FOR years, activists campaigning for improved cancer services have argued the obvious: patient outcomes are reflected in access to quality treatment.
In May 2004, a report by the National Cancer Registry (NCR) — a statutory body which records and analyses the prevalence of cancer in Ireland — gave weighty backing to these claims.
The report, titled Patterns of Care and Survival from Cancer in Ireland — 1994 to 1998, showed major survival differences and disparities in treatments given for more common cancers between the then different health board regions.
Patients living in the then Eastern Regional Health Authority (Dublin, Kildare and Wicklow) were more than twice as likely to have radiotherapy for bowel cdancer as those living in the Mid-Western Health Board (MWHB).
For patients diagnosed with cancer within the period, survival rates were 33% poorer for breast cancer patients in the Southern Health Board (SHB).
For female colorectal patients living in the Western Health Board, survival rates were 31% poorer.
Male colorectal cancer patients living in the South-Eastern, Southern, Mid-West and Midlands health boards had a 21% to 36% poorer survival.
The report said it was “striking” that survival in the ERHA tended to be better than in most other areas, even after taking patient age, stage of cancer and tumour factors into account — in stark contrast to the SHB and MWHB, with consistently poorer-than-average survival rates.
In September 2004, a second report from the NRC and the Northern Ireland Cancer Registry, entitled All-Ireland Cancer Statistics 1998-2000, concluded differences in cancer incidence and death rates between different regions probably reflected not just differences in lifestyle choices and/or public health initiatives, but in healthcare systems.
Recently, in reply to an Irish Examiner query about the level of cancer services available in each Health Service Executive area, the HSE conceded the NCR report had “established that there are clear differences in treatment and survival depending on area of residence”.
Tánaiste and Health Minister Mary Harney recognises this. At the recent launch of the Government’s latest cancer strategy — A Strategy for Cancer Control in Ireland 2006 — she said the key objective of any cancer care plan would be that “all patients, irrespective of county, region or personal financial means, can be assured of the best cancer care and the best chance of surviving cancer”.
Noble sentiments, but for many who have voluntarily dedicated their lives to improving cancer services, tirelessly fundraising to shore up the gaps the Government has failed to plug, Ms Harney’s aspirations are meaningless without the money to drive them forward.
Take cancer patients living in Co Donegal, for instance, where those in need of radiotherapy must travel to either University College Hospital Galway (UCHG) or St Luke’s in Dublin for treatment.
Most travel to St Luke’s and a round trip can take seven to 10 hours for the often gruelling treatment.
In 2003, the former North-Western Health Board (NWHB) spent €148,064 to ferry patients in need of radiotherapy to St Luke’s Hospital in Dublin, the highest spend of any health board in the country.
That same year, publication of the Report on the Development of Radiation Oncology Services in Ireland, aka the Hollywood report, offered no comfort. It recommended centralising radiotherapy services in Dublin, Cork and Galway and using Belfast City Hospital to give radiotherapy to patients in the north-west. This suggestion was not popular with cancer patients in the north-west, travel again being a major factor.
Consultant surgeon at Letterkenny General Hospital Kevin Moran said rather than travel for treatment, women with breast cancer, particularly those with families who did not want to spend time away, were having lumpectomies and mastectomies. To add to the woes of women in the north-west, they are also without access to the so-called “national” breast screening programme, BreastCheck, which has yet to be rolled out nationally, despite operating in the east, north-east and midlands since 2000.
The level of anger at the gaps in treatment services in Letterkenny manifested itself most recently at a well-attended protest rally in May. Organised by the Donegal Action for Cancer Care committee (DACC), up to 6,000 people turned out to demand improved cancer care services. Those in attendance heard horror stories about mothers forced to rouse children with cancer from their sleep at 2am in order to travel to Dublin for blood tests at 8am.
Patients in the south-east are similarly disadvantaged in terms of access to radiotherapy. They must travel to Cork or Dublin, yet there is no dedicated transport system in place.
A statement from the HSE South-East said patients referred to Cork or Dublin receive transport assistance from the HSE in about five cases per week. It was unable to say how much is spent on this assistance. When transport is arranged, it is by ambulance or minibus or, “in exceptional circumstances”, by taxi.
Patients leaving from Wexford General must be at the hospital for an 8am departure if travelling by minibus to Dublin. For terminally-ill patients attending St Luke’s in Kilkenny, the minibus leaves for Dublin at 7.30am.
For patients who make their own arrangements, many are forced to rely on local cancer charities to help meet transport costs. This arrangement has been encouraged by the health authorities “because of the flexibility and quality for the patient and the economical cost”.
The Cancer Care Alliance (CCA) is perplexed that a sub-committee set up by former Health Minister Micheál Martin in the wake of the Hollywood report — to look at travel arrangements for cancer treatment — seems to have fallen by the wayside.
In the meantime, transport arrangements vary wildly around the country, with Dublin-based patients faring best. Patients of the Dublin South and Dublin North-East hospitals group, including Beaumont, Connolly, the Mater, St Luke’s and St James’s, are generally well provided for, with each of these hospitals meeting the cost of travel for patients with cancer.
This contrasts sharply with the situation for patients of hospitals in the North Eastern Hospitals Group, including Our Lady of Lourdes Hospital, Drogheda; Louth County Hospital, Dundalk; Cavan General and Monaghan General, where the HSE neither provides a dedicated transport service nor funds any transport costs. Patients from this region in need of radiotherapy must travel to either St Luke’s or the Mater Hospital, both in Dublin.
The HSE is “aware of the current discrepancies between regions regarding the provision and costing of patient transport services”, it said in a statement to the Irish Examiner.
“There is no national policy with regard to this matter,” the statement said, adding: “However, we are initiating a patient transport needs analysis this year.”
This process, the HSE said, will involve direct discussions with patient representative groups and will enable the HSE “to determine a national policy on patient transport that will establish equity and uniformity of access across the country, regardless of location”.
“Equity” and “uniformity of access” have become frequently recycled Government and HSE buzzwords when it comes to pledging improvements in cancer care. But they ring hollow in the ears of many patients and their families.
In the south, Cork University Hospital (CUH) offers comprehensive cancer treatment, including chemotherapy, radiotherapy and surgery but it has been beset by problems due to under-resourcing.
In March 2005, award-winning cancer specialist Dr Oscar Breathnach announced he was quitting CUH after four years of campaigning unsuccessfully for a dedicated in-patient cancer ward. He left behind just one permanent medical oncologist, Dr Seamus O’Reilly, in an area with a population of 580,000. In November 2005, Dr O’Reilly wrote to Ms Harney expressing his concerns about the quality and safety of cancer care in the HSE Southern Area.
There were four acute hospitals in the region providing cancer care and none had a dedicated seven-day in-patient ward, he said. He described receiving phone calls from families whose loved ones could not be accommodated in CUH and how one woman was left at home in pain over the weekend because the only alternative was to admit her on a trolley through A&E.
He wrote: “Our region has been historically under-resourced. We are now reaping the harvest of this legacy. Because of this geographical discrimination, more extensive surgery, more extensive radiotherapy, more extensive chemotherapy, more extensive hormonal therapy are needed for those with breast cancer in Cork compared to Dublin.
“It has been calculated that 65 women a year are dying in Ireland because we lack breast cancer screening in the west and south.”
Dr O’Reilly also referred to the unequal distribution of consultant posts. Since Dr Breathnach’s departure, two locums have occupied his position: the first was contracted for six months and chose not to renew his contract. A statement from the HSE South said it will shortly advertise for a third medical oncologist, having received funding from the National Hospitals Office.
A HSE response to a query from the Irish Examiner shows cancer patients in Dublin, Kildare and Wicklow have access to more than four times the number of cancer specialists — 20 in all — than people in the rest of the country. The next highest number in any HSE area is five. Admittedly, the eastern region takes cancer patient referrals from outside its own area — and it has the highest population concentration of 1.4 million — but even at that, it has a disproportionate number of cancer specialists.
There are also huge disparities in the number of dedicated cancer beds for in-patients throughout the eight HSE hospital networks.
Following Dr Breathnach’s resignation from CUH, a 10-bed medical oncology ward finally opened at the hospital in January 2006. Approval has been secured to proceed to the next phase of development for a €47 million oncology, cardiac and renal unit in CUH, which will include a dedicated 30-bed oncology ward. Construction is scheduled to begin this year.
In total, there are 40 dedicated cancer beds in the HSE Southern hospitals group. There are also five dedicated isolation rooms and seven hostel rooms.
However, the figure is extremely low compared to the HSE Dublin South and Dublin North-East hospital groups, which between them have a total of 268 dedicated cancer beds. This includes St Luke’s cancer hospital and accommodation lodge (179 beds), but nonetheless the figure is more than six times that of the southern hospitals group.
Elsewhere, the HSE South-East hospitals group has 16 dedicated beds and the west/north-west groups have 24 each. Not a single dedicated cancer bed exists in the HSE North-East hospitals group, where, as already highlighted, no money is available for patient transport costs.
The HSE says it is committed to bringing about significant reform in the delivery of high-quality cancer care on a consistent national basis.
It says the first national cancer strategy, published in 1996, contributed to considerable progress in cancer services and that the death rate from cancer in the under-65 age group was reduced by 15% by 2001, three years ahead of the target set in 1994. It also says that since 1997, there has been a cumulative investment of approximately €920m in the development of cancer services, allowing the appointment of an additional 110 cancer specialists and 330 clinical nurse specialists in cancer services.
In July last year, Ms Harney announced approval for a national network of radiation oncology services, based largely on the Hollywood report. According to the HSE, this will commence within the next two years. The Health Minister has asked the HSE and the National Development Finance Agency to develop public-private partnership arrangements to design, build, finance, maintain and partially operate the proposed services.
The plan consists of four large radiation oncology centres in Dublin, Cork and Galway (building on existing services) and two integrated satellite radiation oncology units in Limerick Regional Hospital and Waterford Regional Hospital. The Limerick unit is already in place, thanks not to the Government, but to the vision of former Mid-Western Health Board chief executive Dr Stiofáin DeBurca and the Mid-West Hospitals Development Trust. This charitable entity, through the generosity of local businessmen such as JP McManus, raised €8.6m to build the new centre, which opened last October.
Presented as a fait accompli to the Government, it forced a change in Government policy, according to Limerick East Fine Gael TD Michael Noonan.
The Government only endorsed additional satellite units in Limerick and Waterford when it became apparent campaigners for improved cancer services in both areas were intent on coming up with a local solution, with or without Government approval.
“The Government’s whole policy was for centralising services in Cork, Dublin and Galway but Limerick did it by themselves. It was against Government policy at the time; those behind the centre only asked for permission to run it and the Government couldn’t refuse that,” Mr Noonan said.
However, what the Government could refuse was funding and to date, despite the centre treating a mix of public and private patients, not a penny in funding has been forthcoming. Public patients are largely dependent on the trust to fund treatment, which Mr Noonan estimates will cost €2m a year.
The Government has also failed many women by the ongoing delays in rolling out BreastCheck, available in the east, north-east and midlands since 2000. The serious consequences of this delay cannot be underestimated. Experts say it has resulted in 65 deaths a year in the south and west, where the free screening service is not yet available.
An all-Ireland survey of cancer rates published in September 2004 found death rates from breast cancer did not change in the Republic between 1994 and 2000. However, in the North, where nationally-sponsored screening programmes have been in place since 1993, death rates fell by one-fifth. At this stage, it is unlikely the breast screening service will be operational in either the south or west before 2008.
Similarly, a cervical screening programme has been available free of charge in the mid-western region since 2000, but this has also yet to be rolled out nationally. On June 12 last, speaking at the launch of the new cancer strategy, Ms Harney said her goal was to have an Irish Cervical Screening Programme (ICSP) rolled out nationally by 2008, with the caveat that it be “based on an affordable model”. She also promised to establish a National Cancer Screening Board to amalgamate BreastCheck and ICSP to deliver both programmes nationally.
The strategy warns that shortages of personnel in the cancer workforce are limiting capacity and impairing the quality of service to patients.
To overcome these difficulties, the authors of the strategy — the National Cancer Forum — have called on the HSE to develop a National Cancer Workforce Plan to support the operational planning needs of the cancer system.
However, it warns, smaller hospitals around the country may have difficulty adapting to changes in the delivery of cancer care due to “too low a caseload to maintain clinical expertise in the use of complex diagnostic and treatment techniques, staff training, quality assurance and risk management strategies”.
The strategy recommends the establishment of eight centres of excellence within four networks as the way forward for improving patient care and equity of access.
However, the location of these centres, the cost of implementing the strategy and the timeframe in which it will be done have not been specified. The HSE is due to produce a programme, headed up by a national programme director and with a single national budget for all cancer control activities, to drive the strategy forward.
All this activity takes place against the backdrop of another NCR report, published on June 7, which predicted that cancer numbers will increase from 22,000 a year at present to 42,000-43,000 by 2020 and that the number of potentially-fatal cancers will more than double, from 13,800 to 28,800, HSE chief executive Professor Brendan Drumm said implementation of the new strategy would “deliver a world-class cancer service”.
“This new strategy and the implementation of our National Cancer Control Programme will give us the means to provide a service that meets the highest international standards, that improves the outcomes for patients and is equitable and accessible to every citizen,” he said.
Equity and accessibility: words liberally quoted but rarely delivered upon.