What can the next NI Assembly do for people living with cancer?

Michael Moore is Policy Officer at Macmillan Cancer Support

In a matter of weeks, the Assembly election outcome will be known and elected MLAs will be contemplating their priorities for the next five years. The numbers, needs and experiences of people affected by cancer in Northern Ireland make a powerful case for cancer care remaining high on the agenda.

We want to see all parties in government working together – along with Health and Social Care providers and charities – to fully implement the new Cancer Services Framework during the next mandate. This would be a significant step towards delivering high quality, person-centred care to everyone facing a cancer diagnosis.

Our priorities include the specialist cancer nursing workforce and rolling out a package of care and support to help people live well after during and after treatment. We also hope the Assembly will champion advance care plans to ensure that people approaching end of life with cancer receive the care that’s right for them.

The changing story of cancer

It’s estimated that more than 63,000 people are now living with cancer in Northern Ireland. The number is expected to be above 74,000 when the next Assembly mandate ends in 2021. Our ageing population is a major contributing factor in more people being diagnosed with the disease, while earlier diagnosis and more effective treatments mean that a significant number of patients will eventually die from other causes.

Better survival rates are undoubtedly cause for celebration, but the consequences of cancer and its treatment can be devastating. Those undergoing treatment may face a wide range of medical, emotional, financial and practical needs, which can last for years. The need for government to lead an approach that supports people to live well from diagnosis onwards is now greater than ever before.

The physical consequences which can follow cancer treatment range from general fatigue to much more severe conditions such as osteoporosis, lymphoedema, heart failure and chronic pain. 1 in 4 people who have been treated for cancer live with ill-health or disability as a consequence. 1 in 8 people diagnosed up to five years previously say they experience moderate to extreme anxiety or depression, which is often linked to fear of recurrence.

Our research in 2013 found that 3 in 4 people with cancer in NI find themselves financially worse off following diagnosis, by nearly £300 on average. Reduced incomes, higher fuel bills and travel to and from hospital for treatment all contribute to financial hardship experienced by many households affected by cancer.

In recent years, Macmillan has worked in partnership with the Health and Social Care Board, Trusts, Public Health Agency and Northern Ireland Cancer Network to deliver the Transforming Cancer Follow Up (TCFU) programme as a new model for breast cancer follow up care. At the programme’s outset, key objectives included providing information tailored to patients’ needs, guidance on lifestyle changes to maximise health and wellbeing and signposting to services in support of self-management. These interventions are part of the ‘Recovery Package’ and, when delivered together, can greatly improve outcomes for people living with and beyond cancer.

This approach reflects some of the most important aspects of DHSSPS’s Transforming Your Care review and the Donaldson Report – person-centred care, self-management and providing care and support as close to home as is possible in each individual case. As the cancer population increases, political leadership must support moves towards a system based on health and wellbeing rather than just physical symptoms and illness.

Amplifying the patient voice

We know that patients here tend to rate their care highly, but some worrying variations exist. Last year over 3,200 people responded to Northern Ireland’s first ever Cancer Patient Experience Survey. The findings contained some of the best levels of patient experience in the UK, but also indicated clear room for improvement.

As in similar surveys in England and Wales, scores are significantly better among patients who have access to a Clinical Nurse Specialist (CNS) during treatment and care. More than 1 in 4 people reported having no CNS access. They rate overall care 9% lower than those with a CNS, but this gap is over 30% in some important areas such as access to information and support.

Macmillan NI has been campaigning for an increase in the CNS workforce. Evidence shows specialist nurses have a vital role to play in delivering high quality, compassionate and person-centred care. In line with Transforming Your Care, this includes providing efficient and effective care closer to home, while improving health outcomes.

The previous Cancer Services Framework, published in 2011, set a standard of all patients having CNS access throughout their journey. We want to see the number of posts rise significantly during the next Assembly mandate.

Personalised end of life care

Although survival has improved, 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.

We want all parties to commit to helping more people to be involved in decisions about their end of life care, by promoting the use of Advance Care Planning (ACP). This process lets patients discuss their care preferences with their health and social care key worker and GP, and have them recorded.

Making plans in advance means that people are more likely to avoid unnecessary admissions to hospital. The process can also promote important discussions with family members, make treatment decisions easier for their family and help to avoid disagreements.

Many patients who use ACP do so after initially rejecting the idea. It requires health professionals to be trained to communicate effectively and sensitively. Talking about future care can be a difficult discussion for anyone to have, so our political representatives can play a key role by promoting the benefits to their constituents.

The cancer challenge is among the biggest facing our health services. We are hopeful that the work of the next Assembly will be underpinned by a commitment to ensuring high quality care is delivered to everyone living with cancer – regardless of where they live, the type of cancer they have or the hospital they attend for treatment.

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