Billy Kelleher (Cork North Central, Fianna Fail)
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The National Centre for Medical Genetics was established in 1994 and is the only publicly funded genetics service in Ireland. There have been two external reviews of the service, most recently an external review undertaken by Professors Donnai and Newman which reported in May 2014 - a report that is still unpublished - which made 19 recommendations. From this the HSE and Crumlin hospital released a plan which had 56 recommendations. Of these 40 were agreed with clinical staff, 11 actions need to be clarified.

Five action points, however, have led to significant disagreement between the clinical staff and the HSE hospital administrators. It was proposed to change of name of centre which was not recommended by any external report. The genetics staff been told that the name-change will cost €10,000 and moneys for it will be deducted from the genetics budget. The other proposals are a review of scope of service, a review of the use of family-based clinical records, no action point for additional full-time locum consultant posts and a proposal to merge genetics labs with the hospital's genetics labs.

Staff are supported by patient groups which maintain the staff are being treated unfairly for highlighting shortcomings in genetic services over the years. There has been a lack of public information on what is happening with no adequate consultation with patient groups and service-users around the current changes and future planning. A steering group to progress the development of a national genetic and genomic medicine network has been established but patient groups were not consulted about the patient representative appointed to the steering group. Nor has the Genetic and Rare Disorders Organisation seen the May 2014 report, despite being part of the process.

Crumlin hospital's chief executive sent a letter to staff in which he stated:

It will no longer be appropriate to refer to the service as the National Centre for Medical Genetics. I appreciate this will represent a difficult change for many but it is necessary if the governance is to be clear and unambiguous.

Senior staff wrote to the Minister for Health, Deputy Varadkar, last November outlining their concerns, especially the proposal to change the status of the centre. They pointed out that 60% of patients seen by the centre are adults and almost half are seen outside Crumlin hospital. There are questions as how these patients will be dealt with when the centre becomes a department of the children's hospital in Crumlin. The change means other genetic centres could be developed in a fragmented way with no integration of family records nationally.

There are also concerns because the genetic service was already a grossly underfunded and understaffed one. As the senior staff told the Minister:

A dismantling of this integrated service runs a huge clinical risk and it incurs unnecessary financial costs as other hospitals will have to resource an independent genetic IT system and genetic charts. This excess workload on an already understaffed unit will also increase risk of clinical errors.

I have been told by someone with knowledge of the situation that it appears that genetics staff, instead of being supported through this change, are in fact feeling under extreme pressure as they fear contravention of best clinical guidelines for their patients and clients. There are also other issues arising as the 2015 HSE service plan did not contain any mention of the national rare disease plan for Ireland 2014-18. Will the Minister indicate what funding will be provided for this plan in 2015?

We are also given to understand that self-referrals will also now not be allowed. This means they will now have to go through a general practitioner, incurring an extra cost for individuals and their families. Relative to UK guidelines, Ireland should have 14 genetic consultants and 47 genetic counsellors. Currently, there are four consultants - one has indicated they may leave as a result of the current situation - and only nine counsellors. Ireland is quite far down the list when it comes to good practice with regards to staffing levels as outlined in the National Centre for Medical Genetics five-year report 2007-11. Will the Minister commit to protecting this service? Will he do it in a way that protects its autonomy, integrity, efficiency and best practice?

Leo Varadkar (Dublin West, Fine Gael)
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I thank the Deputy for raising this issue and for giving me an opportunity to address the House on the matter.

The National Centre for Medical Genetics is the service for medical genetics at Our Lady's Children's Hospital, Crumlin. It provides services for patients and families affected by or are at risk of a genetic disorder. It has three integrated units, namely a genetics service, a cytogenetic laboratory and a molecular genetics laboratory. The University College Dublin department of medical genetics is based in the centre too. Approximately half of the work done in the centre relates to children.

There have been two recent reviews of the service. One was a review commissioned by the HSE, undertaken by Professor Dian Donnai, professor of medical genetics at the University of Manchester, and Professor Bill Newman, professor of translational genomic medicine at the same university.

A separate internal review was also commissioned by Crumlin hospital. Following this internal review, Crumlin hospital made a decision to discontinue the separate identification of the service as the National Centre for Medical Genetics. This was done in the interest of clarity on governance arrangements. It is important we are clear the genetics service is and has always been under the governance of the hospital. It was never a separate entity in its own right. Staff are employees of the hospital and the service has always been accountable to the hospital’s chief executive officer and under the governance of the hospital's board in the same manner as other clinical departments. This change does not affect the service itself and the HSE confirms there has been no reduction in the scope of the service.

The Donnai report, submitted to the HSE in May 2014, made 20 recommendations. The majority of these focused on the internal team working and clinical governance issues. The HSE advises that staff at the centre have accepted these internal recommendations. The report also recommended that a steering group should be established to develop a national genetic and genomic medicine network that reflects best international practice. This group will meet for the first time on 3 March next. Its first focus is to develop a plan for the national network. When complete, the plan will be submitted to the HSE for approval and will be considered in the context of the Estimates process for next year.

Genetics and genomic medicine have developed rapidly over the past five years and continue to do so. We must ensure these services develop in a planned way with best international practice. The work now being embarked on by the steering group is the first step in achieving this.

Billy Kelleher (Cork North Central, Fianna Fail)
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If the reports were published and the recommendations acted upon, at least we would have a start to ensuring that we have a proper genetic service in this country. The important issue is that genetics and genomic medicine have developed rapidly over the last five years and will continue to do so. We need to have a foundation laid as medical science and technologies advance in the whole area of genetics. We need to resource that to ensure there is confidence, particularly in the area of rare diseases, and that patients and service users will have access to the best genetic centre possible. That is something we need to move very quickly on.

There is a feeling among the staff that the concerns of clinicians and staff are not being listened to, that the centre is being ignored and not being adequately resourced, that it is being undermined by the fact that the reports and recommendations have not been acted upon, and that it is being starved of funding. Could the Minister at some stage commit to the genetic centre and to ensuring that it has adequate resources based on international best practice in comparable other countries where they have made far more resources available? That would be a welcome start and would, in some way, give confidence to clinicians and staff that we are serious about funding a genetic centre and about using the advances in medical science and technologies to ensure people can have a better quality of life in this country.

Leo Varadkar (Dublin West, Fine Gael)
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I am no expert in this area and have not been particularly involved with it in any personal way but there are a few points that I would make. I think it is inappropriate for any section or department within a hospital to declare itself a national centre. If there are national centres, they should be designated either by the HSE or the Department of Health, or by some other body. It is inappropriate in general that any department or subsection of any body should declare itself to be a national centre. I hope Deputy Kelleher would agree with me on that.

Regarding the rare diseases plan, it is not specifically mentioned in the 2015 service plan but it is mentioned in one of the operational plans which flows from the service plan. I will be very keen to see the office established this year if that is possible. Of course, that is ultimately a decision for the director general of the HSE.

When it comes to all matters, frankly, I think GP referral is appropriate. If people self-refer to specialists we will have huge numbers of people referring themselves inappropriately, thereby creating waiting lists to see people who do not need to be seen. The whole point of going to a GP first is that the GP operates as a gatekeeper and ensures that only appropriate people are referred to specialist centres. That is the way it works across the public health service and it is a good system in my view.

Clearly, there is a dispute here between some of the staff in Crumlin on the one hand and the CEO and the board of Crumlin on the other. I do not think disputes within a workplace or institution should be resolved in Parliament. That is not our role. It is important that, if there is a dispute in a workplace or hospital, it is resolved using the appropriate mechanisms within that hospital.