Dáil Éireann Debate, Thursday - 20 April 2023
10. Deputy Ruairí Ó Murchú asked the Minister for Health when it is expected that adequate resources for genetic services in Our Lady's Children's Hospital, Crumlin, will be provided; and if he will make a statement on the matter. [18497/23]
Amharc ar fhreagraWhen is it expected that adequate resources for genetic services in Children's Health Ireland at Crumlin, formerly known as Our Lady's Children's Hospital, Crumlin, will be provided? Those living with rare diseases can sometimes wait over two years for a diagnosis and referral for genetic testing. Sometimes, they can be treated for the wrong condition. These are services that are required, so the sooner they are provided, the better. When exactly will this happen?
I was reviewing the Deputy's question yesterday and was not sure whether he was specifically interested in the new genetics strategy, in the heel prick test, or in some other localised services. I asked the Department to make contact with the Deputy. I do not know if that happened. I apologise if my answer does not exactly reflect where the Deputy wants it to go.
The Minister should cover all of it.
The Deputy might clarify in his response and I will try to be more useful. I will answer about the new genetics and genomics strategy, which will address exactly the issues the Deputy has raised. A number of important developments are under way. I start by acknowledging the premise of the question, which is that Ireland's genetics and genomics services are not where they need to be. We need to expand the heel prick test. Les Martin and others have done significant work on that. We need to expand our capacity for genetic sequencing, personalised medicine, foetal medicine and in various other areas. A number of developments are under way.
Last year, I launched the first national strategy for accelerating genetics and genomics medicine. It aims to build a strong patient and family-centred service. For this year, I approved just under €3 million to implement the strategy. In fact, I was just talking to the chief clinical officer about that this morning. This includes a national office for genetics and genomics, 16 new staff, a national director, a bioinformatics laboratory director, genetics counsellors and genetics consultants. Another important step in improving genetics services is understanding the genetic staffing needs and genetic testing capacity. This will be achieved through the creation of a national testing directory for genetics and genomics. It is subject to live procurement. It will map the current genetic tests conducted across Ireland, allowing for more transparent referrals. I think this will address exactly the point I hope the Deputy is raising.
It is specifically about genetic testing capacity and making this happen sooner rather than later. The Minister is talking about new staff, which is obviously positive. When will they be in place and where will they operate from? Are we talking about Our Lady's Children's Hospital, Crumlin? I imagine we are. We all know, as I say, that 300,000 people are living with a rare disease. At this point in time, they are not being served well. The major issue is that we do not have the capacity to deliver what can be delivered in a comparable health service, where one can generally get that testing done at in and around 12 weeks. When will the Minister have those people in play? Will this deal with the issue? What is the timeline? What will the timeline be for somebody being referred for genetic testing, getting the testing and then diagnosis?
Regarding how many staff have been recruited and the plans to scale up the service, I will ask the Department to revert about its thinking and aims on that. The Deputy asked a question specifically about Crumlin. Children's Health Ireland at Crumlin is a hospital which currently provides genetic tests. The genetics lab conducts cytogenic analysis and molecular genetic analysis. I am aware of a recent campaign to increase the facilities, resources and services for patients at Crumlin. Inevitably, as we move to the new children's hospital, where there is significant additional capacity and space to expand and provide these kinds of services, that will happen. In the meantime, the question for all of us is whether more can be done for patients and families in the intervening period.
That is most certainly what is required. The Minister spoke about the Get Rare Aware campaign. It comes back to the same question about the timeline for these people being in place. Where exactly will they all be based? What will be the capacity for genetic testing? The crux of the matter is when this new plan will be in play, when the people will be in position and what the timelines for testing and diagnosis will be, given that some of these conditions can be very rare. The sooner the intervention can be made, the better. It is obviously vital for those people and their families. Can the Minister give me an answer on that?
I will ask the Department to revert to him on the intended timescales.
