The context around the Portlaoise hospital debacle is a microcosm of local politics that have paralysed the country for decades, writes Kathy Sheridan
Last Monday morning, while the nation was digesting the news that seven women in the midlands who had been given the all-clear, were in fact suffering from breast cancer, a woman called "Mary" rang radio station Midlands 103.
Mary told presenter Will Faulkner that she had had a breast lump removed at the Midland Regional Hospital in Portlaoise in 2000, so last July, when she was called in for another mammogram, she was raising a big metaphorical red flag. Not only had she a history, she had another lump on her breast. She brought it to the attention of the "lady" there and returned for an ultrasound the following morning. Two weeks later, she was assured by a doctor that the tests were clear. "He asked had I problems and I said I was very sore in my right breast, very sore. He said, 'take Evening Primrose and we'll see you in December, you'll be fine'." It was only when she heard about other misdiagnoses that she rang a helpline, and looked for another appointment in Portlaoise. "I said to the surgeon that I wasn't happy that I had a lump and that I wanted to go to Dublin," she told Faulkner.
"He looked at me and said 'sure if you're not happy, we'll send you . . .'."
Last month, she had a biopsy in a Dublin hospital. A week later, she was told she had cancer secondaries. She was with her daughter when she got the news. She said softly: "If I had been driving myself that morning, I would have treated my cancer myself and I'll leave it at that."
Of itself, Mary's story is enough to shake any woman's confidence in the system. What makes it more shocking is that she is not among the seven "misdiagnosed" women reported by the HSE. Which HSE count, if any, would she have appeared in had she not taken the initiative to go to "Dublin"? The problem for the HSE and the Minister lies in that question: how many more Marys are out there? What Mary got from Portlaoise was a "false negative", ie a false all-clear. In early September, in the commotion surrounding the announcement of a review of thousands of mammograms and ultrasounds carried out in Portlaoise, a senior HSE executive told The Irish Times that the problem there was one of "over-diagnosis"; in other words, some women had received "false positive" results. No woman, to her knowledge, had had "a missed diagnosis" at the hospital.
Yet the seven "misdiagnosed" women uncovered in the review are, like Mary, all false negatives - missed cancers - and were obviously revealed by chance, since the HSE evidently, was looking for false positives. The review goes back to November 2003, so it is entirely possible that some of the "misdiagnosed" women have been suffering from undetected cancer for many months. These delays have potentially catastrophic implications.
WHILE THE TAOISEACH, in a stunningly graceless and ill-informed response to the Dáil, tried to absolve himself and his Government of blame by insisting that the fault lay in human error rather than in the system, anyone paying even cursory attention since last May would beg to differ. There is no national cancer audit for this or any period; a proposed new model was published in the spring and remains to be implemented, so people cannot draw their own conclusions. However, in the past six months, no fewer than four separate reviews have been instigated into Irish breast cancer services, involving six hospitals around the country.
In May, Rebecca O'Malley, a 41-year-old mother of three from Co Tipperary went public about the misdiagnosis of her biopsy at the cytology department (in which cells are studied) in Cork University Hospital (CUH), which led to a 14-month delay in her treatment.
Under intense public pressure, an external review into the Mid-Western Regional Hospital's symptomatic breast disease services (of which O'Malley was a patient) and CUH's pathology services was ordered by the HSE and the Minister for Health, Mary Harney. The report from the Health Information and Quality Authority (HIQA), due this month, will include a further 28 patients recommended for reassessment by O'Malley's breast consultant.
In early August, it was revealed that another Tipperary woman had been misdiagnosed when tissue samples taken at the private Barrington's Hospital in Limerick were sent to the lab at University College Hospital Galway (UCHG) in September 2005. Her treatment was delayed by 18 months as a result. A HIQA review of UCHG pathology services is due at the end of the year.
The level of official concern was such that Barrington's hospital was asked by the Department of Health in August to cease breast cancer services after concerns were raised about the treatment of 10 patients in particular. An investigation of all care given to breast cancer patients who attended Barrington's since September 2003 has begun and is chaired by Dr Henrietta Campbell. In September, 13 public hospitals were told to immediately stop treating breast cancer patients.
On August 31st, the HSE announced a review of around 3,000 mammograms and ultrasounds at the Midland Regional in Portlaoise. So far, we know that seven women were misdiagnosed there and are suffering from cancer.
HIQA then began a review of breast cancer services across the State.
Yesterday, the HSE named 20 breast cancer treatment centres whose standards it is prepared to stand over. In effect, this amounts to an admission that the national health authority has been presiding over units in which it has no confidence.
In a side issue, it emerged that HIQA has no power to investigate Barrington's Hospital, because private hospitals in this country are independent fiefdoms. As the Minister herself has said, you need a licence to own a dog, but not a hospital.
In the furore, the spotlight has been trained on the Department of Health and the HSE. Written warnings by concerned medics about staffing levels, consultants' qualifications and outdated equipment have been leaked. Politicians have complained bitterly about the difficulty of communicating concerns to the HSE.
A clearly exasperated Charlie Flanagan, Fine Gael TD for Laois-Offaly, talks about the problem of constituents' concerns being "entirely blurred in a fog of bureaucracy in the labyrinthine maze of the HSE . . . As a public representative, if I want to discuss a day-to-day problem and I get on to a hospital administrator [ in Portlaoise], I'm referred to Tullamore [ the former headquarters of the Midland Health Board]. They then tell me that their budgets are arranged in Naas and that I'll have to speak to the mandarins there. You get on to Naas and find then that you're in Prof Brendan Drumm's massive bureaucratic empire. I've written to Prof Drumm in the past and got no reply.
"It was a small thing about the hospital car park, after I had seen relatives of a deceased person fumbling desperately in their pockets for €2 coins while the hearse with the coffin was disappearing down the road and round the corner. The old Midlands Health Board at least had an element of accountability; you got a reply, an update, reasons . . . We're the fall-guys in all this. Mary Harney's idea of the HSE was to take local politicians out of the equation."
Some would say, however, that there were perfectly good reasons for removing local politics from the health arena. In view of recent events, few politicians now would dare to quarrel with the notion of "centres of excellence". Some insist they never disagreed with them; what they do not say is that they agreed with them providing the centre was in their bailiwick. In that sense, the context around the Portlaoise hospital debacle is a microcosm of local hospital politics that have paralysed the country for decades and played a starring role in the current situation.
In April 1998, consultants and doctors from Portlaoise hospital, as well as supporting GPs, were among 6,000 people who took part in a rally to protest against the proposed location of a midlands cancer centre in Tullamore, as recommended in a report by Prof Donal Hollywood.
A flavour of local feeling can be gleaned from one banner: "Tullamore pirating Laois services." Another banner accused local TD and then minister for health Brian Cowen of poaching the prize for his own home town, less than 20 miles away: "This is Cowengate and we won't stand for it." Local Fianna Fáil TDs John Moloney and Seán Fleming, along with Charlie Flanagan, spoke out strongly against the proposal. Said Flanagan: "We totally reject the Hollywood report and will be voting against it and we will be trying to convince others to do so. Laois people are taking to the streets for fair play and justice . . ."
THE NATIONAL CANCER Forum had made it clear that fragmenting services was nonsensical. Back in 1995, a young Prof Hollywood, newly-appointed Marie Curie professor of clinical oncology at Trinity College Dublin and consultant oncologist to St Luke's Hospital, Dublin, festooned with distinguished awards and fresh from the Baylor College of Medicine in Houston, Texas, was already stressing his belief that spreading the cancer services among a small number of small centres would dilute existing expertise and resources.
Unlike many of the players involved, he had no vested interest when, as regional director of cancer services for the Midland Health Board, he chose Tullamore as the Midlands Cancer Centre. "Tullamore made sense," he says now.
"I strongly supported the development of services there. I indicated that all significant future services should be developed at Tullamore in keeping with the national strategy." The reasoning was simple: "It was about equitable access and the unique opportunity to develop optimal cancer care for patients."
Taking Longford and Westmeath catchments into consideration, Tullamore was the obvious geographical choice. He had the full support of the CEO of the Midland Health Board, and of senior management. Others, however, had a more partisan agenda. "Clinicians and board members would argue that the choice of Tullamore would lead to the downgrading of their particular hospital, and that was more important to them than the development of cancer services," he says in his customary cautious manner.
There was nothing civilised about many of these "discussions". One board member recalls that after a public meeting in the Killeshin hotel in Portlaoise, Prof Hollywood needed a police escort to his car. Another remembers an attempt to remove him from the medical board in Portlaoise hospital. Despite his position, qualifications and international recognition, local politicians challenged his capacity to advise anyone on the development of cancer services. The view "what we have, we hold" held sway. "What was there," recalls a health board member, "was a small breast cancer unit with one surgeon with an interest in breast cancer, no triple assessment, no dedicated pathology services and very limited radiology services. I've noticed around the country that medics themselves, when they or their families are in trouble, will studiously avoid small units and head straight for the large teaching hospitals."
Prof Hollywood prefers not to dwell on that time and says he had almost forgotten about it (a condition possibly induced by subsequent wars over his landmark 300-page Radiation Oncology Services report in 2003, which outlined the radical proposal to develop a national network of world-class comprehensive cancer centres - a pivotal cornerstone of the 2006 Strategy for Cancer Control in Ireland).
BY 2002, DISCUSSIONS had moved on to proposals to explore a split-service breast cancer unit between Portlaoise and Mullingar - this, in a region with a total of around 100 cases a year, the minimum required caseload for any one unit expected to maintain state-of-the art expertise, in a region with only a marginal argument for one breast cancer centre.
"I remained opposed to that," says Prof Hollywood. "I thought that would be associated with huge risk . . . But I think the board got to the point where they were prepared to move forward with that virtual two-centre model, partly because local clinical groups and politicians were prepared to do nothing else." In his view, there was never an "ability or the appropriate opportunity" to fund the breast cancer service in the midlands because of the persistence with the split model, which contravened not only the national cancer strategy but accepted international practice.
In September 2004, in a letter responding to concerns about midlands breast cancer services, Prof Hollywood laid his views trenchantly on the line: "It must be stressed that if a split service proceeds with either single or dual assessment of patients, with no aspiration [ a type of biopsy] or cytology service (and this is the basis for selection of patients that are then sent to the regional unit), there will be a significant false negative rate (ie a significant number of missed cancers). I feel this will be indefensible." To this day, Portlaoise hospital has no aspiration or cytology service and relies on mammography and open/core biopsies for breast cancer diagnosis. The suspension of mammography services at Portlaoise continues.
Meanwhile, the new hospital in Tullamore is complete and the new dedicated regional cancer centre is open. Specialists in medical oncology, haematology, radiology and pathology are located there. Almost everything is in place for a modern regional cancer centre - except for a breast cancer unit.
In a further ironic twist, clinical representatives from both Portlaoise and Mullingar hospitals acknowledged, in late 2006, that the preferred future location for the development of the breast cancer services would optimally be at Tullamore - the hospital location that Prof Hollywood had suggested many years previously.
He repeatedly returns to the big picture, because this clearly is not merely a midlands phenomenon: "The big picture is that we cannot allow local clinical or local political belief to unfairly shape the future of optimal development of cancer services in the country . . . In a very significant way this has contributed to the present system, where in many areas we are almost 10 years out of synch with what has happened in most other European countries in terms of reform and, ultimately, in the provision of cancer services for patients."
Last Monday, on Midlands 103, Faulkner did not ask "Mary", the breast cancer patient, whether she had ever campaigned for her local hospital. He did ask, however, whether she agreed with Prof Brendan Drumm's comment that people campaigning for such services in local hospitals were doing themselves a disservice. "Yes," she replied. What it proved to her, she said, was that "there is excellence in Dublin. I'd back him up."