Cancer Focus NI has announced a £60,000 commitment to fund a two-year research audit into Secondary Breast Cancer in Northern Ireland.

After engaging with secondary breast cancer patients and campaigners, Julie Lillis and Ann McBrien, into the urgent need for such research, the charity lobbied political parties in the lead up to the 2022 NI Assembly Elections to commit to a secondary breast cancer audit that would see data better captured and used in decision making. Now approaching a year into the launch of a new Cancer Strategy for Northern Ireland and the first anniversary of another suspended Stormont, the charity has revealed that it will pledge funds to the Northern Ireland Cancer Registry at Queen’s University Belfast to drive forward this vital study.

Speaking about the funding, Richard Spratt, Chief Executive of Cancer Focus NI said: “I’m delighted to announce this news, which not only reignites the strong historic relationship between Cancer Focus NI and the NI Cancer Registry but highlights our charity’s continued commitment to engage with patients and champion for better health equity for the people of Northern Ireland.”

Detailing the secondary breast cancer need in Northern Ireland, Richard Spratt explained: “It was previously estimated that 35,000 people in the UK were living with secondary breast cancer but recent research has shown that there are over 57,000 people living with the disease in England alone. No such updates have been carried out for the rest of the UK. Without statistics for Northern Ireland, health services and charities are unaware of the scale of service and support needs of this group of patients, and the resources required to address them. There is a very real urgency to develop this information and use it to improve the lives of local women living with this dreadful disease. Put simply, without this information and the necessary resources, patients in Northern Ireland are losing out on the opportunity to have their lives extended for as long as possible.”

Incurable secondary breast cancer occurs when the cancer spreads to another part of the body such as the liver, lungs, brain, or bones. Having a terminal diagnosis is devastating, both physically and mentally, with patients having to deal with the fact that the average survival is around 3 years with approximately thirty-one people dying from the disease each day in the UK. Many patients in Northern Ireland feel overlooked because they do not have the same access to specialist interventions, clinical trials and dedicated secondary breast cancer nursing support that patients elsewhere have. With NHS England and Wales already committed to commissioning a clinical audit on secondary breast cancer, this timely funding from Cancer Focus NI will help to ensure that those living in Northern Ireland with this devastating prognosis will have their voices heard and needs addressed.

Speaking of the funding, which will see the first year of the audit made possible thanks to a kind donation to the charity from the late Dr Jim Birnie and his family, campaigner Julie Lillis said: “The Cancer Focus NI funding of a secondary breast cancer audit is truly groundbreaking and should lead to real, tangible changes so that we have the same life chances as patients living in other parts of the UK. For people in our situation, this can mean the difference in experiencing another milestone in our lives and precious extra time with our loved ones.

Urgent change is needed for people, like me, who are living with secondary breast cancer in Northern Ireland, as we are somewhat left behind compared to other parts of the UK. Capturing and analysing data is the first and very important hurdle to achieve this to help ensure we can get the right support, treatment, and care.

There is no way that Secondary Breast Cancer can be changed from being a death sentence to a chronic illness without knowledge. Data can save and extend lives. Currently we are only accounted for when we die, the audit will change this. I feel so privileged to be able to play a very small part in something that could help the lives of those in the future and I am so incredibly grateful to Cancer Focus NI for not only listening to our concerns but taking action in bringing this audit to fruition.”

Detailing the importance of audits as improvement tools within the health sector, Dr Damien Bennett, Director of the Northern Ireland Cancer Registry commented: “As population ageing and life expectancy increase, more people are living longer with cancer, and the number of people who experience secondary or recurrent cancers will increase. However, the Netherlands is the only European country to systematically record cancer progression/recurrence, which requires substantial resources. This funding will allow us to develop methodology and processes to assess the scale and burden of disease of secondary breast cancer in Northern Ireland.”

Ann McBrien, a representative from the Beaconbridge Secondary Breast Cancer group, who will provide patient involvement in the delivery of the audit said, “As a group of people living with a life-limiting disease, we are delighted that Cancer Focus NI listened to our plea for a clinical audit and engaged the NI Cancer Registry to undertake this crucial research. Our hope is that the audit findings, like similar studies in England, US and Australia, will provide evidence of the increasing prevalence of secondary breast cancer in Northern Ireland and confirm the need for more resources for medical and nursing care, improved treatments, increased research and clinical trials. We desperately need the right level of care and support to meet our needs to enable us to live as well as possible, for as long as possible.”