Northern Ireland's Election Manifesto

We wrote a manifesto explaining how our election calls can lead to better experiences and outcomes for people living with cancer in Northern Ireland.

We called on the new NI Assembly to take action on the reviewed Cancer Services Framework, which will set the standards for services in the coming years.

All political parties elected in May 2016 now have the opportunity to make cancer a number one priority and commit to ensuring that everyone living with cancer has access to high quality care.

Read our manifesto below, or download it here [PDF, 10.28 Mb].

Introduction

We are calling for the Northern Ireland Assembly to implement the reviewed Cancer Services Framework and deliver high quality, person-centred care to everyone facing a cancer diagnosis.

  • Every day 30people in Northern Ireland hear the devastating news that they have cancer. There are currently around 63,000 people living with cancer in the region.1
  • We know that by 2020, almost 1 in 2 people (47%) will get cancer in their lifetime, but almost 4 in 10 (38%) will not die from the disease.2
  • Each year over 4,000 people die as a result of the disease. This equals more than 1 in 4 of all deaths in Northern Ireland.3
  • So, by 2030, the number of people in Northern Ireland living with cancer and the long term consequences of their condition and treatment is expected to rise to over 110,000.1

The story of cancer is changing. More people than ever before can expect to receive a diagnosis in their lifetime. At the same time, advances in diagnosis and treatment mean that more people are living with and surviving beyond cancer. The challenge to government, health services and partners is to respond with the best possible use of resources.

Doing nothing is not an option – it is time to choose innovation, transformation and partnership working. Traditional approaches to cancer care must change to meet current and future demand, as well as catering for the needs of people with more than one condition.

We know that health and social care services in Northern Ireland are under pressure to do more with less. We must continue to work together – government, providers and charities, guided by the voice of patients – to ensure high quality care for people in active treatment, surviving after cancer and those approaching end of life.

Macmillan Cancer Support believes that everyone living with cancer – regardless of where they live, the type of cancer they have, or the hospital they attend for treatment – should have equal access to high quality care.

We hope that all political parties in Northern Ireland will commit to making cancer care a priority by supporting our manifesto calls.

Gary's story

Promote the use of Advance Care Planning to help more people approaching end of life with cancer to be involved in decisions about their care.

Gary's story

Promote the use of Advance Care Planning to help more people approaching end of life with cancer to be involved in decisions about their care.


1. Equal access to Clinical Nurse Specialists

Everyone newly diagnosed with cancer should have access to a Clinical Nurse Specialist (CNS).

At present breast cancer patients and most patients with lung cancer have access. But there are considerable variations in CNS provision for those diagnosed with different cancer types and across different Health Trusts.

The Cancer Patient Experience Survey shows that patients with a CNS are much more positive about the care and support they receive – but more than 1 in 4 miss out.

Despite previous commitments to improve access for all patients, the workforce census in 2014 revealed that NI had the lowest provision in the UK.

Macmillan is concerned that plans to increase CNS numbers in Northern Ireland could be affected by future budgetary constraints.

Macmillan is calling on the Northern Ireland Assembly to:

Use investment and planning to address longstanding gaps in the Clinical Nurse Specialist workforce to ensure equal access for everyone diagnosed with cancer.

The critical role of the CNS

Clinical Nurse Specialists play a vital role in improving the quality and experience of care for patients throughout their cancer journey. They treat and manage the health concerns of patients and work to promote health and wellbeing in the patients they care for. They use their skills and expertise in cancer care to provide physical and emotional support. They coordinate care services and inform and advise patients on clinical as well as practical issues, leading to positive patient outcomes.4

The CNS role has been at the heart of the Transforming Cancer Follow Up programme, on which Macmillan has been working with the Health and Social Care Board, the Public Health Agency and Northern Ireland Cancer Network. This initiatve was designed to change the way cancer aftercare services are delivered, both within the hospital setting and the local community.

The CNS acts as the first point of contact, working closely with patients and clinical colleagues to respond to patients’ emerging needs. This has reduced unplanned care, as well as giving patients who are no longer in active treatment rapid access to acute services, if they need it.

Now, more than ever, the specialist workforce has a vital role to play in delivering high-quality, compassionate and person-centred care. This includes providing care closer to home and supporting a drive for efficiency, while improving health outcomes and maximising resources. These aims are in line with Department of Health’s ongoing reforms in Transforming Your Care.

What patients say about their CNS

In 2015, we worked with the Public Health Agency to carry out Northern Ireland’s first ever Cancer Patient Experience Survey. The survey asked 79 questions and gathered the views of more than 3,200 patients across all five Health and Social Care Trusts.

The findings are a powerful endorsement of the value of the CNS role to patients:

  • More than 1 in 4 (28%) patients in Northern Ireland report having no CNS access.
    One in four patients report having no CNS access
    One in four patients report having no CNS access

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  • Having a CNS is the most important factor driving positive responses from patients in every tumour group. The overall rating of care by patients is 9% lower among those with no CNS. 
    The overall rating of care by patients is 9% lower among those with no CNS
    The overall rating of care by patients is 9% lower among those with no CNS

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  • Patients’ access to information at key stages of the cancer pathway – about support or self-help groups, the impact of cancer on work or education, and how to get financial help – is 30-34% lower among those without a CNS.5
    Patients' access to information at key stages of the cancer pathway is 30-34% lower among those without a CNS
    Patients' access to information at key stages of the cancer pathway is 30-34% lower among those without a CNS

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'Consultant oncologists aren’t available at the drop of a hat. You may only see them once a year. The rest of the time I know that, if I have any concerns, I can phone my CNS and she’ll talk things through or get things rolling.' Roy, Derry

Having a CNS is the most important factor driving positive responses from patients in every tumour group. Similar surveys in England and Wales have also consistently shown this to be the case.

The CNS workforce in Northern Ireland

At the time of the last Northern Ireland Assembly Election in 2011, there was cross-party support for an increase in CNS numbers to ensure that everyone newly diagnosed with cancer had access to one. The intervening years have seen a minimal rise in specialist adult cancer nurses numbers.

In 2014, a census of the adult cancer CNS workforce found that 30% of nurses are aged 50 or over and are therefore likely to retire within 5-10 years. Planning is essential if an increase in the number of specialist nurses is to be achieved.6

The HSCB Commissioning Plan 2015/16 has indicated that plans to increase the number of CNSs could be impacted by the current financial position.7

We strongly believe that an increase in the CNS workforce should be pursued as a priority, both to improve cancer care across Northern Ireland and to increase value for money within cancer services. CNSs have been shown to reduce emergency admissions, the length of hospital stay, the number of follow-up appointments and the number of medical consultations.4

We want all political parties in Northern Ireland to renew their commitment to making sure fewer and fewer people face cancer without specialist care and support.

'Any questions I had or any concerns were certainly answered quickly and promptly.' - Raymond Bothwell, Ballynahinch

Gary, Comber

Raymond's story

Raymond Bothwell from Ballynahinch was diagnosed with oral cancer five years ago and was helped through his treatment by his Macmillan Clinical Nurse Specialist.

Raymond's story

Raymond Bothwell from Ballynahinch was diagnosed with oral cancer five years ago and was helped through his treatment by his Macmillan Clinical Nurse Specialist.


2. Person-centred care: Supporting people living with and beyond cancer

Person-centred care can greatly improve outcomes for people living with and beyond cancer.

We need a system based on health and wellbeing – not just physical symptoms and illness.

Every person with cancer should receive personalised care following a holistic needs assessment and written care plan.

We need to improve access to information and support to help people access financial advice, remain in work and enjoy the benefits of physical activity.

Implementing the Recovery Package can help people to lead a healthy lifestyle and manage the long-term side effects of cancer and its treatments.

Macmillan is calling on the Northern Ireland Assembly to:

Deliver a Recovery Package to ensure person-centred care during and after cancer treatment, to meet the needs of individual patients and achieve outcomes matching the best in Europe.

Living with and beyond cancer

  • 1 in 4 people who have been treated for cancer live with ill-health or disability as a consequence of their treatment.8
    1 in 4 live with ill-health or disability after treatment.
    1 in 4 live with ill-health or disability after treatment.

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  • 1 in 8 people diagnosed up to five years previously say they experience moderate to extreme anxiety or depression.8
    1 in 8 people diagnosed up to five years previously say they experience moderate to extreme anxiety or depression.
    1 in 8 people diagnosed up to five years previously say they experience moderate to extreme anxiety or depression.

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Cancer follow up services have traditionally been designed to address an acute illness. But higher numbers of survivors have brought about the need to transform how these services care for people.

This means moving away from the emphasis on acute and episodic care towards a personalised approach that is well coordinated and integrated. Cancer treatment is often invasive and can have both short and longer term consequences, some of which may arise years after treatment.

Cancer care in Northern Ireland today

The Cancer Patient Experience Survey findings(5) show that services can and must do more to ensure that patients receive well coordinated care to address the social, emotional, practical and financial impact of their cancer:

  • Only 21% were offered a written assessment and care plan.
  • 1 in 10 were not always treated with dignity and respect and almost 1 in 5 felt they were treated like a set of symptoms.
  • 1 in 3 were not offered information on how to get financial help or benefits advice but would have liked some.
  • 1 in 4 were not offered information on the possible impact of cancer on their work life or education but would have liked some.

The consultation appointment is a distressing time and so many cancer patients forget most of the information given to them. Access to the right written information at the right time can reduce anxiety, increase patients’ involvement in decisions about their care and help them manage their condition.

Every person diagnosed and having treatment for cancer should receive high quality and easily understood information, tailored to their changing needs.

'Learning to self-manage your condition and getting help – whether it be information, benefits advice, counselling or access to exercise classes and patient support groups - is so important when you’re on the road to recovery.' – Bronagh, Strabane

'Learning to self-manage your condition and getting help...is so important when you’re on the road to recovery.' – Bronagh, Strabane

– Bronagh, Strabane


How the ‘Recovery Package’ helps people to live well after a cancer diagnosis

People with cancer require support from diagnosis onwards. Key objectives of Transforming Cancer Follow Up included providing tailored information, guidance on lifestyle changes for health and wellbeing and helping patients to manage their condition. These steps are all part of the ‘Recovery Package’ and, when delivered together, can greatly improve outcomes for people living with and beyond cancer.

Work is underway to review the NI Cancer Services Framework. These interventions are expected to be recognised in the key principles for improving patients’ quality of life after treatment.

We want all political parties in Northern Ireland to commit to making sure the ‘Recovery Package’ is available to every patient progressing through and beyond treatment for cancer.

The recovery package
The recovery package

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Holistic needs assessment (HNA) – this identifies the individual needs of the person affected by cancer – physical, practical, emotional and spiritual. The consultation can then focus on the needs identified and a written care plan can be developed, with referrals to appropriate services. The patient receives a copy of the care plan to enable self management; further copies are stored in the medical records and can be sent to the GP.

Treatment summary – this is developed by the multidisciplinary team to inform the patient and their GP of the care and treatment received. The patient receives a copy to share with other family members and health care providers. Further copies are stored in the medical records and inform unplanned interactions with health professionals.

Cancer care review – carried out by the GP practice within six months following a diagnosis of cancer, this gives information to help the patient manage their condition.

Health and Wellbeing Clinics – these education events give the person affected by cancer the information they need to enable rehabilitation. This includes signs and symptoms of recurrence and promotes a healthy lifestyle and physical activity to help overcome the effects of cancer. Evidence shows that physical activity after treatment can reduce the impact of side effects such as anxiety, depression, fatigue, impaired mobility and weight changes.9

Madeleine's story

After being diagnosed with lung cancer, Madeleine Coyle found a weight was lifted off her shoulders -thanks to the advice she received from a Macmillan Benefits Adviser.

Madeleine's story

After being diagnosed with lung cancer, Madeleine Coyle found a weight was lifted off her shoulders -thanks to the advice she received from a Macmillan Benefits Adviser.


3. Advance Care Planning at End of Life

People with cancer approaching end of life should be encouraged to use Advance Care Planning.

This allows people to shape their future health and social care: where it’s delivered, who can make decisions on their behalf, or what they want to know about their condition.

Planning for future care is important in case a person living with cancer becomes unable to make choices themselves.

The process helps to reduce uncertainly and anxiety for the families and carers of people with terminal cancer.

Patients who discuss and record their preferences are more likely to be cared for and die in the place they choose.

Macmillan is calling on the Northern Ireland Assembly to:

Promote the use of Advance Care Planning to help more people approaching end of life with cancer to be involved in decisions about their care.

Cancer care at end of life

Cancer remains the most common cause of death in Northern Ireland – each year over 4,000 people die as a result of the disease, equalling more than 1 in 4 of all deaths in the region.

Macmillan’s vision is that people who are nearing the end of their life will be supported to make decisions that allow them and their family or carers to be prepared for their death. Their care will be well coordinated and planned, with their wishes taken into consideration.

How does Advance Care Planning work and why is it needed?

Advance Care Planning (ACP) is a voluntary process involving an individual, those close to them and their care provider. It focuses on establishing a person’s wishes around care at end of life and usually takes place as their condition deteriorates.

'As I become less well, I want my wife to be involved in making decisions about my care and I want to be fully informed about what’s happening to me.' - Gary, Comber

Patients who wish to use ACP can have a discussion with their health and social care key worker and GP, and have someone there with them. This should happen as soon as a patient’s condition is anticipated to cause the loss of mental capacity or the ability to communicate effectively.

The patient may then want an Advance Statement. This details the type of treatment they would want or not want, and how and where they wish to be cared for. It can also be reviewed with the patient regularly or as their condition changes.

Making plans in advance means that the person is more likely to get the care that's right for them. It also means that people are more likely to avoid unnecessary admissions to hospital. The process can promote important discussions with family members, make treatment decisions easier for their family and help to avoid disagreements. Families will feel confident that they know what the person’s wishes are and that they can help to make sure they are carried out.

'Talking about future care can be a difficult conversation to have but thinking about an advance care plan allows your wishes to be discussed with health care professionals. Remember: people can change their minds at any point. An advance care plan is nothing to be scared about. It puts you, the patient, in control.' - Gerry Millar, Macmillan GP Advisor

Best use of ACP requires health professionals to be trained to communicate effectively and be aware that patients who avail of the process often refuse when it is first suggested.

We want all political parties in Northern Ireland to commit to helping more people to be cared for and to die in their place of choice, by promoting the use of Advance Care Planning.

We have teamed up with the Public Health Agency to produce  Your Life and Your Choices booklet which explains how you can plan ahead for your future care. 


Evelyn, stands on a beach taking a photograph on a camera.

Evelyn's story

Evelyn, from Portstewart, discusses the importance of planning ahead after finding out her cancer was terminal.

Evelyn's story

Evelyn, from Portstewart, discusses the importance of planning ahead after finding out her cancer was terminal.


References

1  Macmillan Cancer Support. Prevalence by nation in the UK at the end of 2010 by applying rates for the UK by age from Maddams J, Utley M, Møller H. Projections of cancer prevalence in the United Kingdom, 2010-2040. Br J Cancer 2012; 107: 1195-1202 to population projections from Office for National Statistics. National Population Projections 2010 based. Available from: http://www.ons.gov.uk/ons/publications/re-reference-tables.html?edition=tcm%3A77-229866.

2 Cancer Mortality Trends: 1992-2020, Macmillan Cancer Support (2015)

3 N. Ireland - Northern Ireland Cancer Registry. Online Statistics [accessed October 2015]. Available from: http://www.qub.ac.uk/research-centres/nicr/CancerData/OnlineStatistics/


4 Excellence in Cancer Care: The Contribution of the Clinical Nurse Specialist. National Cancer Action Team. National Cancer Action Team. Available from: 

http://www.macmillan.org.uk/Documents/AboutUs/Commissioners/ExcellenceinCancerCaretheContributionoftheClinicalNurseSpecialist.pdf

Northern Ireland Cancer Patient Experience Survey 2015: Methodology and Data Tables Supplement. Quality Health. Available from: https://www.quality-health.co.uk/resources/surveys/northern-ireland-cancer-patient-experience-survey/northern-ireland-cancer-patient-experience-survey-1/2015-northern-ireland-cancer-patient-experience-survey/northern-ireland-cancer-patient-experience-survey-reports/696-2015-ni-cancer-patient-experience-survey-methodology-data-tables/file

Specialist adult cancer nurses in Northern Ireland. Mouchel. Available from: http://www.macmillan.org.uk/Documents/AboutUs/Research/Researchandevaluationreports/Macmillan-Census-Report-Northernireland.pdf

Commissioning Plan 2015/16. Health and Social Care Board. Available from: http://www.hscboard.hscni.net/lnews/Commissioning%20Plan%202015-16%20PDF%204MB.PDF

‘Cured – but at what cost?’ Macmillan Cancer Support (2013)

‘Move More: Physical activity the underrated ‘wonder drug.’ Macmillan Cancer Support (2011)

'An advance care plan is nothing to be scared about. It puts you, the patient, in control.' - Gerry Millar, Macmillan GP Advisor

Gerry Millar, Macmillan GP Advisor