Cancer in Northern Ireland: Strategy and beyond
The World Health Organisation recommends that every country should have a cancer strategy regardless of resource constraints. The proposed 10-year Cancer Strategy for Northern Ireland (NI) aims to improve diagnosis, survival and the experience of those suffering with cancer. This long-awaited strategy follows in the wake of the COVID-19 pandemic, which has consequentially impacted diagnosis timing, care and treatment for cancer patients. This blog article explores cancer in NI, some of the key recommendations from the Strategy and their potential impact for cancer patients.
How many people suffer from cancer in NI?
In 2019, 14,504 people were diagnosed with cancer in NI. Non-melanoma skin cancer was the most common, followed by prostate and breast cancer for men and women respectively. Lung and colorectal cancer also have a high incidence in NI. Similar proportional incidence of these cancers are seen across United Kingdom (UK) jurisdictions and the Republic of Ireland (ROI).
4,463 people sadly died of cancer in NI in 2019. Lung, breast and prostate cancer have the highest mortality rates with risk of mortality strongly related to patient age. In addition, the most socio-economically deprived areas have a 29% higher mortality rate than the average for NI. Addressing health inequalities in deprived areas is of huge importance and every effort should be made to support people to lead healthy lifestyles and participate in cancer screening programmes. However, as suggested by the Strategy, a cross-departmental effort is required to address concerns of health and life-expectancy in deprived areas of NI, also for health beyond cancer.
Cancer survival in the UK was consistently worse than comparable countries both in Europe and internationally in the International Cancer Benchmarking Project; NI had the second lowest 1-year lung cancer survival amongst the 11 jurisdictions involved. Cancer diagnosis has increased by 54% in the last 25 years in NI and is predicted to double by 2040. Large increases are also expected for cancers with poor survival, such as pancreas, liver and lung cancers. With the number of cancer patients increasing, and the crucial need for better treatments for cancers with poor survival, a strategy for cancer care in NI is urgently needed.
Impact of the COVID-19 pandemic on cancer care
The pandemic has had devastating consequences on hospital waiting times and an already stretched infrastructure for cancer services. A reduction in face-to-face primary care has impacted swift cancer diagnosis. Delays to treatment, often in the patients’ interest given the risk of COVID-19, for both undiagnosed and diagnosed patients will likely lead to an increase in cancer deaths in the coming years. It was recently reported that ‘red-flag’ cancer patients are among the 17,000 children waiting over a year to see a hospital consultant.
The ongoing pandemic has also delayed the cancer strategy under the New Decade, New Approach Agreement, originally set for December 2020 by the NI Executive. Although a Cancer Recovery Plan was published in June 2021 to stabilise cancer services in the wake of the pandemic over the next three years, the Department of Health’s Cancer Strategy is eagerly anticipated considering the immense task of coordinating the infrastructure needed to bring NI in line with other jurisdictions.
Cancer Strategy in NI
Cancer strategies are in place for England, Scotland and the ROI, and a cancer delivery plan for Wales. Development for an updated Cancer Strategy for NI commenced in May 2019, but with significant delays due to the COVID-19 pandemic the Strategy consultation recently closed (20 October 2021).
The Strategy has three overarching aims:
- To reduce the number of people diagnosed with preventable cancers.
- To improve cancer survival.
- To improve the experience of people diagnosed with cancer.
Cancer prevention and the NI strategy
Four in ten cases of cancer in the UK are preventable. Not smoking, eating a healthy diet, maintaining a healthy weight, reducing alcohol intake and regular exercise can make cancer less likely. The Department of Health recently published the 2020/21 Health Survey in NI documenting alcohol consumption, prevalence of smoking and eating habits. Exercise was also documented, with only 36% of respondents reporting thirty minutes on five or more days a week, whereas no exercise was reported by 20%.
Primary prevention to reduce incidence remains the best long-term strategy to reduce the cancer burden. Public awareness is paramount to communicating cancer prevention methods. Other UK jurisdictions run regular and successful awareness campaigns; ‘Be Clear on Cancer’ successfully increased the numbers of early-stage operable lung cancer in England. The Public Health Agency developed a cancer awareness programme for Northern Ireland, Be Cancer Aware, in 2015. Although there is a dedicated website, there have been no media campaigns largely due to funding constraints.
The Cancer Strategy aims to raise public awareness to preventable risks of cancer and to implement current strategies (Tobacco Control Strategy, Substance Abuse Strategy, and Skin Cancer Prevention) while aiding development for an obesity and new skin cancer prevention strategy. The Strategy also aims to coordinate with the Department of Agriculture, Environment and Rural Affairs to support the development of Northern Ireland’s first Clear Air Strategy, given the International Agency for Research on Cancer confirmed outdoor air pollution as a cause of cancer in 2013. NI is the only UK jurisdiction to not have a clean air strategy in place.
As our knowledge surrounding different cancers and best methods of prevention increases, we can successfully target these cancers before they become untreatable. Recent research in England has shown the human papillomavirus (HPV) vaccination programme to be a huge success in reducing cervical cancer by nearly 90%, effectively almost eliminating it in women born after 1 September 1995. According to the Department of Health, almost 90% of girls have completed their full HPV vaccination course over the last 10 years in NI. Since 2019, HPV vaccines are available to adolescent men, bringing NI in line with the rest of the UK.
NI Cancer Strategy: Diagnosis
Cancer survival is significantly improved with swift diagnosis and acceleration to treatment. To do this, diagnosis and referral frameworks are needed.
In 2015, the National Institute for Health and Care Excellence (NICE) published guidance ‘Suspected cancer: recognition and referral NG12’, currently adopted by England and Wales. NI currently uses its own guidelines developed by the Northern Ireland Cancer Network. Given that NG12 details how suspected cancer should be dealt with by primary care, which is often the first step towards quick diagnosis, the NI Strategy aims to implement NG12 guidance by 2024.
However, concerns have been raised about the additional pressure NG12 guidance would place on already stressed GP services, given that GPs would have greater access to diagnostic tests for certain cancers (X-ray, CT, MRI, ultrasound and endoscopy etc.). One potential method to relieve pressure would be the introduction of cancer hubs, originally developed in Denmark, to allow people with vague but worrying symptoms to be assessed. Following successful pilot studies, England, Scotland and Wales have adopted the concept during an overhaul of their diagnostic services. Currently in NI, tests for cancer are carried out linearly (one at a time), resulting in repeated appointments and longer diagnosis time with no provision to order ‘clusters’ of tests together. To address this, the NI Strategy aims to develop similar diagnostic hubs with an integrated service to increase cancer diagnosis regionally and reduce pressure on GP services.
Currently NI does not have a specific requirement for diagnosis time. 95% of patients should have a 62-day wait time from referral to first treatment. Despite its introduction in 2009, this target has never been met. England, Scotland and Wales have a 62-day target from referral to start of treatment. England also specifies a 28-day diagnosis time within this 62-day target and is the only UK jurisdiction to do so. The NI Cancer Strategy will introduce a 28-day diagnosis standard, in line with England; however, as evidence from Pancreatic Cancer UK (PCUK) would suggest, this may not be adequate for late-stage advanced disease. 80% of people diagnosed with pancreatic cancer have advanced disease, with more than half of people diagnosed with pancreatic cancer dying within 3-months. This would suggest that, for aggressive cancers, 62 days may not allow adequate time to begin life-saving treatment. PCUK is campaigning for pancreatic cancer treatment to start 20 days after diagnosis. It would appear that greater research into early diagnostic tests and having infrastructure in place to allow swift diagnosis is crucial to saving lives from cancer.
The NI Strategy also aims to ensure all people diagnosed with cancer have appropriate, targeted information and support to live well and reduce the risk of long term consequences and developing secondary cancers. Recently NHS England and NHS Wales have announced they will commission an audit on secondary breast cancers following a 15-year campaign from Breast Cancer Now. However, the NI Health Minister has stated:
Unfortunately NI does not currently collect and organise the data necessary to carry out this audit.
However, the Department of Health has said data collection is central to their Cancer Strategy. The lack of current data collection on cancer treatment and outcomes in NI makes assessment, and therefore improvement to service, difficult. Audits would also allow benchmarking against cancer outcomes elsewhere in the UK and local data would allow for regional improvement of cancer service. Together these issues highlight the need for data collection, not just for secondary breast cancer but for all cancers.
NI Cancer Strategy: Treatment
Fast diagnosis is crucial to beginning cancer treatment before the cancer becomes difficult to treat. Cancer treatments aim to get rid of the cancer while minimising side-effects to the patient. Although better treatments have revolutionised survival for many cancers, cancer of unmet need – lung, pancreatic, brain and oesophageal cancer – have had limited progress in survival over the last 10 years, often due to lack of progress in treatments available. Administering innovative and effective treatments, alongside funding research for the next generation of cancer therapies, are key to cancer survival.
Significant improvement of current infrastructure is required to deliver efficient and effective treatment to patients. The Strategy aims to further develop this, including:
- A fully integrated 7-day acute oncology service across all Trusts; and
- Ensuring effective Multi-Disciplinary Team meetings are held for all people diagnosed with cancer including cancer of unknown primary and metastatic disease, due to their effectiveness in other UK jurisdictions.
Surgery is pivotal to non-haematological cancer treatment and, for many cancers, has the potential to be curative. In light of this, the Strategy will develop a plan for the introduction and implementation of new surgical technology over the next 10 years. Considering the global pandemic exacerbated the already struggling healthcare system in NI, the Royal College of Surgeons England has composed a ‘Northern Ireland Action Plan for Surgical Recovery: 10 steps, not 10 years’, which highlights a 40% drop in red-flag cancer cases and 34% drop in suspected cancer inpatient activity during the pandemic. Their recommendations include the need for investment, surgical hubs and support for surgical trainees for both cancer surgery and all other surgeries in NI.
Although there are five main cancer units, located in each of the five Health and Social Care (HSC) Trusts, cancer centres are only located in two HSC trusts; the Northern Ireland Cancer Centre – Belfast City Hospital and the North West Cancer Centre – Altnagelvin Hospital. Surgery, radiotherapy and systemic anti-cancer treatment (SACT), like chemotherapy or other anti-cancer drugs, are used to treat a range of cancers yet their services are varied across Northern Ireland. Since 2013, the ROI has introduced seven hospital groups, including a children’s hospital with designated cancer service status. Currently there are nine cancer centres and 17 public hospitals with the capability to deliver SACT regionally across the ROI. The NI Strategy aims to review the model of SACT delivery services to include delivery of treatment close to home by 2024 in line with the cancer recovery plan.
In addition to current SACT, the Strategy will also consider the development of CAR-T immunotherapy services for NI. These next generation therapies have been widely available in England for adults and children with certain leukaemia and lymphoma since 2018, with Scotland and Wales each operating one centre. The ROI currently does not offer CAR-T therapy.
Other next generation cancer therapies include Osimertinib, a drug that cuts the risk of lung cancer patients suffering a return of disease in half. Currently, NHS England have secured clinical trials for 100 non-small cell lung cancer patients. Yet the lack of availability for new cancer treatments through clinical trials in other UK jurisdictions is apparent. Data from the 2018 Cancer Patient Experience Survey found only 15% of NI patients reporting that they had been asked about taking part in cancer research/clinical trials compared to 31% for England. There is also disparity within NI itself, with the majority of clinical trials occurring within the NI Cancer Centre in Belfast Trust. The NI Strategy aims to facilitate access to clinical trials for as many people as possible, including children and young people, but this also requires multidisciplinary infrastructure within each HSC Trust.
Biomedical research has been identified as integral to the development of better diagnostics, new cancer drugs and subsequent clinical trials. Scotland, Wales, England and the ROI all have detailed recommendations to facilitate and invest in cancer research, embedding research into the ethos of the healthcare service. Beyond clinical trial access, the Strategy aims to develop infrastructure for research and engage with universities and industry to improve cancer outcomes in NI. However, further details surrounding these aims are not present within the NI Strategy. Funding into research leads to better treatments and diagnostic tests, which in turn lead to better cancer survival for people in Northern Ireland.
NI Cancer Strategy: Patient Care
The Strategy’s focus on patient centred care has been warmly welcomed by cancer charities in NI. Particularly the Strategies’ commitment to ensure all cancer patients, including children and young people, have access to a Clinical Nurse Specialist (CNS) throughout their entire care pathway. This recommendation followed the 2018 NI Cancer Patient Experience Study, in which CNS staff were found to be pivotal to the patient’s experience of care. Similar recommendations have been made in other jurisdictions; in addition to CNS access, NHS England developed cancer recovery package guidelines to support people affected by cancer.
The Strategy also makes provision for when cancer can’t be cured and palliative care and support should be offered. Arrangements for a palliative care keyworker and equitable access to end-of-life support and continuity of care for all people with non-curative cancer should be made available 24/7.
The Strategy provides much needed direction for cancer care in NI, particularly in the wake of extensive hospital-waiting times exacerbated by the pandemic. The Strategy aims to reduce preventable cancers and improve treatments available to cancer patients while providing those cancer patients with an improved standard of care throughout their treatment. A concerted effort will be needed to address the key aims of the Strategy, including improvement, reorganisation and installation of much needed regional infrastructure to meet the needs of the proposed diagnosis and treatment pathways. Considering the rising incidence of cancer, prevention remains a key focus for the Strategy. We each have a responsibility for our own health by living healthier lifestyles to reduce the risk of cancer.
Funding for this much needed Strategy is currently not available within the Department of Health’s financial budget. Significant funding will be required on a recurring basis to meet the 67 recommendations and improve cancer care for people in NI.