Cancer in a Cold Climate

by Enid O'Dowd

  I would like to follow the example of Senator Fitzgerald because nothing makes the case more clearly than the direct personal experience of patients. I beg the indulgence of the House to read a few paragraphs from a remarkable letter I received from a patient who pays tribute to the services, in much the same way as I pay tribute also to the services provided by ARC, in Eccles Street, which provides care facilities and residential accommodation for families and people from the country who need to come to Dublin to avail of cancer treatment services. I spoke at the opening of that remarkable facility. This is a letter from somebody who is also with us in the Visitors Gallery. She says: If you are wondering what my involvement with this wonderful hospital is, my father spent his last weeks there. And it was to my great amazement and relief that he and us his family were treated with such care and dignity, and that there was space for us to stay with him, so he was never alone in his last days. I and my family are the lucky ones. I have heard many tragic stories of people who were not lucky enough to end up in St Luke’s. One of the hospitals Minister Harney’s experts have designated as one of the Centres of Excellence is Beaumont Hospital. I brought my father there many times. He hated it there. He was traumatised by the crowds and the noise there.

  Most interestingly, generously and appropriately she goes on to say:

  ‘I would point out that the staff were hard-working and wonderful there, apart from the young woman from accounts who handed my (fully VHI-paid up) father a bill for his treatment — this happened the first morning he sat outside his bed in the high-dependency ward after an arduous invasive operation. The anxiety he experienced because of that young woman cost his health dear. Beaumont also forgot to carry out a follow up scan on my father, which meant when his cancer was found to have returned, it was by then impossible for the surgeon to fully remove the tumour. I cite all these incidents, not because I want to knock Beaumont, or the Cancer Control Strategy, but merely to point out that no hospital is perfect— certainly none in Ireland right now, but I will say that St Luke’s, while only able to provide certain kinds of cancer care, is streets ahead of both Beaumont and the Mater in terms of patient comfort as far as my father experienced it.’

  Some of the other points made in the letter I have already placed before the House and I do not intend to speak again. I hope the Minister of State, after these final interventions from all of us on this side and with what I know is the goodwill if not the vote of Senator Geraldine Feeney, whom I greatly respect, will find it possible to accept these amendments.

  Minister of State at the Department of Health and Children (Deputy Barry Andrews): I thank all the Senators for their contributions. This Bill is obviously a matter of serious concern to them. One thing which came across strongly from the comments was the strong ethos of care. Some of the phrases used were that it is “a gem”, “an oasis” and that St. Luke’s has provided a wonderful service to people over the years. The challenge for the HSE is to ensure the service is replicated in St. James’s and Beaumont, a challenge which will not be lightly taken. However, it will be taken by the HSE and will be done in conjunction with the Friends of St. Luke’s to ensure that St. Luke’s radiation network will be of the first order and will try to bring the fantastic service that is provided by its staff to the services provided by St. James’s and Beaumont over the next five years.

  Senator Fitzgerald said something which was repeated a number of times, namely, that we all support the national cancer control programme which carries with it consequences. Perhaps when people support the generality of it at the beginning one does not anticipate what it will mean, something we all experience from time to time. If we are serious about the cancer control programme and the recommendations made by clinicians, in other words, that we would have co-located radiotherapy services, medical, oncology and surgical services for better outcomes for patients, and buy into that, it will have uncomfortable consequences which we may not have anticipated at the time.

  They are the recommendations we have had from clinicians. Far from the fear described by Senator Norris that this was some kind of accounting exercise and would save the Exchequer money, the truth is that all the staff are being transferred in a similar manner to the transfer of undertakings, therefore there is no saving. The land cannot be sold or used for any purpose other than the provision of health services and social care services, therefore there is no possibility of realising any savings through the sale of land. In addition, under the national cancer control programme 12 linear accelerators will be available for the provision of radiation oncology in the two new hospitals described in the St. Luke’s radiation network which will begin in late 2010 and early 2011. There will be a 50% expansion in capacity. It is impossible to describe this as an effort to realise money or create savings for the Exchequer. It is clearly informed by clinical advice from 2003. Demographics may have changed since then but we are dealing with an expansion in capacity and retention of the existing staff.

  On Senator Fitzgerald’s reference to Ms Coburn who spoke on radio today and wrote to a number of Senators, on behalf of the Department of Health and Children I wish to offer our sympathies to her and her extended family. It was obviously an extremely unpleasant experience and she had the courage to share it. We all learn from these things. The hospital has apologised to her and her family for the distress which was caused to her. I wish to bring to the attention of Senators that a new oncology assessment unit will open at Galway University Hospital in the middle of August. It should provide direct access for cancer patients and so will provide appropriate, timely treatment for cancer patients who are referred to it by their consultants. It is correct that there are specific protocols for cancer patients who present at accident and emergency departments. What happened to Ms Coburn’s sister was not appropriate and the hospital put its hands up. The consultant Dr. David O’Keeffe referred to thatthis morning on radio when he explained some details of the case.

  Although it is a minor point, the phrase “centres of excellence” is a slight misnomer as they are referred to as “designated cancer centres”. The phrase “centres of excellence” tends to suggest that other centres are not excellent or of the highest standard, and that is not acceptable. We want to ensure the highest standards are in place, and also that designated cancer centres can provide the highest possible level of care. Many Senators have personal experience of St. Luke’s.

  I am not sure if it is any consolation and I am making my comments from a personal point of view, but Crumlin Children’s Hospital is the only paediatric oncology service in the country. Parents never hesitate to bring their children there from all corners of Ireland. It is the only place one can receive the service and one has to go the whole way through the hospital to get to the oncology unit. Everybody talks about it in the warmest possible terms.

  There is always a fear of change. I do not mean to diminish, qualify or classify it as some kind of psychological frailty but this process will be carried out over five years. The Minister was clear that St. Luke’s would not close before 2014 or early 2015 and that remains the case.

  There will be a transition period, as requested by Senator Cummins in his comments. Some Senators were afraid that the hospital would be sold. An amendment was tabled by the Minister in the Dáil and section 6(5) now states that:

  Subject to subsection (6), the Executive shall use the land vested in it by this section for the purposes of the delivery of health and personal social services within the meaning of the

  Health Act 2004.

  The effect of the Labour Party amendment would be to go further than that and restrict it solely to cancer services. The Minister did not want to be overly prescriptive in the use because in certain circumstances palliative care could be provided to patients other than cancer patients.

  It may be a suitable use for the hospital. Nothing can change without the intervention of the Minister. It cannot be used for purposes other than health and personal social services.

&n
bsp; The Fine Gael amendment refers to bringing the issue back to a committee. It is almost like a triple lock, whereby it has to go through the executive, the Government and committee. There is no precedence for that in an operational matter for

  the HSE.

  The amendment introduced by the Minister on Second Stage in the Dáil should address the concerns which were anticipated and encapsulate the amendment tabled by Fine Gael and the Labour Party. I hope I have addressed the majority of Senators’ concerns.

  Senator Healy Eames was correct in regard to quality of care but the outcomes are the crucial issue. She said her father is a difficult man, which I find hard to believe. I am glad he is still hale and hearty after so many years. The Senator can send him my personal best wishes.

  It is important to remember the transition will last five years until 2014 and perhaps 2015. There are considerable safeguards and reassurances. The Minister heeded the concerns raised by Deputies and Senators and it is a tribute to the staff of the hospital that they will be retained in full. We will try to transfer the ethos to the new centres, which will be informed by clinicians and ensure the best outcomes for their patients.

  For the reasons I have stated, I oppose the proposed amendments.

  Senator Frances Fitzgerald (FG): I thank the Minister of State for his response. The Minister, Deputy Harney, recently addressed the Seanad on her vision for the health service. As I told her then, I agree with her vision but have difficulties with the practicalities of its delivery. It is clear from today’s discussion that we support the principle of designated centres but the timing and state of development of these services present problems. This was dramatically illustrated today in the letter from Mrs. Coburn and the comments of other speakers regarding the experiences of patients in these specialist centres. Senator Healy Eames spoke about the pressures that Galway faces at present.

  The Minister of State may be correct to note there is no precedent for our amendment but it offers an important triple lock given what we hear about the designated centres and the delays in developing radiation oncology services. This House would have an opportunity to review and evaluate patients’ experiences in the designated centres compared to their experience in St. Luke’s. The Joint Committee on Health and Children would be able to find out what has actually happened as opposed to the theory of what should happen. The theory on designated centres is excellent but the practice lags far behind. This amendment gives a safeguard by allowing the joint committee to determine whether St. Luke’s strong ethos and positive experience for patients are retained.

  This is why I have proposed amendment No. 1 and the reason we will press it to a vote. I hoped the Minister would, as she originally indicated, accept it. Senator Quinn spoke about listening to patients. The testimony of these patients is striking when it is compared to what we learned about the experience in designated centres. I am disappointed the Government is not accepting the amendment because it would allow us to take the appropriate decisions on the basis of patients’ experiences.

  Senator Phil Prendergast (Lab): I will be pressing amendment No. 2 for the reasons so eloquently set out by all Senators who contributed. In regard to the fundraising abilities of the Friends of St. Luke’s Hospital, as I noted last week, €26 million is an enormous sum. Everyone in this country must have contributed to a collection for St. Luke’s at one time or another. Nobody can be unaware of the services it offers.

  My party’s amendment is reasoned and reasonable. I do not see how it could conflict with the provision of palliative care in St. Luke’s to someone who does not have cancer. If the Minister of State agrees to accept the amendment on the basis of widening its remit to allow for palliative care for such patients, I would be perfectly happy to make the appropriate changes. I will be pressing the amendment to a vote.

  Deputy Barry Andrews (FF): I do not want to ignore the Senators’ comments. Senator Prendergast is concerned about funding. The Friends of St. Luke’s Hospital is a limited company and, as such, a separate legal entity. Senator Feeney also raised concern about the money it raised. The company will continue to determine how the funds it collects through voluntary contributions are distributed and it has stated that it will continue to support St. Luke’s cancer network over the three hospitals. On Thursday, the Minister will meet representatives from the Friends of St. Luke’s Hospital to discuss the transition. The transition until 2014 or early 2015 is a considerable window of time and every opportunity will be afforded to the Joint Committee on Health and Children to examine patients’ experiences during this period.

  The Fine Gael and Labour amendments were then put to the vote. Both were lost by four votes. Senators voted on party lines; the independent senators present supported St Luke’s.

  PRESIDENT’S SIGNATURE FAST TRACKED

  After the defeat in the Seanad on 6 July we were exhausted and very disappointed. Over dinner three days later my husband Tom suggested contacting President McAleese to let her know how 150,000 signatures had been ignored. Joe, Ciaran Corry (whose story appears on p.40) and I worked on the letter. It was sent by email and also by registered post on 10 July:

  Mary McAleese

  President of Ireland

  Aras an Uacharain

  Phoenix Park

  Dublin 8

  July 10 2010

  Dear President McAleese

  Re: Health (Miscellaneous Provisions) Bill 2010 — an appeal

  We write on behalf of the Save St Luke’s Cancer Hospital Campaign to ask you not to sign the Health (Miscellaneous Provisions) Bill 2010 which passed its final stages in the Seanad on July 6th.

  This Bill will be used by the government as a means to close down St Luke’s Hospital, Rathgar as it transfers this fine hospital, and all its assets and lands, to the HSE to do with as they alone see fit. The reasons for asking you to do this are as follows:

  • St Luke’s is an existing centre of excellence for cancer services since 1954, operating independently of the dysfunctional HSE.

  • 150,000 people signed a petition saying that they do not wish St Luke’s to close; 10,000 joined a Facebook campaign for the same reasons and more are continuing to join at a rate of 1,000 per day as we write.

  • The Bill does not take into account patients’ experiences nor they and their families needs and expectations of a cancer ‘centre of excellence’; it is based on clinical-only ‘outcomes’, accountants’ reasoning and experts’ recommendations; it does not take into account the immeasurable and unique ethos and holistic healing approach that St Luke’s delivers.

  • The bill was inappropriately rushed through the Dáil and Seanad before the summer recess, without proper debate, essentially to put in place the mechanics for dismantling the St Luke’s board and hospital when the designated centres for delivery of cancer services are not yet in place to take over these vital services.

  This Bill deals with number of matters but the relevant sections dissolve the Board, transfers the 18 acres site, buildings and assets to the dysfunctional HSE which will oversee the closure of the hospital. Officially the hospital closes in 2014 but it is intended that some staff will be moved later this year.

  The rationale for this is the government’s cancer strategy which is based on a centralised delivery of services concept. In 2005 St James’s Hospital was chosen in a questionable process as the second Dublin centre of cancer excellence which effectively meant the end of St Luke’s in the mind of this government. Six ‘experts’, three of whom were public servants employed by the Minister of Health and three external (to Ireland) experts gave inexplicable low marks to St Luke’s in the process (marks attached — obtained under FOI).

  This makes one question the criteria used and the markers’ ‘expertise’ when patients cannot praise St Luke’s highly enough; see the Facebook ‘Save St Luke’s Cancer Hospital’ page to read personal testimonies of patients and their families’ experiences.

  Patients were not consulted in the process even though the
Minister states closing Luke’s in favour of St James’ is necessary in order to achieve best ‘outcomes’ for patients.

  What are satisfactory ‘outcomes’ and how are they measured? How can measurable clinical outcomes be considered better than immeasurable emotional and spiritual outcomes for patients and their families? Does a better outcome mean being kept alive longer in a high tech hospital rather than dying a few weeks earlier, and happier, in beautiful and tranquil surroundings?

  Healing, as we all know, is much more than just delivery of medical aid and medicines; it also includes mental well-being, therapeutic surroundings and spiritual support. These factors, which St Luke’s has in abundance, also result in satisfactory outcomes.

  Some patients are already saying they will not go to St James’, citing many reasons for this; lack of free parking for family visitors who spend long hours comforting loved ones in hospital; noise and traffic pollution; lack of tranquil, healing gardens and grounds; lack of security within and without the campus; size of hospital complex. The contrast between the tranquil grounds of St Luke’s and the chaotic campus of James’, on which a new private hospital is about to be built, could not be more marked. None of these factors were considered when drawing up this Bill.

  On June 30th 2010, the day the Bill was being discussed, we handed in at the Dáil a 150,000 petition to save the St Luke’s but no reference was made to this by the Minister in her speech in the Dáil that day. She said patients can sometimes be ‘emotional’ as if this justified the lack of consultation and the ignoring of their wishes. Her junior minister, in the Seanad, also referred to a ‘fear of change’ as being part of reason this bill was being resisted; this is an insult to the many cancer sufferers supporting the retention of St Luke’s who are going through the biggest change in their lives since birth and only wish for the retention of this dignified and tranquil facility in which to make that transition.