Category Archives: Policy

Positive patient experience helps people to live with cancer

Improving how cancer patients experience treatment and care is one of Macmillan’s top priorities.

Our latest report, The C-word [PDF 2.9MB], has revealed that 90% of people with cancer say they are still living their lives as normally as they can. As the report states, this starts with them having a positive experience of care from diagnosis onwards.

Knowing what patients think about the care they’ve received has important benefits. Statistics about waiting times, stage at diagnosis and survival rates can all show how well the healthcare system is addressing cancer as a medical condition. But measuring patient experience gives us a distinct perspective on how effectively services are meeting people’s individual needs.

For 1 in 10 people in the UK, cancer is their biggest fear. It is described as ‘the worst news imaginable’ by around half of those diagnosed.  By understanding their experience as they move through the system, we can find ways for services to develop, adapt and reduce the impact of cancer.

That’s why Macmillan has worked to establish a Cancer Patient Experience Survey (CPES) in each UK nation. Questions include how patients were told they had cancer, what information they received about their condition and available support, if they felt involved in decisions and what sort of care they received after leaving hospital. These important aspects of care all contribute to better outcomes.

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In Northern Ireland, the first CPES took place in 2015 and found that 92% of patients rated their overall care highly. Specific questions resulted in some significant variations among cancer types, but the overall picture is very encouraging and the new evidence will help to address gaps. We hope the survey will be repeated in 2018.

It’s clear how far cancer services have come, but demand has increased to the point where any slowing of progress could lead to worsening outcomes. In the UK, there are now around 360,000 new cancer diagnoses each year, outnumbering weddings by more than 70,000. Compared to a generation ago, people with cancer are now twice as likely to survive at least 10 years after being diagnosed.

Some key steps must be taken to uphold and improve levels of patient experience throughout the cancer journey. We need to see ongoing investment to transform healthcare and ensure services are suitable now and into the future.

In addition, Northern Ireland remains the only part of the UK and Ireland without a current strategy for cancer services. Without this, we risk limiting the impact of public spending on cancer care and failing to invest adequately in new developments.

Ultimately, we must continue to enable people with cancer to live the life they want to live.

We can’t press pause on cancer care during political crisis

More people in Northern Ireland are living with cancer than ever before. This number continues to rise and is expected to reach 74,000 by 2020. Already too many people face cancer without the care and support they need to live well during and after treatment.

Macmillan invested more than £6million in the development and delivery of cancer services in Northern Ireland during 2016. We hope to see political stability return as soon as possible to ensure urgent improvements to cancer care can continue.

The collapse of the Northern Ireland Executive and the announcement of an election at the beginning of March has created much uncertainty. No budget has been agreed for government departments to deliver vital services throughout the year. Without political leadership, the important ongoing reforms in health and social care could be disrupted.

Responsibility for health and social care is entirely devolved, meaning that the NI Assembly must take key decisions. People facing a cancer diagnosis need parties to work together at Stormont, ensuring the best possible use of resources to meet the growing demand in a sustainable way.

That’s why we have been working hard since the last election in May 2016 to ensure that cancer care remains firmly on the agenda:

  • We wrote to every new Member of the Legislative Assembly (MLA) to provide an overview of our work in NI.
  • We met with MLAs who sit on the Health Committee and speak for their parties on healthcare issues.
  • We attended party conferences to get our message across to more representatives.
  • We sent briefings to make sure MLAs were aware of key issues ahead of an Assembly debate on cancer services.
  • We welcomed the Health Minister’s publication of the Expert Panel Report and ‘Health and Wellbeing 2026: Delivering Together’ and offered our continuing support to improve cancer care.
  • We launched our ‘Time to Deliver’ campaign to call on the Health Minister and the Committee for Health to work towards a new dedicated cancer strategy. We also responded to the draft Programme for Government to detail why a cancer strategy is needed and to outline steps for achieving high quality care for everyone diagnosed with cancer. (Download our Programme for Government response)
  • We held an event at Stormont to celebrate Macmillan nurses and promote their invaluable work to deliver and improve the support available for people living with cancer.

Macmillan is working to ensure that everyone living with cancer in Northern Ireland will receive high quality clinical treatment and person-centred care throughout their cancer journey – wherever they live, whatever type of cancer they have and whatever hospital they attend for treatment.

Cancer care has come a long way in recent years, but there is still clear room for improvement. We want to see a strategic approach to ensuring that everyone diagnosed with cancer receives the right care at each stage of the cancer journey.

We will continue to keep a close eye on developments and take all opportunities to bring the voice of people affected cancer to candidates and all who are elected in March.

Cancer services can improve under bold transformation plans

Macmillan Cancer Support welcomes the Health Minister’s joint publication of the Expert Panel Report, ‘Systems, Not Structures’ and the ten year strategic vision, ‘Health and Wellbeing 2026: Delivering Together’. As the cancer story changes, a dedicated strategy is needed to ensure services can meet current and future demand. We look forward to building on our strong track record of working in partnership with government and Health and Social Care to transform how services are delivered.

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

Already too many people are facing cancer without the right support to meet their needs. We know that people having cancer treatment in Northern Ireland rate their overall care highly. But variations throughout the region and across different tumour groups show gaps in care which will worsen unless they are urgently addressed.

Around 63,000 people are living with and beyond cancer in Northern Ireland. By 2030, this is expected to rise to over 110,000. Cancer is increasingly becoming a long term condition and we know that a majority of people diagnosed with cancer also have at least one other chronic illness.

People with cancer need practical, emotional and financial support from diagnosis onwards, to help them live well and cope with any long term consequences. That’s why our ‘Time to Choose 2016’ manifesto acknowledged that making the best use of the health budget would be one of the biggest challenges facing the new NI Executive.

We argued that “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 are greatly encouraged by the Minister’s commitment to transforming the health service and ensuring that it helps people to stay well. Actions such as investing in primary care, maximising the potential of community pharmacy services and reforming social care and support can all contribute to better cancer care and improved outcomes.

Each of these is a step towards empowering people living with cancer to live well and manage their own condition through support in the community. It is vital that further changes are guided by the voice of patients and the expertise of Health and Social Care professionals.

The Expert Panel has recognised Transforming Cancer Follow Up (TCFU) as an example of good practice which can improve outcomes. We are delighted that TCFU is currently being implemented in cancer services across Northern Ireland and for a range of different cancer types. As the report states, TCFU is a strategic partnership between Macmillan, government and health professionals – but its development can be traced back to a patient workshop in 2009. People affected by cancer are experts by experience, and provide key messages about how to improve the system.

We believe cancer services will continue to change and improve as part of the Minister’s vision for transformation. We want the inequalities in cancer care to be tackled through the development and implementation of a cancer strategy that can meet the changing needs of the population. People living with cancer cannot afford to wait.