We work with the Northern Ireland Assembly

The story of cancer is changing. More people than ever before are being diagnosed in Northern Ireland.

Earlier detection and better treatments have greatly increased the numbers living with cancer as a long-term condition. Services designed to provide care and support must continue to improve, in order to meet the rising demand and help people to live well during and after cancer treatment.

Macmillan supports the ongoing reforms and modernisation of health and social care that have been driven by the Assembly in recent years, but more needs to be done to achieve the best possible outcomes for patients.

Transforming Cancer Follow Up (TCFU) Programme

During the previous Assembly mandate, Macmillan worked with the Health and Social Care Board, the Public Health Agency and the Northern Ireland Cancer Network to develop the Transforming Cancer Follow Up (TCFU) programme.

Pathway redesign initially took place for new breast cancer patients and is now being implemented across a range of other areas. The results so far indicate that TCFU has been very successful in replacing the traditional ‘one size fits all’ approach to aftercare with a new system that has improved patient experience whilst reducing duplication and unnecessary appointments.

Cancer strategy in Northern Ireland

Macmillan is also supporting calls for a cancer strategy to cover the whole pathway. We believe the development of a strategy would be an important step towards modernising services and reducing variation in the availability and quality of care. It is essential that any strategy has a strong emphasis on patient experience and the needs of people living with and beyond cancer. In the meantime, we look forward to the publication of the revised Cancer Services Framework.

For more information:

• Get involved with our campaign
• Read about the evaluation of the Transforming Cancer Follow Up programme
• Please get in touch.

Macmillan joined forces with the Public Health Agency to deliver Northern Ireland’s first Cancer Patient Experience Survey (CPES) in 2015, with over 3,000 responses. The vast majority of patients (92%) rate their overall care as highly positive, but there are also variations which must be addressed.

We believe 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 person-centred care and support.

Keep patients informed

Currently too many patients are not receiving information at key stages in the cancer pathway. Providing timely, appropriate and easily understood information helps people understand their cancer, make informed decisions about treatment and care and cope with any long term consequences they may experience. This also helps to deliver improved patient safety, reduce risk and support better self-management outside acute hospitals in line with Transforming Your Care and the Donaldson Report.

Clear signposting to support

It is our goal to ensure that people living with cancer are signposted to the support they need at each stage of their cancer journey. This can be achieved through better integration and coordination of health and social care and voluntary sector services. The NI Assembly can help by championing patient experience and ensuring that CPES is repeated, with its findings used to drive key improvements and achieve excellent care for everyone facing a cancer diagnosis.

For more information:

• Read our infographic for an overview of results from CPES in Northern Ireland
• Read the report of all CPES findings across Northern Ireland or in your local Health and Social Care Trust
• Read about Patient Experience in Macmillan NI Policy section
  
• Please get in touch.

We are committed to identifying unmet need for services, investing in and developing the workforce.

There are more than 170 Macmillan professionals working in hospitals and community settings across the five Health and Social Care Trusts. These include nurses, pharmacists, physiotherapists, dieticians, occupational therapists and welfare benefits advisers, as wells as GPs, consultants and service leads. 

Macmillan also supports a growing network of unpaid volunteers to provide valued assistance to people affected by cancer, both in the community and in Health and Social Care settings.

• Macmillan has funded research and campaigned over many years for gaps in the CNS workforce to be addressed, and we are now contributing £7 million towards the news posts to help ensure equal access to CNSs for everyone facing a diagnosis. 
• In March 2016, the Minister for Health announced an £11 million investment to fund 60 Clinical Nurse Specialist (CNS) and Support Worker posts in Northern Ireland over five years.
• We also believe that careful succession planning must remain a priority, as the 2014 workforce census showed that around 1 in 3 CNSs in Northern Ireland would be approaching retirement within 5-10 years.

For more information:

• Read the specialist cancer nurse workforce census report
• Read more about Workforce in Macmillan NI's Policy section
• You may be interested in our Health and Social Care Professionals section
• Please get in touch.

As the number of people living longer with cancer increases and many develop multiple conditions, primary care services have a key role to play in managing and coordinating their care. In many cases, the GP is the first point of contact and their ability to signpost to appropriate support services are highly valued by the patient.

With increasing numbers of people living with cancer as a long term condition, GPs and community pharmacists must be assisted in supporting self-management. This includes promoting recovery and healthy lifestyle and ensuring that patients are equipped to use medication effectively.

Macmillan believes that the needs of people living with cancer should be a priority for primary care services. Professionals must have opportunities to improve their knowledge of the late effects of cancer and the consequences of treatment. This will enable GPs to identify signs and symptoms of recurrence sooner, make earlier referrals and improve outcomes for patients.

• Read more about Living with and beyond cancer in Macmillan NI's policy section
• Please get in touch for more information.

Cancer is the most common cause of deaths in Northern Ireland (28%), but too many people do not receive good quality care that meets their individual needs and wishes.

Macmillan has campaigned for the NI Assembly to promote the use of advance care planning (ACP). 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 be told about their condition. Best use of ACP requires health professionals to be trained to communicate well during difficult conversations.

Improved uptake will depend on greater public awareness of the process and its ability to help people maintain control of their care if their condition changes.

The ‘Living Matters, Dying Matters’ strategy and the Transforming Your Palliative and End of Life Care programme, both drivers of significant progress during the previous Assembly term, have now ended. We consider it vital that improvements to palliative and end of life care remain high on the agenda, in order to enhance quality and meet rising demand.

For more information:

• Read the review of the Palliative and End of Life Care Strategy implementation
• Read our booklet ‘Your Life and Your Choices: Plan Ahead’
• Please get in touch.

Find out more about...

• Macmillan's End of life campaign
• End of life care on Macmillan NI's policy section