First major blood cancer audit in 15 years aims to expose gaps in Northern Ireland care

More than 8,700 people living with or in remission from blood cancer in Northern Ireland could be affected by a major new programme designed to expose weaknesses, inconsistencies and gaps in cancer care for the first time in over 15 years.

A large-scale audit and epidemiological review has now been launched by Leukaemia & Lymphoma NI (LLNI) and Blood Cancer UK, working in partnership with the Northern Ireland Cancer Registry (NICR) at Queen’s University Belfast.

The programme will bring together detailed clinical hospital data and population-wide cancer registry information to create what organisers describe as the clearest picture yet of blood cancer diagnosis, treatment and patient outcomes across Northern Ireland.

First comprehensive review since 2008

Despite major advances in treatment, diagnostics and care pathways over the past decade and a half, there has not been a full regional audit of blood cancer care in Northern Ireland since 2008.

The new work will examine cancers including leukaemia, lymphoma and multiple myeloma, with a detailed clinical audit focused specifically on lymphoma care.

It also marks the first Northern Ireland blood cancer report to include information relating to multiple myeloma.

Health organisations behind the programme say the absence of updated regional analysis has left significant gaps in understanding how care differs between services, where patients may experience variation in treatment, and what improvements are still needed.

Blood cancer is currently the fifth most common cancer in Northern Ireland and the third biggest cancer killer.

More than 850 people are diagnosed with blood cancer each year across the region, while over 330 people die annually from the disease, including more than 130 lymphoma deaths and around 110 deaths from leukaemia every year.

New audit to compare Northern Ireland with rest of UK

The audit aims to identify differences in care across Northern Ireland while also comparing local outcomes against quality indicators used elsewhere in the UK.

By analysing real-world patient data from treatment centres alongside registry information, clinicians and researchers hope to pinpoint examples of best practice, improve consistency in treatment, and better understand where services are performing well — and where they are not.

Dr Oonagh Sheehy, Consultant Haematologist at Belfast Health and Social Care Trust, said blood cancers present unique challenges because of their complexity and the wide variation between disease types.

She said:

“Blood cancer is a group of cancers which includes leukaemia, lymphoma and myeloma. Each of these diseases has distinct ways of presenting and can respond differently to therapy. Lymphoma is highly complex with over 50 known subtypes, which can make it difficult to measure and track outcomes.

“By linking detailed clinical information from hospitals with registry data, we’ll be able to build a much clearer understanding of how patients with lymphoma are diagnosed and treated across Northern Ireland. This insight will help us identify where care is working well and where we can improve services for our patients in the future.”

Patients hope findings lead to fairer treatment experience

For patients living through blood cancer treatment, organisers say the audit has the potential to shape future standards of care across Northern Ireland.

Jacqueline Stewart from Belfast, who was diagnosed with lymphoma at the age of 18, described how cancer transformed her life during her teens and twenties.

She said:

“Being diagnosed with lymphoma at 18 completely blindsided me. At that age, you just never think it’s going to be you. My whole life changed overnight, and in many ways my twenties have revolved around cancer including treatment, hospital appointments, and recovery. It felt like everything was put on pause.

“I’ve been through multiple rounds of chemotherapy and a stem cell transplant, and there were times it was incredibly tough both physically and mentally. You spend a lot of time on your own, and there’s always that worry in the back of your mind that never fully goes away.

“But I also know how fortunate I’ve been to receive such good care. From the moment I was diagnosed, I felt like I was in safe hands, and that made such a difference during the hardest times.

“I’m now back at work and getting my life back, and that means everything. Projects like this are so important because they can help make sure everyone gets the same standard of care and support. If it helps even one person have a better experience or get through treatment more easily, it’s worth it.”

Nearly 100 patient records already submitted

The Northern Ireland Cancer Registry at Queen’s University Belfast, led by Director Dr Damien Bennett, is overseeing the population-level data analysis.

Audit Analysts Dr Stephen Quinn and Sinéad Hawkins will examine more recent patient diagnoses and compare outcomes with standards used across other UK nations.

Clinicians across Northern Ireland are already contributing data to the programme, with almost 100 patient records submitted to the registry so far.

Stephanie McMullan, Business and Operations Manager at Leukaemia & Lymphoma NI, said the programme could deliver meaningful long-term improvements for patients and families.

She said:

“This audit will be the first of its kind since 2008 and the first blood cancer report in Northern Ireland to include information related to multiple myeloma.

“In addition, the clinical audit will focus on Lymphoma, with additional data being provided by patients and clinicians. This will allow us to better understand the quality and consistency of care for patients across Northern Ireland and make comparisons with other parts of the UK.

“We believe the insights from both parts of this audit will translate into meaningful improvements for patients and families in NI.”

Pressure growing for stronger focus on blood cancers

Blood Cancer UK said blood cancers have historically received less attention than many other major cancers despite their impact on patients and mortality rates.

Helen Rowntree, Chief Executive of Blood Cancer UK, said stronger data would ultimately lead to better patient care.

She said:

“Blood cancers are the third biggest cancer killer in the UK, yet historically they haven’t always received the same level of focus as other cancers when it comes to understanding care pathways and outcomes.

“Projects like this are incredibly important because good data drives better care. By working with partners in Northern Ireland, we can start to build a clearer picture of how lymphoma patients are diagnosed and treated, where services are working well, and where more support is needed.

“Ultimately, that knowledge will help ensure people affected by lymphoma receive the best possible care, wherever they live.”

The epidemiological report is expected to be published during summer 2026, with wider audit findings due later in the year as researchers and clinicians continue gathering patient data from across Northern Ireland.