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The Journal
15-07-2025
- Health
- The Journal
Sinn Féin seeking centre of excellence for endometriosis care as women 'being failed'
WOMEN WITH ENDOMETRIOSIS are being 'failed' and let down by the state, according to Sinn Féin, who are seeking that the government commit to providing a centre of excellence in order to improve care. Endometriosis is a chronic disease that sees tissue similar – but not the same as – the lining of the uterus grow in other places. It's usually found in the pelvic region, but can be found anywhere in the body. It is not a menstrual condition, but it's often triggered in girls when they begin to get periods, and it can cause intense pain that is debilitating in some cases and heavy bleeding during periods. The disease impacts an estimated one in ten women in Ireland, but the level of specialist care and assistance offered by the healthcare service here has often been criticised for being under resourced. The Journal Investigates last year revealed that more than 100 Irish women had to seek care in Romania due to long waiting lists and a lack of affordable alternatives here . Sinn Féin is now calling for the health minister to 'take this disease seriously'. Advertisement Sinn Féin's health spokesperson David Cullinane and Senator Maria McCormack have drafted legislation which seeks to establish a centre of excellence in order to meet the level of capacity needed to deal with the number of cases here. Government previously committed to providing two specialist hubs and additional staff to reduce barriers to care for effected women. According to McCormack, there is currently a significant staffing deficit at the centres. 'We have spoken to many women who have attended these new centres, but they are not getting the treatment that they need,' she told The Journal , adding that there are at least 15 vacancies at one centre. 'I [spoke to] one little girl who attended one of these centres, and she was told she didn't have endometriosis. Then they went abroad for treatment, and she had quite extensive endometriosis lesions,' she added. Cullinane said that if there was one centre of excellence for care, the proper and full resources would be made available for women attending the centres and seeking treatment. 'We want, basically, every woman to have the same opportunity that they have in other European countries to gold-standard treatment,' he said. 'Far, far too long, as we've set out in our motion [tonight], women have been failed.' The Waterford TD said that the provision of 'second-best treatment' is not the fault of those currently working within the healthcare sector, but health minister Jennifer Carroll McNeill and HSE management. Related Reads Health minister announces 'see-and-treat' gynaecology services and 'advanced' endometriosis centre 'I just felt like I don't matter': Women forced to travel to Romania for endometriosis treatment 'Shame and stigma' mean women with endometriosis suffer in silence over painful sex He said that hospital staff want to improve healthcare for women, but claimed that pre-approved posts to help with this have been cut as a result of a cap on employment and cost levels in the healthcare system. 'Now they have to go back and start from scratch again,' he said. 'We'll be raising all of these issues and the need for that centre of excellence as a starting point with the Minster for Health.' A national framework for the disease is currently being developed and nearing completion, Carroll McNeill said last month . It will identify how care for women will be delivered at primary care centres, local hospitals and specialist complexes. It will be published once it is approved by doctors' union the Irish Medical Organisation, she added. Readers like you are keeping these stories free for everyone... A mix of advertising and supporting contributions helps keep paywalls away from valuable information like this article. Over 5,000 readers like you have already stepped up and support us with a monthly payment or a once-off donation. Learn More Support The Journal
The Journal
07-07-2025
- Health
- The Journal
'It's breaking me': Our readers share the impact of cancer scan delays
NOBODY WANTS TO hear the word cancer, but thankfully as science advances, it is becoming more treatable and people are living longer with the disease. But from diagnostic scans to treatment to surgery to surveillance, people are encountering delays in the Irish healthcare system at every step on their cancer journey. Delays in diagnosis and treatment 'are Ireland's biggest obstacle to improved cancer outcomes', according to Averil Power, CEO of the Irish Cancer Society. The Journal Investigates reported earlier today that hospitals are failing to consistently start treatments including chemotherapy on time. Before ever reaching this step, many people anxiously wait — often for weeks or months — for tests needed to diagnose or monitor their cancer. This is not a small number. Over 300,000 people were waiting on scans in Ireland at the end of March 2025, with a shocking 15% waiting over 18 months. That is the waitlist for all conditions, but it includes tests that are vital for the diagnosis and treatment of cancer, such as urgent and surveillance CT, MRI and ultrasound scans. Readers contacted us from across Ireland to share the physical and psychological impacts these delays are having on their lives. They felt forgotten, holding their breaths, unable to think about their future. Thank you to everyone who got in touch. Here's what you told us. 'I'm in a constant panic by not knowing' Emma Aspell from Dublin, who has two young children, received news she was dreading last week — her cancer was back, and had spread to her lungs. She was diagnosed with breast cancer in 2023 and finished treatments for it in May 2024. Unfortunately, a year on, her surveillance scan wasn't clear and lung cancer was subsequently confirmed. But now she is waiting for a plan. I have been so optimistic. I've had so much fight in me. But my anxiety is winning. Emma said her consultant can't make a plan until she has a biopsy and the wait is three weeks. 'My consultant said he feels for me, but as they need a CT scanner to do a lung biopsy the wait is this long. 'It's breaking me. This could be the difference of life and death for me.' — Investigations like this don't happen without your support… Impactful investigative reporting is powered by people like you. Support The Journal Investigates Advertisement 'The system is so broken' Margaret Higgins said that, after many 'gruelling' months of chemotherapy and radiation, monitoring to see if her cancer has returned is her 'lifeline'. Due to a backlog, her mammogram at a large hospital in Dublin was delayed so she resorted to a private scan. Her next annual check-up was also pushed out by a number of months. 'The system is so broken,' she told The Journal Investigates. 'The staff are killing themselves' but whoever is making funding decisions 'is not doing a good job'. If you haven't got somebody strong to fight for you, you just get left behind. 'When you're not feeling well, you can't fight for your yourself,' Higgins added. Margaret was just one of numerous readers who told us that their mammograms were significantly delayed. Martina Balte, a breast cancer survivor, is waiting for an appointment for her overdue annual mammogram. It was due in May, but she doesn't even have a date. 'I contacted my breast cancer nurse — who couldn't help with an appointment and she told me to do regular breast checks myself while waiting on my appointment.' 'When I was diagnosed at 48, my symptoms were a pain under my arm. When I got my diagnoses of a 5 cm lump, I couldn't feel it. To put the responsibility on me to check for recurrence due to imaging not being available is wrong. 'Cancer survivors live with a fear of recurrence every day. There should be no delays with their appointments, mammograms or scans.' 'You're forever left with 'what if' Muireann Mc Colgan was diagnosed with stage four breast cancer two weeks after her daughter Aobh was born. Getting access to scans continue to be an ongoing issue for her, even after diagnosis. That includes yearly mammograms. But her last appointment was pushed out by five months. 'You feel forgotten about,' she said. The delay made her feel like she didn't matter to the health service 'because she was going to eventually die to the disease'. Muireann Mc Colgan feels forgotten by the health service. Muireann Mc Colgan Muireann Mc Colgan Alongside two other women with breast cancer, Niamh Noonan and Ziva Cussen, she started a campaign — Too Young To Be Heard — calling for improvements across a number of areas of cancer care, especially for young women. The ability to get scans or biopsies on the same day as a BreastCheck appointment is one of their key asks. Muireann said that women who are waiting for tests are 'terrified'. Rather than wait for a place in the public system, she said: 'Honestly, without freaking them out, I just tell them to go private.' She told us that 'the whole thing is a mess'. You're forever left with the 'what if'. What if it been done earlier? What if I had pushed for it? Other issues the campaign group say need to be addressed include lowering the age of public breast cancer screening, immediately referring women with symptoms to specialist clinics regardless of age or family history, as well as financial assistance with treatment and lost earnings. The Health Information and Quality Authority (HIQA) is to examine extending breast cancer screening beyond the current ages of 50-69. This comes as guidance issued in the United States last year recommended it should start at age 40. Niamh Noonan, Ziva Cussen and Muireann Mc Colgan set up Too Young To Be Heard to amplify Irish breast cancer voices. Muireann Mc Colgan Muireann Mc Colgan Related Reads 'It's getting tougher': Hospitals failing to consistently start chemo on time Cancer diagnoses could double by 2045 without urgent action, warns Irish Cancer Society Funding removed from large cancer centre Mater University Hospital diagnoses over a fifth of all breast cancers in Ireland. When asked about delays to mammograms, a spokesperson for the hospital said that it 'is facing significant capacity constraints due to high demand and a lack of funding'. Last year, 'dedicated funding for additional mammography lists was removed, which directly impacted on the unit's ability to meet the demand for services'. The Mater's unit receives about 7,500 referrals every years and also receives patients post diagnosis from the Breastcheck unit. 'A comprehensive business case' for extra staff and resources has been submitted by the hospital. The Dublin hospital said that it 'regrets any inconvenience caused to our patients due to the capacity constraints of the service' and it is 'working to find solutions to the issue'. 'Patients are consistently advised to consult their GP for re-referral if they develop symptoms of concern.' 'Inefficiency in the system' The readers that contacted us attended a wide variety of hospitals, so it is clear that cancer units right across Ireland are impacted by these capacity constraints. One reader who lives in the midlands has been waiting for years to find out if her symptoms are, in fact, cancer. She first had them around three years ago, and between delays and lack of capacity, she only had a biopsy in April. 'It's almost three months since I had the procedure and getting close to three years since I first reported symptoms to my GP and I still have no results. 'I fully understand the pressure on hospital staff, but I also think there is a significant degree of inefficiency in the system.' Other readers recounted their hurt and frustration about the treatment of their relatives who died of cancer. Many cited delays in diagnosis while waiting for PET and CT scans, even as an inpatient or when attending the emergency department with cancer-related symptoms. Kiri, who is based in the south, told us that his wife had to endure this 'hell'. 'Simply in order to get the required MRI scans my wife had to spend four days (of what turned out to be her last two weeks) on a trolley in corridors and later a basement storage room, with lights constantly on, waiting for the scan the doctor had ordered.' Because of the lack of capacity, she had to be admitted as an inpatient to get further tests. Despite her not needing to stay in hospital, she was forced to stay in an overcrowded ward for a further five days away from her family simply to hold her place in the queue. Claire, who contacted us about her mother's care, told us that a follow-up scan wasn't scheduled until she, and her sisters, pushed the hospital for it. When the scan eventually happened, the cancer had regrown. 'From waiting for weeks for scans, further weeks for results and constantly having to follow up ourselves… I am convinced that if we had not been there to advocate for her, her life would have been cut even shorter.' From investigation to consultation in 8 days We also received a positive story from reader Peter Larner living in the midwest. He was diagnosed with bowel cancer following routine screening by the HSE. I received, in a matter of days, a letter with an invitation for more tests. A CT scan was scheduled for the following week and Peter had an appointment with a surgeon a few days after that. He said it took eight days from 'investigation to consultation' and he had surgery within five weeks. This experience was 'hugely positive thanks to the HSE', he told us. Radiographers calling for dedicated units There is a need for dedicated units to prevent delays, according to Liam Downey, president of the Irish Institute of Radiography and Radiation Therapy (IIRRT). Sign up The Journal Investigates is dedicated to lifting the lid on how Ireland works. Our newsletter gives you an inside look at how we do this. Sign up here... Sign up .spinner{transform-origin:center;animation:spinner .75s infinite linear}@keyframes spinner{100%{transform:rotate(360deg)}} You are now signed up 'If you had units that are purely scheduled care… it's more streamlined and better for patients,' he told us. Unscheduled care, such as a trauma patient after a car crash or an ICU patient who needs an urgent scan, mean there is a 'constant balance' between ensuring they can be seen and fitting in outpatient scans. 'They're all coming through one system.' Downey said his members 'are seeing delays to oncology patients needing a scan after radiation or chemotherapy'. 'Trying to meet these timelines is a particular challenge. There isn't capacity there to get them back in.' That is an issue that the Irish Cancer Society's Averil Power also raised. 'Effects on the body can be quite harsh, so you don't want to be giving somebody chemotherapy if it's not working. 'It's really important that people are getting regular scans' to check this, she told The Journal Investigates. As a result of not getting these scans, she said: Patients are starting their treatment later, and also patients are potentially being given treatment that isn't working. That is hugely concerning. As well as more investment in diagnostic capacity the charity is calling for dedicated cancer centres. That is the 'long-term goal' so that 'cancer isn't competing with other diseases' when it comes to scans, treatment slots or surgery. A Department of Health spokesperson told us: 'The Government is fully committed to improving cancer care, ensuring better prevention, maintaining improvements in cancer survival rates, and timely access to treatments.' They said that since 2017, €105 million been invested in the National Cancer Strategy, including €23 million this year. 'This has enabled the recruitment of over 670 staff to our national cancer services, including 200 nursing staff, 100 consultants, and 180 health and social care professionals in designated cancer centres.' In relation to delays in diagnosis of cancer, the spokesperson told us: 'The Department is reviewing utilisation of diagnostics and this will utilise the National Integrated Medical Imaging System (NIMIS) to provide hourly usage data of machines and look at enablers to use machines on evenings and weekends.' IIRRT's Downey told us 'there are huge efforts being put in across the country to increase the capacity'. Radiographers are working on call, evenings and weekends in some places. 'But without the resource behind it, it doesn't actually lead to any increase in volume.' To address this, he said more staff are needed. The IIRRT have submitted a business case on this to the HSE and Department of Health. Though he also warned that even with all units running at full capacity 'we're constantly behind the curve'. 'By the time we increase infrastructure, we are already behind what is needed.' The Journal Investigates Reporter / Editor: Maria Delaney • Main Image Design: Lorcan O'Reilly • Social Media: Cliodhna Travers Investigations like this don't happen without your support... Impactful investigative reporting is powered by people like you. Over 5,000 readers have already supported our mission with a monthly or one-off payment. Join them here: Support The Journal
