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.

Five ways we can support people at end of life


Here at Macmillan, we’re supporting Dying Matters Awareness Week (8th-14th May). It’s an important opportunity to talk about dying, death and bereavement and how we can support people in such times of need.

This year’s Awareness Week poses the question ‘What Can You Do?’

We know that everyone dying from cancer will have different experiences at different times. Reaching the end of life can be very difficult and may create many practical and emotional issues for those affected to work through.

Our focus is on making sure the right care is in place so everyone’s individual needs can be met.

Let’s look at what Macmillan can do right now for people who are nearing the end of their life.

  1. We can help people to find practical and emotional support at the end of life and through bereavement

Our Information and Support Services provide people with face-to-face assistance in every Trust’s cancer units. We also have free information and advice available online, through our Macmillan Support Line, in public libraries and elsewhere in communities.

  1. We can help our Macmillan Professionals develop the skills needed to provide high quality care

Having the right cancer workforce in place is a priority for Macmillan and we have more than 170 professionals working in hospitals and communities across NI. Many are directly responsible for providing end of life care and support to people affected by cancer. Some examples are our specialist palliative care nurses, GPs and various Allied Health Professionals. All our healthcare professionals are provided with opportunities to learn more about how to meet the needs of people affected by cancer at different stages.

  1. We can enable more people to use Advance Care Planning to record their wishes about how they receive care

Having an Advance Care Plan means that health and social care professionals will know what’s important to the individual and can make appropriate decisions. We have worked with the Public Health Agency to create ‘Your life and choices: plan ahead’ which is a booklet full of information on how to record your wishes.

  1. We can use our Community Palliative Pharmacy Project to help more people at the end of life stage to cope at home

This two-year project is underway right across NI. We have a Service Improvement Pharmacist in every Health and Social Care Trust, liaising with staff across the whole area including community pharmacies. This helps to ensure they have the right stock and training to address any issues. The project also aims for better quality of life for people receiving end of life care by avoiding unnecessary hospital admissions. We know that care at home is what most people would prefer and will continue seek new ways to make this possible.

  1. We can influence wider work to improve palliative and end of life care

Macmillan contributed to the development and implementation of the Department of Health’s Living Matters, Dying Matters strategy (2010-15). This is the most significant policy relating to end of life care to be created in NI in recent years. We now want to see new policy developments for ongoing progress in end of life care and patient experience. We are calling for a new dedicated cancer strategy for NI, including improvements in the quality and availability of personalised end of life care.

We know that too many people still lack access to appropriate end of life care and support. Right now, cancer is the cause of more than 1 in 4 deaths in NI. With more people being diagnosed than ever before, the need for high quality, personalised care will increase.

No matter which party takes responsibility for health and social care when the current political uncertainty ends, there’s no doubt that dying matters. Palliative and end of life care must remain high on the agenda and strategic decisions will be needed to ensure the right services are in place in the future.

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.

Why I’m supporting Macmillan’s ‘Time to Deliver’ campaign

Madeleine speaking best.jpgMadeleine Coyle from Prehen in Derry is supporting Macmillan’s campaign for a Cancer Strategy for Northern Ireland.

When I was admitted to Altnagelvin Area Hospital in January 2013, suffering from pneumonia, little did I know that I had developed lung cancer.  Tests revealed that the disease was at an early stage.  I had to undergo surgery but was told I wouldn’t need follow-up chemotherapy or radiotherapy.

I was lucky.

During the course of my treatment, I received help from the Macmillan/North West Advice Service and their team of benefits advisors based in the Sperrin Unit within Altnagelvin Hospital.  Lisa, one of their advisers, sent me details of the different welfare payments I could claim and even helped me fill out all the forms.

I never expected to get help with benefit claim forms.  I didn’t know the service existed.  That’s why it’s so important to have support services in hospitals but you do need access to information and support in your local area too.

That’s why I’m supporting Macmillan’s ‘Time to Deliver’ campaign for a cancer strategy for Northern Ireland.  England, Scotland and Wales already have cancer plans in place which cover prevention, diagnosis, treatment, recovery and palliative and end of life care – all the stages of the cancer journey.

With more and more of us being diagnosed with cancer and living longer with the disease and the long term consequences of treatment, we need to ensure that any cancer strategy for Northern Ireland addresses the needs of people living with cancer after their treatment has ended.

You can support the campaign too. Just use Macmillan’s email template to contact the Health Minister to say you want to see cancer care become a priority in the new Programme for Government.

Click here to email the Health Minister using the template.

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.


Move More NI is up and running


Macmillan’s Heather Monteverde, boxer Michael Conlon and Sports Minister Paul Givan at Titanic Belfast to launch Move More

Macmillan is delighted to have launched the Move More programme, a new initiative aiming to help people living with cancer in Northern Ireland to benefit from physical activity as a part of a healthy lifestyle.

So far schemes in Antrim & Newtownabbey and Ards & North Down are underway, involving an individually-tailored programme of physical activity. The service consists of 11 projects, meaning people in every council area can be supported to become and stay active at level that’s right for them.

Three more schemes are set to be rolled out by the end of 2016, in Belfast City Council, Armagh, Banbridge & Craigavon council and Lisburn & Castlereagh areas. Macmillan will continue to work with district councils, Health and Social Care Trusts and physical activity providers to ensure Move More is established right across Northern Ireland.

A growing body of evidence shows physical activity can play a vital role in helping to prevent cancer recurrence,  reduce the spread of the disease and slow disease progression as well as mitigating side effects and consequences of treatment such as fatigue.

Speaking at the launch in Titanic Belfast, Professor Jane Maher, Joint Chief Medical Officer at Macmillan Cancer Support said: “We want to see physical activity play a much more prominent role during both treatment and recovery, and it is great to see that people affected by cancer in Northern Ireland now have the opportunity to benefit.”

Take five minutes with our video and find out how people living with cancer are already feeling the benefits of Move More schemes. Click here to visit our YouTube page.

Exciting times at Altnagelvin

Tara Boyle is the Macmillan Capital Project Manager for the new health and wellbeing campus at Altnagelvin, incorporating the new Macmillan Support Centre.

Paula, Tara & Andy close up

(Pictured L-R: Macmillan’s Paula Kealey, Tara Boyle and Andy from TAL).

It’s exciting times at Altnagelvin because the roof is on and the new Macmillan Support Centre is really taking shape.

As the Capital Project Manager, I’ve been working closely with the Macmillan design team right from the word go.  I’m responsible for keeping everything within budget and on schedule so I spend a lot of my time monitoring progress on site in my hard hat and checking in with Andy and the construction crew from TAL.

 The new health and wellbeing campus is being built on the perimeter of the Altnagelvin hospital site and will incorporate Agnes Jones House, a beautiful turn-of-the century building.  Thanks to the Western Health and Social Care Trust, Agnes Jones is being refurbished and will house facilities for people with long term conditions.  The two buildings, old and new, will be linked by a landscaped courtyard.

The new campus – the first of its kind in Northern Ireland – is still a building site and very much a work in progress.  No sign of a garden yet. But you can take a virtual tour by viewing our digital fly through here.

Visitors to the Macmillan Support Centre will enter into a bright, welcoming and relaxing environment.  The central reception area will provide easy access to all the facilities.

There will be a library leading into a large communal lounge, which has access to an outdoor space – offering privacy and calm.

In addition to bright and open public spaces, there will be a dedicated suite of rooms where individuals can receive counselling, benefits advice, wig and prosthesis fitting, or complementary therapies.

And we’ve made sure there’s a larger room for group activities such as art therapy, gentle exercise classes, support group meetings and training sessions for volunteers and staff.

The Macmillan Support Centre has been designed with input from people affected by cancer.  I really feel privileged to be doing this job because I know the real difference that the centre and new campus will make to the lives of people affected by cancer and other long term conditions.

It’s been fascinating to be part of every stage of development – from the drawing board to the construction site.

I can’t wait for the finished product and to welcome visitors through those doors.