Suffolk & North East Essex Integrated Care System

Earlier cancer diagnosis and treatment

Achieving this Higher Ambition will mean that:

All people in Suffolk and North East Essex have better cancer outcomes.

As an Integrated Care System we will ensure that:
  • People have the knowledge and tools to identify symptoms and signs of cancer
  • People have the confidence that early diagnosis and treatment will benefit their outcome
  • People take up screening offers
  • There is a greater range of appropriate testing for high risk populations
  • Health care professionals have the knowledge to recognise and take action on signs and symptoms of cancer
  • When symptoms of cancer are identified there is rapid access to diagnostic services and a quick answer

The UK has some of the world’s leading cancer research groups and programmes. Despite this, it has unacceptable differences in survival rates and reported cancer outcomes as a whole remain below those in comparable countries. Cancer Research UK reports that the most likely reason for this differential lower survival is the difference in stage at diagnosis.

There is strong evidence that earlier diagnosis offers significant benefits. For example, in colorectal cancer 90% of patients diagnosed at stage 1 live 10 years or more, compared with 5% diagnosed at stage 4. In addition, treatment is shorter and less complex and has fewer side effects, improving experience of care and quality of life. Treatment at an earlier stage is less expensive to the healthcare economy.

Primary care assessment of possible cancer symptoms can be complex. Symptoms are often similar to benign self-limiting conditions. The National Cancer Patient Experience Survey (2017) showed that just under a quarter of patients subsequently diagnosed with cancer, saw their GP 3 times or more before referral for tests, after initially presenting in Primary Care. 8% of patients saw their GP 5 or more times before referral. Studies on symptom presentation in England suggest that 50% of cancer patients do not have symptoms that would trigger an urgent referral under NG12 (NICE Guidance).

The study by Rose in 2015 found that English primary care practitioners have a low propensity to refer or investigate symptoms for cancer at first presentation, have a low level of direct access for test such as imaging for cancer, and have a low level of access to specialist advice in problematic cases.

"Research has shown that onward referral to specialist care in countries with a gatekeeping role for primary care (i.e. the UK) is later and one year survival lower than in countries without such a filter function. General Practitioners in England see up to a quarter of cancer patients three or more times before a hospital referral and access to diagnostic tests by English GPs is less than half of that found in other countries. In addition, English GPs have poorer access to specialised advice to guide investigation or referral."

    It was in March 2018 that I first noticed a lump in the left side of my abdomen. This came as a tremendous shock as I had felt well and fit but was aware that this mass could be very sinister. I booked an appointment to see my GP on the following Monday and he referred me immediately to see a gastroenterologist. I received my appointment two weeks and one day later. A week after an appointment with the gastroenterologist I had a CT scan, but my follow-up appointment did not happen until mid-May. This was far too long to wait for such an important diagnosis, so I rang the secretary who brought it forward The secretary thought she was reassuring me when she said, “Don’t worry if they find something wrong, they will get hold of you sooner than that.” Needless to say, I did get an early phone call giving me an appointment to see a gynaecologist. I was confused as to why I should need a gynaecologist when I had a lump in my abdomen. At the Gynaecology appointment the doctor told me that it may not be ovarian cancer but something benign and very treatable. I was so surprised having steeled myself for the cancer diagnosis, that tears fell from my eyes. Further tests were arranged I was emotionally very anxious, it was now five weeks after my first visit and I didn’t seem to be any further on in reaching a diagnosis. I had several tests, but I then found out I had been transferred to another hospital, and was told to have another scan. In mid May, on the day I returned from a short break , I found a letter waiting for me. It was a copy of a letter sent to my GP and from this letter I learnt that I definitely had ovarian cancer and also that the cancer had metastasized. Having been seen by a number of doctors and having a number of tests, no one had the time nor the inclination to make an appointment to talk to me and find a gentle way of telling me about my cancer and the plan of treatment that they intended for me. I should have been kept totally involved and fully informed about my condition. Had the information been explained to me by a doctor who could answer my questions before I read that letter, I would have not received such a shock and felt the fear and anger that I did feel. Once I knew exactly what the situation was, I was able to get on with the battle against my cancer with  wonderful support from the nurses. At the moment, although not cured the cancer is inactive and I am leading a near normal life with regular check-ups.

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In Suffolk and North East Essex outcomes in one-year survival are generally better than the national average. However, for the breast cancer, the one-year survival rates have declined from 92% in 2013 to 80% by 2015 and are below the national average for all areas of the ICS. There is also a high level of variability in outcomes across the three Alliance areas. There are also high levels of variation in the numbers of patients seen via two- week referrals across the range of tumour types.

  • Breast cancer screening uptake in Suffolk and North East Essex has declined from 78.4 % in 2012/13 to 75.7% in 2017/18
  • Cervical cancer screening uptake has declined from 76.4% to 74.3% over the same period
  • 25.1 % of lung cancer patients are diagnosed at stage 1 or 2
  • 45.9% of colorectal patients are diagnosed at stage 1 or 2
  • National target for diagnosis at stage 1 and 2 is 75%
  • There is variation between pathways, for example in West Suffolk 98% of breast cancer patients are seen within two weeks, compared to 84% of skin cancer patients

Studies have shown that there is low UK public awareness of the risk of cancer increasing with age. In addition, the UK has the highest rate of perceived barriers to seeking medical advice on symptoms compared to countries such as Australia, Sweden and Canada where outcomes are significantly better. This was most clearly expressed in terms of worrying about wasting the doctor’s time, which was cited as a cause of delay by 34% of UK subjects.

A study by CRUK (3) showed that although recognition of cancer alert symptoms was high, over a third of patients agreed or strongly agreed that they would be put-off going to the doctors by:

  • Finding it difficult to get an appointment
  • Difficult to get an appointment with a GP of their choice
  • Not wanting to talk to the GP receptionist about their symptoms
  • Not wanting to be seen as someone who makes a fuss
HOW we plan to make a difference:
  • We will ensure people have access to the right information, advice and awareness of the symptoms of cancer, including the importance of screening. Patients diagnosed early have the best chance of curative treatment and long-term survival. Our aims include reducing the number of people diagnosed with cancer in emergency care, as this can mean their cancer has reached an advanced stage.
  • Awareness raising campaigns will include healthy lifestyle information and advice. Keeping people healthy, reducing use of tobacco and alcohol, healthy weight, safe workplaces and other factors help to prevent around 4 in 10 cases of cancer.
  • Awareness raising campaigns will include statistics on the benefits of early diagnosis.
  • GPs and primary care practitioners will actively encourage people to attend screening, and any follow-up tests. This will include explaining the benefits of following up symptoms and myth busting.
  • More people with breast cancer will be detected through screening. At 76% coverage Suffolk and North East Essex achieves a better rate than the England average, however we will work to ensure that this coverage increases.
  • More people with bowel cancers will be detected, and diagnosed earlier, through improved screening. The Faecal Immunochemical Test (FIT) will be easier to use for patients and screening will start earlier at age 50. FIT has been shown to improve takeup rates by 7% including among groups with low participation including men, Black and Minority Ethnic people and those in deprived areas. In 2017- 18, 61.6% of eligible people were screened for bowel cancer.
  • More woman at risk of cervical cancer will be detected through screening. We will implement HPV primary screening for cervical cancer by December 2020. HPV testing is more sensitive and more reliable than current methods so will detect more women at risk, to facilitate treatment to prevent cancer. We screened 74% of eligible women for cervical cancer in 2017-18.
  • More HPV-related diseases in boys e.g. oral, throat and anal cancer, will be prevented by vaccination with all boys aged 12-13 being offered vaccination, starting in September 2019.
  • We will build on the success of previous local public awareness campaigns, ensuring they are aligned to national initiatives.
  • We will improve access to familial history taking and genetic testing where appropriate for the families of people newly diagnosed with breast cancer.
  • We will improve the monitoring of conditions that could lead to cancer, such as upper gastrointestinal conditions and liver failure. Monitoring will be based on best practice and NICE guidance.
  • More people with lung health conditions including cancers will be diagnosed at an earlier stage through lung health checks. We will support the plan for wider roll out of lung health checks depending on evaluation of Phase 1 of the Targeted Lung Health Checks Programme) to pick up cancers and other lung health conditions. Starting in 2020, people will have a breath test and discussion, and if at high risk have an immediate CT scan. More mobile scanners will be deployed, starting in areas with lowest survival rates to help reduce health inequalities in outcomes. Lung health checks trialled in Manchester found 65% of lung cancers diagnosed at Stage 1, and 13% at Stage 4, compared to 15% at Stage 1 and 48% at Stage 4 before the trial. By 2022, people will have a breath test and discussion, and if at high risk have an immediate CT scan.
  • We will implement the learning from the current Independent Review of National Cancer Screening Programmes in England and learning from other examples of best practice. The Review will recommend improvements in management and capacity of screening programmes, ensuring local needs are met to increase uptake.
  • GPs and other primary care clinicians will identify people at risk of cancer early, using latest NICE guidance. Lowering the threshold for referral by GPs will help increase the numbers of cancers diagnosed at an early stage. GPs will need support and education to ensure they are able to implement the guidance effectively. Such neighbourhood approaches will enable locally designed interventions to support earlier diagnosis that respond to local needs and challenges.
  • We will develop a vision for the future shape and skills mix of the workforce required to deliver patient-centred cancer services. We will review the introduction of new roles such as pathway coordinators and how they support faster diagnosis for patients.
  • We will implement a new Faster Diagnosis Standard of 28 days from referral to diagnosis/ ruling out of cancer. For fast growing cancers, shorter intervals between referral to treatment improves survival rates and people’s experience of care. Furthermore, people with non-specific but concerning symptoms will be able to access diagnostic testing quicker through vague symptoms pathways. Monitoring will be through a Faster Diagnosis Standard: data collection starts from 2019, and full monitoring begins from April 2020, supporting the goal that 75% of patients with cancer will be diagnosed at stage 1 or 2 by 2028. We will deliver radiotherapy within 31 days from decision to treat to treatment. Our aim is for the most urgent cases as defined in the national radiotherapy service specification to commence treatment within two weeks.
  • We will support the implementation of a Rapid Diagnostic Centre (RDC) pathway, including self-referrals for red flag symptoms. This will deliver a community based diagnostic service to support earlier diagnosis in our ICS from 2020. This will build on previous good practice of vague symptoms clinics within our trusts. Those who do not have cancer will be referred for the right support. We are the North Cancer Alliance test site for RDC; one RDC will be established in each regional Cancer Alliance area by 2020, with further roll-out by 2023/24.
  • Primary Care Networks help improve early diagnosis locally. Neighbourhood approaches enable locally designed interventions that respond to local needs and challenges, and can help innovate in developing faster and more direct access to testing. There will be continued support for primary care cancer educations for both GPs and practice nurses.
  • People will be able to have multiple tests for cancers at a single visit. We will reform organisation of diagnostic services and invest in resources. Better organisation improves quality of care and patient experience and reduces variation in clinical outcomes. We will ensure patient-centred cancer services continue to be developed with patient engagement and feedback as a core component in service development and improvement.
  • Additional roles have been recruited for 18-months to help embed changes in the pathway, e.g. new Pathway Coordinators to help prevent delays, and Straight-to-Treatment Specialist Nurses
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