seen and heard||Professionals who actively listen and respond enables me to have the right diagnosis first time.|
Having choice and control over my treatment and support means I can better manage my health and wellbeing and recovery.
How will things be different in Suffolk and North East Essex
|We will develop cancer screening at the times and in places convenient to people so that it is easier to access.||We will recognise the impact of a cancer diagnosis and treatment on people, their carers and families’ physical and mental health, and provide emotional and practical support.|
|We will co-produce targeted campaigns to increase awareness of screening, have confidence in the procedures, and encourage access to testing and screening among groups and communities at higher risk of specific cancers.||We will enable people to access expert advice promptly if they are worried their cancer may have returned.|
|We will co-produce high quality personalised joined up cancer care services that communicate well with people and with each other.||We will support people to maintain their health and wellbeing before, while waiting for, during and after treatment to help them stay well and recover well.|
|We will co-produce information people need to live well during and after treatment, including side effects of treatments, practical and financial help available.|