Cancer in a Cold Climate

by Enid O'Dowd

  Patient safety issues have already emerged in relation to contracted out pathology services. The Finnish experience shows that outsourcing has led to delays in accessing test results, while doctors’ inability to consult remote laboratory personnel has also contributed to a fall in the quality of care. Here, general practitioners and lab scientists have expressed strong reservations about the quality of American lab testing and its incompatibility with Irish screening norms. Large numbers of women are now being subjected to more invasive cervical cancer tests, due to the inability of US lab technicians to distinguish between different grades of test results.

  Patient safety and the ‘smart economy’

  In the new R&D environment, patients face the hazards of testing. The ‘smart economy’ requires human guinea pigs. However, meeting the needs of the biotechnology industry raises issues of patient health and safety. New machines and new software need patients for proving. Computer errors, though rare, can be lethal. New generation linear accelerators, for example, are extremely powerful as well as being highly complex. While advanced radiation therapy allows doctors to more accurately target certain tumours, it also involves very high doses of radiation.

  Drug testing is equally fraught with danger. While patients may be tempted by the promise of early access to leading edge drugs, animal-to-human testing is extremely perilous. Even trials testing dosage can be risky. A recent cancer drug trial in Cork, for example, ended after three healthy volunteers collapsed and had seizures at the Shandon Clinic. Eight others also reacted adversely, but not as badly, to higher doses of Rimcazole, a product on trial for a drug development company.

  Even after they come to market, new therapies may still be risky. Many of the newer cancer drugs, such as Avastin, are highly toxic. Drug side effects may be under reported, however. Industry-sponsored research tends to draw pro-industry conclusions, potentially endangering patients.

  Out of pocket

  The other main risk to patients is to their purses. Privatising health care will undoubtedly bring new financial burdens. The rules that govern benefits and entitlements are being re-drawn: the 1970 Health Act is being re-written, giving almost unlimited opportunities for cutbacks. Private health care carries a hefty price tag. Recent history suggests the government will shift as much of the cost as possible onto patients. Witness the Unfair Deal, introduced in 2009, that spelled the end of free nursing home care for older people.

  Private labs, unlike public hospitals, will almost certainly charge for their services. The shift from hospital to community care will also result in out of pocket expenses. General practitioner services are free only to medical card holders, and primary care centres run by companies are likely to charge for services once provided free to public hospital outpatients.

  The state itself may be out of pocket. Private hospitals have a way of draining the public purse. Going into partnership with the private sector is a hugely expensive way of providing infrastructure: it is far cheaper for the state to fund the build itself. Cost over-runs are extremely common in PPPs. Take the capital cost to the public purse of the six oncology units. The bill was originally estimated at around €400 million. A year later, the capital cost of these radiotherapy centres had jumped to €550 million, plus €72 million annually in running costs. PPPs have brought NHS institutions to their knees in recent years in Britain. Many services are slated to close as hospitals struggle to pay spiralling debts to health care corporations.

  Health services supplied on a commercial basis cost more. It is far cheaper for the state to supply a health service directly than to pay a provider to do it. Marketing, billing, shareholder dividends plus a healthy profit margin are all factored into the prices charged by these companies. Overcharging is rampant: in the American hospital industry, the mark-up for surgery is 1,000 per cent, while the mark-up for medical supplies rises to a stagggering 5,000 per cent. This is how the most expensive hospitals in the US make their money. But if American hospital chains have brought this culture with them, bankruptcy looms.

  The spectre of fraud

  There is, finally, the spectre of fraud. Many American health care companies operating in Ireland have a background in fraud in the US. From 1998 to 2002, UPMC paid almost $20m in fraud fines to the US Justice Dept to settle allegations of insurance fraud. Such allegations tend to be disputed by companies, who claim that government insurers interpret the reimbursement rules differently. Nor is our government fazed by such fines. HSE awarded the national cervical cancer testing contract to Quest in 2008, following reports in the Irish media that the company had repeatedly been fined under the False Claims Act. From 1996-2004, Quest paid over $150m to the US Justice Department to settle allegations that, among others, the company had billed government insurers for medically unnecessary tests and overcharged for cancer blood tests. Fraud is a huge fiscal issue in the US: up to 10 per cent of the American health care budget is swallowed in scams every year.

  Guinea-pigging

  Health ‘reform’ is synonymous with privatisation. It is driven, not by evidence, but by ideology, belief in a model that has failed spectacularly: the market model. Nourishing the private sector requires starving public services. Nearly all human scale hospitals, with the exception of for profit entities, are to close. Strategic management has produced reports, such as Teamwork, and devised tactics, such as the chronic disease strategy, all dovetailed, seamlessly, to secure public hospital cuts and to grow the market for the private health care industry. HSE has now reconfigured itself. Divisions that previously existed between community care and hospital services have recently been abolished. Now there are only two departments: reconfiguration (cuts and closures) and integration (privatisation).

  Health policy in Ireland is in danger of becoming a tool of economic policy. Pharmaceuticals, biopharmaceuticals, medical devices and diagnostics were worth over €44.4 billion in exports from Ireland in 2008. A new business-led alliance was set up in 2009 to drive the growth of the life sciences sector. The alliance, headed by Pfizer, will consist, among others, of industry representatives and ‘the hospital system’.

  Hospitals, universities and corporations are opening up new networks along American lines. In a capitalist society, money drives all. The knowledge economy could well see increased pressure on patients to take part in trials. Cancer patients in Northern Ireland, for example, are routinely enrolled in drug trials. However, while ‘innovation’ needs volunteers, guinea-pigging for companies carries distinct dangers. The risks for patients of being treated in hospitals where new machines, new software and new drugs are constantly being tested may well outweigh the benefits.

  Even the gains for society of such an approach are far from clear. Stem cell research, for example, has been oversold. Of the almost 700 gene therapy trials approved in the US, not one has yet resulted in drugs approved for use in patients there or in Europe. There are also cost and sustainability issues: most, if not all, of the new cancer drugs are prohibitively expensive. Therefore, while the new medical-academic-industrial complex serves professional and business interests, the benefits to patients and communities are less evident.

  The plan to close St Luke’s centres on creating business opportunities for powerful interests that serve market imperatives, not patient welfare. Waiting in the wings are friends of friends and families of families, all hoping for their earthly rewards. Our health system is being recast in an American mould. We are witnessing a massive experiment driven, not by science, but by greed.

  II LIFE IN ST LUKE’S: PATIENT STORIES

  Life in St Luke’s: Patient stories

  Patients and their families want to talk and write about St Luke’s and in this Section and in Section IV we feature a selection of the stories submitted.

  Some former patients like 78 year old former St Luke’s patient Pam O’Connell are so grateful to the hospital that they are prepared do anything to save it. Pam chose to sky dive for St Luke’s. Pam explained her action to John Murray on
his RTE radio show on 16 September 2010. Six years previously, four months after she was widowed, she had received a cancer diagnosis but ‘Luke’s gave me my life back’ and ‘I wanted to give something back.’

  Even where their loved one died, our writers are still full of praise for St Luke’s.

  We feature three stories where cancer struck under the age of 30. Happily, all three young people had a good outcome and are alive today.

  Prostate cancer is on the increase and is featured in several stories. It is very treatable if caught early, as Deputy Ruairi Quinn, a former St Luke’s patient, reveals in his Dail speech (p.90).

  Supporters also wrote on our Facebook page Save St Luke’s. Some of these contributions are featured on p.66-69. At time of going to the printers, we had over 16,000 members on Facebook.

  We read so many stories about less than adequate treatment in our public hospitals. We hear of long trolley waits and of medical staff too busy and stressed to comfort patients. St Luke’s is the hospital that bucks the trend.

  Yet the Minister seems determined to close it.

  ‘Our government, bereft of inspiration and floundering with a dysfunctional health service, have decided that this 50-year-old unique and irreplaceable gem of a facility should be closed; stripped of its assets and absorbed into the HSE monster––’

  When I first heard last year that I was going to St Luke’s Hospital in Dublin, I had no idea what I was facing. In my younger days, I had heard that St Luke’s was a cancer hospital and that the only way you came out of it was ‘in a box’. Now, suddenly, I was a bowel cancer ‘victim’- how I hate that term- and was destined to undergo 10 weeks of radium and chemotherapy treatment in St Luke’s. I faced the journey from Donegal with trepidation, climbing aboard the Friends of Letterkenny’s free Mercedes bus at 9.00 am one rainy October Monday morning.

  The bus was originally a 30-seater but converted to transport 24 patients in comfort. Sitting down was akin, I can only imagine to sitting in a Formula One wrap-around seat and the on-board toilet was a great reassurance. The bus delivered me to the front door with a good comfort stop of half an hour, making the journey a pleasant one. There, I alighted with the words of my fellow travellers fresh in my mind; ‘don’t worry, St Luke’s is a great place’, ‘it’s like a hotel for sick people’, ‘it’s like a healing hotel’.

  I knew things had changed and medicines had improved but I was totally unaware that I was about to undergo a unique experience. I had never spent a night in hospital in my life and I was now 52 years old. To me, a hospital was a hospital and certainly not a nice place to be. Being little better than a prison for the unwell.

  One of the first things I noticed when I went in the front door was the striking works of art that adorned the walls. Their display in all the airy corridors was no accident. There has been much thought and effort put into the purchasing of these works and they do indeed have a therapeutic effect, as is the intention. This Art Therapy is the first visible emblems of what St Luke’s stands for when one enters.

  Within two days of my stay, I was struck by the community spirit that prevails. Everybody was involved and committed to making the patients’ stay there as comfortable and comforting as possible.

  And people do not go there to die; St Luke’s is no Last Chance Saloon; many patients survive to pay testimony to this bastion of a caring society that we are fast losing. Unfortunately for me, since I left St Luke’s, I have developed cancer spots in my liver but the hope and spirituality I discovered there will help me to a positive outcome. I have no doubt that if I have to leave this world before what most people consider is an average lifespan, my stay in St Luke’s will have extended my life beyond expectations for someone in my position.

  The corridors, wards and visiting rooms are filled with hope and smiles, reassurance and positivism. There is a community feeling that you get within the walls of this lovely place; walking down the long corridor in the main building is like walking down the main street of any village in Ireland:

  ‘Hello, Mary, how are you today?’

  ‘Howya, Pat! You’re looking good this morning!’

  ‘Hey, Johnny, have you time for a cup of coffee before your treatment?’

  The meetings and greetings come from doctors, cleaners, care assistants, consultants, receptionists, nurses, patients and catering staff; everybody has one mission in their day; to deal with getting on with living.

  Without the walls, St Luke’s boasts well-tended grounds, with a two kilometre walk for the more energetic. There are garden seats, gazebos and waterfalls and you can lose yourself in this quiet oasis of peace in the heart of Dublin city; this is holistic healing. Therefore, there is a certain spiritual aura around St Luke’s that cannot be replicated, never mind transferred.

  Certainly, I soothed my nerves and fears, and those of the people that visited me, by strolling through St Luke’s lovely garden. I spoke with the angels there, my dead mother, the ghosts of past patients and I absorbed hope and healing powers that I never knew existed in hospitals.

  Many of you reading this will know what I am talking about and many survivors will cherish the camaraderie and spirit of St Luke’s. Testimony as to how close it is to the people’s hearts is that over €26 million was raised by ongoing voluntary funding since 1980 by the people in the street to help run the services.

  No other public hospital can generate such gratitude for services rendered.

  And now, in 2010, our government, bereft of inspiration and floundering with a dysfunctional health service, have decided that this 50-year-old unique and irreplaceable gem of a facility should be closed; stripped of its assets and absorbed into the HSE monster.

  I had experience of this dysfunction when I had to leave St Luke’s care. On New Year’s Day 2010, I was rushed to St James’ for an emergency procedure to remove a PICC line which had malfunctioned from my chest. Despite my consultant ringing ahead to ensure that I was ‘fast-tracked’, I spent eight hours on a trolley in a chaotic A & E Department, where I was visited over time by at least six different medical personnel.

  My cancer condition meant that I needed regular and speedy access to a toilet. When I eventually found a facility, having left the trolley on my own accord and worked my way through a labyrinth of corridors, I was prevented from using it for twenty minutes by a prison warder as a prisoner was availing of the same facilities and had priority.

  No doubt, the HSE would argue that this will not happen when the new designated centres are up and running but I do not believe them.

  Look at what happened in Galway to that poor woman who needed admittance to the ‘centre of excellence’ there. She was left on a trolley for 25 hours despite already being a patient of the cancer centre.

  Is this the type of health service future cancer patients will get in St James’s when St Luke’s is thrown to the wolves?

  But back to my James’s experience.

  When I was eventually admitted to a ward, I asked for a towel so that I could wash and clean myself (my experience with the toilet facilities had not been successful due to the delay in being allowed in). I was informed that there was no towel available as it was a bank holiday and that I would have to make do with a disposable sponge. I was wired up to a heart monitor and was offered no help with desperate attempts to clean myself; the overrun staff were too busy. I lay in bed for two days waiting for the medical team to return from their holidays and deal with my ‘emergency’. I never saw the outside world in those two days. I was a ward-bound prisoner despite having the ability to walk about; I could not leave the ward in case they ‘lost’ me. How I longed for a bit of putting practice on St Luke’s golfing green (Oh, did I mention that facility?)

  Despite priding myself in being a strong, stubborn and cheerful person in the face of adversity, I returned to St Luke’s a broken man, having been stripped of my dignity and positivism, my trust in the general Irish medical system destroyed forever. There, I literally hugged, was hugged
and consoled by the nurses in St Luke’s on my return and they brought me back to living, instead of dying, over the next weeks.

  Nothing can convince me that St James’s will ever come close to delivering the type of care that I got in St Luke’s. Does that visit to St James’s count as a successful ‘outcome’ that the politicians are so sure that hospital can deliver down the line to all cancer patients? If a positive mentality can heal just as well as medicine, then St Luke’s would get top marks in any ‘outcome’ survey for instilling that mentality.

  St Luke’s is an actual existing, recognised and functioning ‘centre of excellence’, as opposed to an envisaged ones that this lame government so yearns to establish. Thus, the government will be doing away with a well established and much appreciated centre of cancer services in favour of new unproven ‘centres of excellence’ around the country; all in the name of so-called progress. This will result in a dilution of the expertise of the experienced staff, who will be swallowed up by the HSE monster.

  And they talk about this monster embracing the ethos and holistic healing that prevails in St Luke’s. What utter rubbish.

  The ethos, the positive aura, the calmness, the immeasurable benefits of this haven of spirituality and dignity will be lost forever once they change one little thing in what is the people’s hospital. Priceless, unaccountable assets will go, scattered to the four winds, and why? All because, it is the opinion of six so-called ‘experts’ and the experience of Mr Keane in his work in Canada.