Cancer care crisis: Delayed diagnosis, two-tier system, and a lack of new treatments
Niamh Conroy, who has stage 4 cancer, is co-founder of online support group Bowel Cancer Ireland. Photo: Moya Nolan
Cancer patients waiting days on trolleys in emergency departments, having to move to Spain for a cancer clinical trial, waiting seven months for a colonoscopy — these are not the stories we expect about cancer, the “poster child” for reform in Ireland.
Despite seemingly significant improvements in survival rates for many cancers in Ireland over the last two decades, patients and doctors say the reality on the ground is very different.
Just this month, oncologists, researchers, and the Irish Cancer Society issued stark warnings to the Oireachtas Health Committee about going backwards, while an open letter to the Taoiseach, signed by 21 doctors and researchers, called for “proper funding” of the National Cancer Strategy 2017-2026.
For one cancer patient, these warnings were not surprising.
Niamh Conroy, a mother of four from Dublin, was diagnosed with stage 4 rectal cancer in 2022 and is co-founder of online support group Bowel Cancer Ireland.
“I think a lot of people don’t realise what the reality of cancer care actually is. As patients, we understand the frustrations of those consultants. There are gaps.”
The letter highlighted delays in expanding age limits for cancer screening programmes. This hit home for her as she was diagnosed at 44, far younger than the lower limit of 59 for BowelScreen.
“Young patients are being diagnosed at a later stage, where our outlook is quite poor,” she said. “That happened to me and to many of my colleagues in Bowel Cancer Ireland, we were almost all mothers. The reality for an awful lot of people when they are diagnosed at such a late stage.”
Evidence supports an age range of 55 to 74, the strategy suggests, which Ms Conroy feels would help but does not go far enough.
She shared some members’ recent treatment experiences with the .
One person said after a procedure to see whether or not they had cancer: “I waited 10 months before being told — at that (earlier) point I would have been Stage 3 with options.” This person is now “gravely ill” in hospital.
Another patient said they spent “seven months waiting for a colonoscopy”, despite “numerous samples and bloods” sent in. The colonoscopy found cancer at “stage 4 advanced, with mets (metastases) to the liver”. The HSE target is a 13-week wait for routine colonoscopies.
Another shared the impact of clerical staff shortages, saying they spent “a few weeks” making calls to a phone no one answered, even though the number was on her appointment letter.
Eventually, someone phoned, explaining that the consultant radiologist no longer had a secretary. Due to this and other delays, “another two months passed before treatment could start".
One patient revealed how their GP could receive consultants’ letters “weeks and even months after a decision was made” about care. Ms Conroy said these are not unusual, adding: “I know of radiation being delayed by months for some patients.”
The letter to the Taoiseach also warned that Ireland falls short of “the already modest target of 6% of cancer patients participating in clinical trials”.
Again this is familiar to Ms Conroy, and she said: “Trials are a huge issue. I’ve had people who ended up relocating, there is one family currently living in Spain, working remotely."
John Wall from Clare is living with a stage 4 prostate cancer diagnosis. He is well-known in the cancer world for his fight to get patients with a terminal diagnosis access to a medical card.
He was not surprised by references in the letter to a two-tier system opening up between private and public patients.
“Last Friday I went to a GP, and had a scan on Tuesday, the result on Wednesday — one of the first questions I was asked was ‘do you have private cover?’.”
For anyone without insurance, the waiting list for an MRI scan, he understands, could be three months.
“I was able, within days, to have the result and arrange any follow-up. Public patients would have been on a waiting list,” he said.
That private service is located within the public primary care centre building in Ennis. “I know the impact it would have had on me if I’d had to wait two or three months for that scan,” he said.
Insurance also gives him faster access to new treatments approved by the European Medicines Agency, again an issue in the letter. "A lot of new treatments are being introduced for prostate cancer and they are not all here in Ireland, not by a long shot," Mr Wall said.
The letter warned cancer surgeries are being delayed, often linked to hospital overcrowding. "The waiting times for surgery for prostate patients, the target is 90% (within a set time), but in 2021 that was 47%," Mr Wall said.
However, he also emphasised his treatment for cancer at University Hospital Limerick has been “superb”.
Among those who signed the open letter was Irish Society of Medical Oncology president, Professor Michaela Higgins. “Our members are frustrated and exhausted to work within a chronically underfunded and fragmented system that is not providing oncology patients with the care they deserve,” she said.
She hears frustrations from around the country and sees similar challenges as a consultant oncologist at St Vincent’s University Hospital. Bed shortages can mean cancer patients not being kept together on a single ward with specialist nursing care but instead “scattered” throughout a hospital, she said.
"When I rounded the weekend before last, I had to go to 13 different locations in the hospital to find our patients.
Like many Irish doctors, she worked in America, returning nine years ago.
“When I came back, I told patients they would get very similar care in Ireland as I would have provided in my clinic in Massachusetts General in Boston. But nearly a decade later, that is less true now than it was, we are slipping behind,” she said.
Prof Higgins, also a clinical professor at UCD, worries too about staff shortages.
“Many oncology units across the country do not have the appropriate number of clinical nurse specialists they need, or have to manage entirely without those key roles during periods of annual or maternity leave, for example,” she said.
She echoed concerns in the letter around the speed of access to newly-approved medications for public patients.
“There are many wonderful people employed across the healthcare system working to provide our patients with the care they deserve but lack of streamlined services, adequate staff, dedicated beds and imaging slots hamper those efforts,” she stressed.
For Professor of Cancer Genomics at the University of Limerick, Aedin Culhane, one central issue is the lack of data on cancer patients.
“The data infrastructure in Ireland is being updated but too slowly. Since 2007, even 2017, technology has advanced so fast. Modern cancer care needs digital records.
"We need a much faster transition to digital. It is like everyone else has an iPhone and you are still using a Nokia flip-phone.”
This has a direct impact on cancer patients, she said.
Proper funding of the strategy would help people get diagnosed earlier, which she has seen work successfully in America.
“We don’t have a system whereby people go in for regular preventative care in Ireland. It’s common for people to avoid their GP until their disease is advanced,” she said.
Prof Culhane said Ireland is ageing as a population.
“Already we’ve got one of the highest incidences of cancer in Western Europe. We are going to have more cancers as we age, cancer mostly occurs in people over 60,” she cautioned.
Dr Micheál McCarthy, an oncologist at University Hospital Galway and chair of the NCCP Medical Oncology Clinical Leads Group, has serious concerns about the gap between public and private access to new drugs for patients.
In this letter, he supports the call for multi-annual funding for the National Cancer Strategy through support for the National Cancer Control Programme (NCCP).
“Major strides” were made in the last five years, he said, pointing out that the Saolta Hospital Group received NCCP funding for a range of key roles including a psycho-oncology specialist psychiatrist and two oncologist posts.
Across all hospitals, oncologists are seeing their daily work hit by shortages of other staff.
“I explicitly had no clerical support, no outpatient department space to see patients, no desk space, and no specialist nursing support,” he said of starting his current role, noting this is not unusual.
The letter was supported by the Irish Cancer Society, which also shared concerns with the Oireachtas Health Committee. CEO Averil Power said every three minutes someone in Ireland learns they have cancer.
“With cancer rates expected to double by 2045, one in two of us will be diagnosed with the disease in our lifetime. When we are, we deserve the best possible chance, both of surviving and of having a good quality of life afterwards,” she said.
“Sadly, people with cancer are not being given that opportunity in Ireland today due to Government failure to properly fund the 2017 national cancer strategy.”
She warned despite huge improvements in care and survival rates, the lack of funding now means "Ireland's cancer outcomes may have stagnated or even disimproved since the strategy was published".
This week, Siptu said that shortages still affect radiation therapists' roles. The strategy described them as “essential” and recommended expanding the number of specialist roles.
Sector organiser John McCamley said, however, that between December 2019 and this February, there was only a 2% increase in radiation therapist numbers in public services. “That is an increase which is equal to only four full-time funded positions,” he said.
Therapists have previously told the about bringing less severely ill patients in at night for radiation to try and clear their backlogs.
At least six machines used in the delivery of radiation therapy were lying unused in hospitals across the country during March including in Cork University Hospital, Galway University Hospital and St Luke’s Oncology Network, Mr McCamley claimed.
Questioned about cancer care in the Dáil, Taoiseach Simon Harris — Health Minister when the strategy was published — chose to focus on the positives.
“We have seen a very significant improvement in survival rates in Ireland, right across all cancers and all ages. We now have 215,000 people living in Ireland following a cancer diagnosis compared to 150,000 in 2017.”
Health Minister Stephen Donnelly said he would advocate for more funding in the next budget, saying: “We are investing in cancer services this year, in terms of prevention, there’s more money going in. There has never been as much investment in cancer services, and we don’t unfortunately see those letters written.”
He pushed back on the claims in the oncologists’ letter, saying “the reality is over three of the four years in government, there has been very substantial investment into the national cancer strategy.”
Sinn Féin, in a private members motion in the Dáil, called for the Government to revise the health budget and deliver the funding requested by the doctors. Health spokesman David Cullinane described the letter as “alarming” and said it was “disgraceful” doctors had to go public like this with warnings.
Social Democrats health spokesperson Róisín Shortall said: “Instead of providing ring-fenced, multi-year funding, this strategy has only received funding for implementation in two of the last seven years. Cancer data collection is “a major shortcoming", she said.
A Department of Health spokesman defended progress, saying “65% of patients (were) living five years after a cancer diagnosis in 2014 - 2018, compared to 44% in 1994-1998.”
Capital funding of over €120m saw new “state-of-the-art radiation oncology facilities” in Galway and Cork, he said. Screening services received an additional €30m.
Up to now cancer services were seen, as Ms Power put it, as “the poster child” for reform in health following a radical revamp in approach starting in 2007. The Irish Cancer Society also shares stories of patients receiving the right care at the right time, even during the pandemic.
In one example, Susan Lanigan, living in Cobh, shared how she discovered a lump on her breast just before Christmas 2022, was diagnosed in January and had surgery in February, followed by chemotherapy and radiotherapy. She is now “doing well” and back at work.
Mr Wall called for a unified approach to take account of gaps that must be addressed and build on the improvements already made.
“It is about listening to the people who have spoken out in recent times, that letter is absolutely crucial — all sides coming together for the greater good, the process has started but it needs to continue.”
