A fresh Vision for Cancer in Northern Ireland
Cancer Focus Northern Ireland Manifesto for the Assembly Elections 2017
Cancer is the single greatest cause of premature death in Northern Ireland, with cancer rates and morbidity highest among socially disadvantaged communities. This represents an enormous burden of inequality, ill-health, premature death, family bereavement and loss. The vast majority of the people you represent will have been affected by cancer – either as a cancer survivor or as the friend or family member of someone who has survived or died from this disease. These constituents are looking to you and your Party to strenuously address those factors which are causing outcomes for cancer patients in Northern Ireland to be substantially worse than those in other developed countries.
Every year almost 9,000 men, women and children in Northern Ireland are diagnosed with cancer (excluding non-malignant skin cancers). Today and every day 24 people will receive the devastating diagnosis of cancer: just under half of these people will die from the disease. There are an estimated 70,000 cancer survivors in Northern Ireland many of whom endure the long-term effects of cancer and treatment. Cancer outcomes in Northern Ireland are on a par with those in some eastern European countries which sadly lack many of the advantages that the United Kingdom enjoys. We are below the best in Europe, Canada, Australia and the United Kingdom. Cancer Focus Northern Ireland is calling for an end to the complacency that accepts this for our citizens.
Almost exactly one year ago, Cancer Focus NI launched its manifesto ‘A fresh Vision for Cancer in Northern Ireland’. The overarching call for a new Cancer Strategy remains as valid today, as it was then. Reflecting on the 2016-17 mandate, the focus by the outgoing Assembly on progressing systemic change, and the need for reconfiguration of Health and Social Care in response to the Expert Panel Report led by Professor Rafael Bengoa, gave hope to many. Also positive was the approach taken in the Programme for Government towards prioritising Wellbeing for the general population. Commitments to addressing health inequalities; increasing healthy life expectancy; investing in public health, as well as for better health outcomes to transcend all Government Departments, are significant steps forward.
However, while attention was understandably on providing solutions at the macro level within health, cancer did not receive the comprehensive review that is so badly needed at a policy level. Establishing objective criteria that can be applied to determine which services need to be reconfigured is a positive step, and is to be welcomed. Yet the process of applying these criteria to cancer is an important next step.
Cancer Focus NI very much welcomes the stated commitment to include service users/carers and those who advocate on their behalf in the co-design of services. We look forward to participating in such a process on Cancer services, we hope under the auspices of a new Cancer Strategy.
I wish to take this opportunity to acknowledge and thank your Party for its contribution in supporting efforts that have been made during the 2016-17 mandate in seeking to reduce the burden of cancer in Northern Ireland. We thank MLAs for their renewed focus on cancer, through their eager participation in the rejuvenated All Party Group on Cancer; in the increased number of Assembly Questions tabled around cancer; and in supporting the gathering momentum towards establishing a new Cancer Strategy here.
Progress has been made. There is, however, still much more work to be done to ensure fewer of our citizens develop cancer and to enhance survival outcomes. The following key facts highlight that we need a more equal society and to care more for those in need:
- Cancer cases are projected to rise considerably – by 2035 they are set to rise by 65% among men to 7,181 and by 63% for women to 6,967
- Cancer waiting times have persistently failed to meet ministerial targets
- Patients in Northern Ireland continue to be denied access to life extending cancer drugs that are available in other parts of the UK
- A number of important public health initiatives have yet to be implemented, including minimum unit pricing of alcohol, and setting a target date to work towards achieving a ‘Tobacco Free Northern Ireland’
- Public awareness of common signs and symptoms of cancer continues to be lower in Northern Ireland than in other developed countries
An Executive Strategy on Cancer should occupy a high priority in the next Assembly term. It should not operate ‘stand-alone’ within Health, rather, it must be regarded as cross-cutting and inform decision-making across all Government Departments, and with a strong commitment to tackling health inequalities. The most effective policies are delivered in close partnership with key stakeholders, and Cancer Focus NI stands ready to assist in ensuring that our people enjoy long, healthy, active lives.
Northern Ireland needs a fresh start, a vision for cancer, including prevention, early detection, research, treatment and care services, with ambition at its core. This is the overarching thrust of the Cancer Focus NI Manifesto. We repeat our calls for a new Cancer Strategy, that comprehensively addresses how cancer services which people depend upon, can be optimised, through a holistic reform process, delivering better outcomes for citizens. This is why Cancer Focus NI invests significant time and energy as the secretariat to the All Party Group on Cancer, and why we take this particular opportunity to present our campaign in the context of Party Manifestos for the 2017 Assembly elections.
This document was developed in conjunction with our colleagues in research, treatment, public health and, of course, patients and their families. We invite all parties to reflect our ambitious vision for cancer in their forthcoming Manifesto for the Assembly elections.
Roisin Foster
Chief Executive
A fresh Vision for Cancer Outcomes in Northern Ireland
Northern Ireland Assembly Manifesto 2017
“England, Scotland and Wales all have up to date cancer strategies, whereas the last Cancer Strategy in Northern Ireland was published in 2008. In the last nine years, there has been a step change both in our understanding of cancer and in how we prevent and treat this deadly disease.
“It is imperative that we develop a modern integrated cancer strategy, informed by research, innovation and best international practice – otherwise we risk undermining the excellent care that our healthcare professionals give under increasingly challenging circumstances to our patients.
“The lack of a strategic vision for cancer and its implementation is not acceptable – we must deliver for the citizens of Northern Ireland.”
-Professor Mark Lawler, Queen’s University Belfast
Cancer Focus Northern Ireland wants cancer incidence rates here to be among the lowest in the world: we want our cancer patients to have among the best outcomes in the world. This is ambitious but we believe our people deserve nothing less. To achieve this Northern Ireland needs a new, ambitious vision for cancer – for cancer prevention and for cancer services. This is our manifesto for the Northern Ireland Assembly Elections 2017.
VISION
A fresh, ambitious vision for Cancer
- Cancer Focus Northern Ireland calls on the new NI Assembly to commit to producing a fresh, ambitious, overarching strategy for cancer services, with clear measurable targets and timescales, sustained funding and patient outcomes at its core.
- We welcome the report of the Expert Panel and the outgoing Minister of Health’s Vision for putting patients first and involving service users in a process of co-design. We believe that meaningful engagement with patients, carers and their representatives is essential for ensuring that the cross-cutting benefits of co-production are identified and maximised.
PREVENTION & DETECTION
To reduce cancer risk and prevalence, Cancer Focus NI commends the 12 evidence-based recommendations of the European Code Against Cancer to the Northern Ireland public.
In particular:
- Cancer Focus NI calls on the NI Executive to establish a target date to achieve a ‘Tobacco-free Northern Ireland’ by 2035.
- Cancer Focus NI calls on the NI Executive to support the implementation in Northern Ireland of the Top Ten Recommendations from “Health First: An evidence-based alcohol strategy for the UK”.
- Cancer Focus NI supports a targeted approach to prioritising interventions around those most deprived and ‘at risk’ communities
- Cancer Focus NI calls for the HPV vaccination programme to be extended to include adolescent boys.
TREATMENT
To improve outcomes for cancer patients, Cancer Focus NI endorses the European Cancer Patients Bill of Rights which calls for accurate information and optimal and timely access to treatment.
In particular:
- Cancer Focus NI calls on the NI Executive to guarantee adequate funding to provide universal access to NICE approved drugs. Furthermore, it is imperative that steps be taken quickly to ensure equal access for patients who can benefit from non-NICE approved drugs
- Cancer Focus NI urges the NI Executive to ensure full compliance with the established Ministerial Targets for Cancer, which are:
- 95% of patients with an urgent referral for suspected cancer to begin treatment within 62 days;
- 98% of patients commencing first treatment within 31 days of the decision to treat being taken;
- 100% of patients with an urgent breast cancer referral being seen within 14 days
- Cancer Focus NI calls for an adequately funded Commissioning Plan as the only way of ensuring better outcomes for cancer patients here. Access to safe, high quality and accessible cancer services is an absolute imperative.
A fresh Vision for Cancer Outcomes in Northern Ireland
Northern Ireland Assembly Manifesto 2017
Supplementary Information
VISION
A fresh, ambitious vision for Cancer
- Cancer Focus Northern Ireland calls on the NI Executive to commit to producing a fresh, overarching strategy for cancer services, with clear measurable targets and timescales, sustained funding and with ambition at its core
With some cancer outcomes in Northern Ireland on a par with some eastern European countries and far behind those in Northern Europe, North American and Australia, a collective, high level approach is required to provide the vision for the cancer services we need to raise our standards over the next five years and beyond. Government should be to the fore in overseeing the compilation of such a strategy, with close collaboration and inputs from researchers, clinicians, health professionals, the voluntary sector and policymakers behind with the central aim of delivering world class services here.
The recently reviewed Cancer Service Framework – while providing an important focus on standard of care – is no substitute for a comprehensive vision and an overarching strategy. In line with the direction recommended by the Expert Panel and endorsed by the Health Minister, a strategic approach to cancer must put patients first and include substantial elements of co-design with service users.
In England, the Report of the Independent Cancer Taskforce, ‘Achieving World-class Cancer Outcomes: A Strategy for England 2015-20’, strikes the right note for citizens there. That Report proposes a strategy that ‘can improve radically the outcomes that the NHS delivers for people affected by cancer’. This is the kind of approach that Northern Ireland must emulate.
We commend NHS England’s 2015 Cancer Strategy which is committed to making cancer services in England ‘World Class’ and vows to help an additional 30,000 people survive for 10 years or more through diagnosing the disease earlier. It includes plans to introduce a four-week target for diagnosis from GP referral by 2020, to replace old radiotherapy machines and increase specialist staff, including specialist nurses. Such clear vision, with ambitious goals, is required to improve outcomes for cancer patients in Northern Ireland.
We ask that a new Cancer Strategy will recognise the importance of improving outcomes by providing additional investment in prevention, diagnosis and treatment, in line with best practice across Europe and further afield. Patients must be involved at every stage of the process to ensure meaningful co-production.
PREVENTION & DETECTION
By 2035 the number of cancer cases per year is projected to be 7,181 male and 6,967 female cases, a 65% rise among men and a 63% rise among women. 1
Central to a strategy to reduce cancer incidence and improve outcomes is a comprehensive strategy for prevention and detection. Cancer Focus NI commends the 12 recommendations of the evidenced-based European Code Against Cancer to the Northern Ireland public. 2
Significant progress has been made during recent administrations. Cancer Focus NI welcomes the Public Health Agency’s ‘Be Cancer Aware’ Campaign that seeks to improve public recognition of the common signs and symptoms of cancer. The Tobacco Retailers Act will prevent more of our young people from taking up smoking by making it more difficult for under 18s to access tobacco products. In addition, the Assembly unanimously voted through a Legislative Consent Motion allowing Northern Ireland to be included in legislation on standardised packaging of tobacco products. This work builds on important legislation brought forward in a previous mandate, including The Sunbed (Northern Ireland) Act (2011), which protects the public from the cancer risks associated with the use of sunbeds, particularly young people.
A recent loss of momentum has, however, resulted in Northern Ireland falling behind other UK regions in measures such as introducing minimum alcohol unit pricing. Our ambitions need also to be raised to eradicate the enormous toll that tobacco places on the wellbeing of our society by establishing a target date for achieving a Tobacco-free Northern Ireland by 2035, as has been committed to by our neighbours in the Republic of Ireland and Scotland. Urgent action is needed to address the health inequalities which result in significantly higher incidence of cancer of the head and neck, oesophagus, stomach, lung, male-colorectal, bladder and cervix among the most socially disadvantaged groups in Northern Ireland. 3 That is why Cancer Focus NI has devoted considerable effort in recent years to providing services to those living in the hardest to reach communities.
With the growing evidence base for the link between alcohol and cancer, and the recent revised guidance on alcohol, Cancer Focus NI calls on the NI Executive to support the implementation in Northern Ireland of the Top Ten Recommendations from “Health First: An evidence-based alcohol strategy for the UK”. This will incorporate a minimum unit price for alcohol, additional measures on alcohol labelling, restrictions on alcohol promotions, and stricter licensing of the sale of alcohol. 4
In order to further reduce cancer risk Cancer Focus NI calls for the HPV vaccination programme to be extended to include adolescent boys. 5
TREATMENT
Cancer remains the single greatest cause of premature death in Northern Ireland. In Northern Ireland we enjoy excellence in cancer research and highly skilled clinicians, nursing and other staff. However, for both males and females the UK countries have lower survival ratios than many other European countries. 6
Within the UK, Northern Ireland survival ratios are lower than England and Wales. Cancer survival in NI, although improving, lags behind that of many countries for lung, breast, colon, rectum and ovarian cancer. 7
In addition, there appears within Government a lack of drive and ambition to identify and address the issues which are impeding world class performance. There appears to be complacency and a willingness to accept a declining service with a failure to set ambitious goals for improvement. Key cancer performance targets are missed month on month. This causes enormous stress for cancer patients or for those waiting to find out if they have cancer.
To improve outcomes for cancer patients, Cancer Focus NI endorses the European Cancer Patients Bill of Rights which calls for accurate information and optimal and timely access to treatment. 8
Cancer Focus NI calls on the NI Executive to guarantee adequate funding to provide universal access to NICE approved drugs. Furthermore, steps must be implemented without further delay to ensure equal access for patients who can benefit from non-NICE approved drugs, acknowledging this latest consultation on access to specialist medicines. While significant progress had been made by the Department in recent years towards funding all NICE approved drugs, the situation has reversed as budgetary pressures have started to bite.
The Equal Access Campaign, led by Cancer Focus NI, supported by 14 other charities with 26,000 pledges from the public, highlighted the inability of Northern Ireland patients to access cancer drugs that were available to patients living in England under the Cancer Drugs Fund. Patients affected by this policy do not have time on their side and the continued delays have caused great distress to patients and family members. We cannot but help contrast how the outgoing Executive was able to find similar amounts of money for other priorities in a much less protracted manner than has been the case in funding enhanced access to specialist medicines.
The persistent and growing failure to meet the Department’s own targets for cancer, a regular feature in the last mandate, is a source of great distress for both cancer patients and those who are waiting for investigations to determine whether they may have cancer.
Cancer Focus NI urges the NI Executive to ensure full compliance with the established Ministerial Targets for Cancer, which are:
- 95% of patients with an urgent referral for suspected cancer to begin treatment within 62 days;
- 98% of patients commencing first treatment within 31 days of the decision to treat being taken;
- 100% of patients with an urgent breast cancer referral being seen within 14 days
WAITING TIMES: September 2016:
- 63.6% of patients with an urgent referral for suspected cancer began treatment within 62 days (official Ministerial Target is 95%)
- 93.7% of patients commenced their first treatment within 31 days of the decision to treat being taken (official Ministerial Target is at least 98%)
- 95.8% of patients with an urgent breast cancer referral seen within 14 days (target is 100%)
- In the Southern Trust, just 12.1% of women with suspected breast cancer (‘red flag’) patients got an appointment with a consultant within the 14 day timeframe in August.
In September 2016, 133 patients waited longer that the 62 day targets. These people were subsequently diagnosed with cancer as follows: urological cancer 41; gastrointestinal cancer 38; skin cancer 26; lung cancer 9; gynaecological cancer 5; breast cancer 4; haematological cancer 3; head and neck 1; and other cancers 6.
Cancer Focus NI calls for an adequately funded Commissioning Plan as the only way of ensuring better outcomes for cancer patients here. Access to safe, high quality and accessible cancer services is an absolute imperative. We ask that a new Cancer Strategy recognises the importance of improving outcomes by providing additional investment in prevention, diagnosis and treatment, in line with best practice across Europe and further afield.
Adequate funding to be allocated for commissioning of cancer services:
The approach taken towards cancer services in recent Commissioning Plans is entirely unsatisfactory. Indeed, this point has been acknowledged by the Commissioners themselves:
- HSC Board Commissioners said the funding shortages for 2015/16 would impact on their ability to secure, ‘safe, high quality and accessible cancer services’ in some areas;
- Reduced access to specialist cancer nurses across Northern Ireland;
- Prescribing and delivering of chemotherapy services will be affected;
- Upper gastrointestinal cancer surgery in Belfast Trust will be affected, alongside pre and post-op care of the disease by expert teams;
- Patients with suspected and confirmed cancers will have reduced access to specialist multidisciplinary teams to discuss diagnosis and treatment options;
- Dedicated disease tests that give the best treatment choices will be less accessible;
- “Spiralling waiting times could lead to severely delayed diagnoses of life threatening illnesses, with suspected bowel cancer patients particularly at risk”;
- “Such delays for assessment and treatment are very significant…it is possible that in some cases, increased waiting times for assessment may result in a delayed diagnosis of a serious or life-threatening condition with reduced likelihood of a successful outcome”
We reiterate that in order to reduce the burden that cancer places on our society, we are looking to the NI Assembly to develop an ambitious vision for cancer services and manage its full implementation through an adequately funded commissioning plan.
We ask you to join with Cancer Focus NI in supporting the case for a new Cancer Strategy
