Billy Kelleher (Cork North Central, Fianna Fail) | Oireachtas source

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an external review undertaken by Professors Donnai and Newman which reported in May 2014 - a report that is still unpublished - which made 19 recommendations.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?

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