Wednesday, 21 November 2018
Saincheisteanna Tráthúla - Topical Issue Debate
Cancer Screening Programmes
The Minister of State will be aware of a case that has come into the public domain in recent days, namely, the tragic case of a woman who developed cancer after she was incorrectly given the all clear by a genetic test at Crumlin hospital. She is calling for a full review of diagnostics at the hospital. She has also asked that a panel of experts in genetic medicine from outside the State be appointed to carry out the review. She has threatened High Court proceedings to seek an injunction against an internal HSE review on this.
The woman was told in 2009 that she did not have the BRCA1 genetic mutation that is linked to breast and ovarian cancer. Her solicitor has said that, tragically, she has developed cancer and is now in a "grave situation". The woman says that the mistaken result denied her the opportunity for intervention and preventative treatment almost a decade ago. Indeed, many people who are correctly identified as having the mutation take preventative measures to avoid developing cancer.
Professor Andrew Green of Crumlin hospital has written to the woman and apologised. That is on the public record. As I am sure the Minister of State knows, Vicky Phelan has said that the situation is eerily similar to her own experience with cervical screening.
Crumlin hospital has declined to comment publicly on the case or to confirm whether there are similar cases, and the Minister, Deputy Harris, has stated that he is prevented legally from commenting. In the absence of such comment, and as the Minister of State will appreciate, there is a great deal of fear and concern, particularly given everything that has happened this year in terms of cancer screening for women.
A report commissioned by the HSE was issued in 2014 by independent experts and made some serious findings. It criticised the standards in the genetics department in Our Lady's Children's Hospital, Crumlin, which was previously known as the national centre for medical genetics. The experts, who were from the University of Manchester, stated that communications among staff were "dysfunctional" and patients did not get timely access to tests. Shockingly, the experts could not find any example of good clinical governance in the genetics department. That is a stark finding for a group of international experts to make. The HSE commissioned the 2014 review after it emerged that hundreds of people at risk of cardiac disease were never informed.
These are serious issues, and now another woman is gravely sick because something was missed. I am not attacking the Minister on this, but he has stated that he cannot comment and Crumlin hospital is not commenting. Worryingly, I understand from communications with the solicitor that the solicitor has tried to get this report but cannot get it. My understanding is that the report is not in the public domain, but I stand to be corrected if it is. I am told that, not only is it not in the public domain, but the HSE, the hospital or whatever relevant authority is refusing to release it. If true, that is quite serious.
Will the Minister of State release the report to the woman and her solicitor? I am told that none of the report's recommendations has been implemented. I am not alleging that, as I do not know it to be true, but it is what I have been told by someone close to the situation. Will the Minister of State release the report immediately? Will he report to the House as a matter of urgency on what progress has been made, if any, in implementing the recommendations of what sounds like a very stark report?
I will be taking this debate on behalf of my colleague, the Minister, Deputy Harris. I thank Deputy Donnelly for raising the issue. The Minister understands that the question is in the context of the recent incident in Our Lady's Children's Hospital, Crumlin - the Deputy has now confirmed this - that has been the subject of a number of media reports. While it is normal practice not to comment on individual cases, I would first like to express my sympathies to the patient and her family on this tragic incident. The HSE has advised the Department that Crumlin hospital is reviewing the incident as a matter of utmost priority.
The 2014 Donnai and Newman report on the review of genetics services in Ireland was commissioned by the HSE to recommend improvements in the governance, management and future development of genetic services. The report made 20 recommendations, the vast majority of which focused on the internal team working and clinical governance issues at Our Lady's Children's Hospital, Crumlin.
The Donnai and Newman report identified 56 actions to be undertaken by the HSE and Crumlin Hospital. The HSE has confirmed that 31 of these actions have already been implemented and a further 16 are currently being implemented. An external multi-professional team led by an experienced NHS health manager from the UK has been assisting the department of clinical genetics to deliver an improved service for patients and clinical service users. Investment is ongoing in the recruitment of extra staff resources and the purchase of new equipment to assist with the implementation of improvements to the service.
While the Donnai and Newman report raised issues with regard to the lack of resources for genetic services at Our Lady’s Hospital Crumlin, it also acknowledged that investment in genetic services in Ireland should be made in the context of developing a contemporary solution for clinical and laboratory genetics and genomics for the country. A key recommendation was that a steering group should be set up to develop a national genetic and genomic medicine network that reflects best international practice. This steering group was established by the HSE in early 2015 under the chairmanship of Professor Owen Smith. The group concluded that future additional investment could only be appropriately provided in line with the establishment of a national genetics and genomics medicine network. To this end, the Smith report recommendations included the appointment of a national director of national genetic and genomic medicine network and a clinical laboratory director. Funding has been allocated in 2018 as part of the HSE's national service plan and these two posts, as well as a business manager post, are currently being progressed for recruitment. On appointment the post holders, in collaboration with all relevant stakeholders, will develop the national strategic direction for genetic and genomic medicine services, including genetic laboratory services.
I have great respect for the Minister of State, Deputy Jim Daly, and my comments are not a personal criticism of him. In deputising for the Minister for Health, Deputy Harris, the Minister of State has been consigned to reading out what is written on a piece of paper. This is topical issues and is meant to be a Dáil debate. The Minister for Health could have emailed me this response. I learned how to read ages ago. It is not fair to the Minister of State. It is certainly not fair to this woman that in parliamentary debate someone deputises for the Minister for Health and does not answer my questions. It is not the Minister of State's fault because the answers are not contained in the prepared response. I am not criticising the Minister of State but this is not satisfactory. The response given is not what Parliament is for; it is what email is for. I am going to ask the questions again. If the Minister of State cannot answer them now, so be it. The questions I am asking are important and relevant and I ask the Minister of State to answer them if he can. If he cannot answer them then I ask that the Minister for Health comes to the House to answer them. That is what this Parliament is meant to be about.
Will the Department instruct the HSE to release the report? It is my understanding that the woman's solicitor has requested a copy of the report on numerous occasions but has not received it yet. If that is true, then the HSE is leaving itself open to allegations of a cover up. It cannot be tolerated. A report was commissioned that made very serious findings, with 56 actions and 20 recommendations identified. I am sure the Minister of State will agree with me that it is not okay for the HSE to hide and to say that recommendations were made, it has implemented a bunch of them and that we should just go away. Will the Minister of State instruct the HSE to release the report? Will he also ask for a much more detailed response from the HSE on the recommendations and actions that have been implemented. We are talking here about life and death and in the context of everything that has happened this year in terms of failures of audit and testing, this is very serious. The Minister of State may not be able to answer me now but I ask him to report back on whether the technology, training and skills within the diagnostics team are the very best available. Has the team had the required capital investment, continuous professional development and so on and does it have everything it needs to do the very best job possible? Finally, I would like to see an audit done of other potential misses. It is my fervent hope that this is a one-off, isolated tragedy but given what we have seen in other areas of the country, I would like to see the HSE or another appropriate body ascertain whether this is a one-off incident. Is there potentially a cluster of misses here and if so, are they due to failures of technology, failures of governance or something else?
In response to the Deputy, I read a prepared script on the issue that the Deputy presented for discussion, namely the 2014 report. I outlined to Deputy Donnelly the number of recommendations that were acted on. He has asked for clarity on the recommendations that have been implemented and I will request that clarity from the HSE which is the organisation that is delivering the service and responsible for it. I will also pass on his request to the Minister for Health, Deputy Harris, that the report be published and will ask the Minister to respond to the Deputy directly on that matter. It is not for me to instruct the HSE but I will certainly ask the Minister for Health to do so on behalf of Deputy Donnelly. I will also pass on to the HSE the Deputy's request that a detailed audit be conducted. I will ask the HSE to provide clarity on that. Deputy Donnelly is referring to a recent case about which I do not want to comment but I have been assured that it is an isolated case. That is our understanding but an investigation is ongoing, the result of which will be available in a couple of days.