Dáil Éireann Debate, Thursday - 21 September 2023
6. Deputy Thomas Pringle asked the Minister for Health the number of people waiting for genetic testing for each of the years 2018 to 2022 and to date in 2023, disaggregated by waiting times between zero to six months, six to 12 months, 12 to 18 months and 18-plus months, in each hospital, in tabular form; and if he will make a statement on the matter. [39630/23]
View answerI was not expecting to be up this quickly. This question requests the number of people and waiting times for genetic testing for each of the years 2018 to 2022 and if it could be broken down by the length of time they are waiting.
The Government is fully committed to improving genetics services. A key ambition of the national strategy for accelerating genetics and genomic medicine in Ireland is to build an excellent national genetics service. In 2023, the Government allocated €2.7 million to support the first year of implementation of this strategy. This funding supported the creation of a national office and expansion of front-line staff. To improve national genetic testing, we must first build a strong evidence base. To date, genetic testing has been administered at local level. Information is maintained by individual hospital sites and is not disaggregated by age cohort. Therefore, these data are not currently available centrally to support decision-making. It is a priority for the national office to address this challenge. The HSE has begun development of a national genetic testing directory. This directory will provide an accurate picture of current testing. It will also allow for improved national testing capacity in the future. Patients will receive faster, more accurate results without duplication of testing efforts. To inform improvements, the HSE commissioned a study into current national lab capacity. A report examining infrastructure and workforce was submitted to the HSE this week. Findings will be shared with the strategy’s implementation steering group. This will support evidenced-based decisions on genetic testing expansion and service improvements.
That is interesting because I have been trying for some time to get an answer from the Department of Health to this question. I have submitted a number of questions and emails to try to get a response. The day after I submitted this question as a parliamentary question, I got a reply from the HSE, which is different from the reply the Minister for State just gave. It states that it talked to Children's Health Ireland and got figures from the organisation that 1,620 people are waiting for genetic tests. St. James's Hospital cancer genetic testing on 16 August had a waiting list of 3,167. That is different from the response the Minister of State gave today, which is disappointing but it goes back to what Deputy Shortall said; there is something wrong in the Department of Health. This is not the first time this has happened in relation to a question. In July, I put forward a question regarding Cuban doctors and the likelihood of them coming to Ireland. The Minister did not respond. I sent emails to him over a year but he still did not respond. The day before the question came up in the Dáil, a response is issued by the Department. Something is wrong and needs to be addressed. It is very important.
We are way over time.
It is important.
The Deputy will get a chance to come back in.
I also have the figures the Deputy listed in my supplementary response but the question was in relation to the disaggregated figures by age cohort. That is maintained by individual hospitals. It is not disaggregated by age cohort. The data are not currently available centrally to support decision-making. It is a new office. In 2022, funding of €1.34 million was provided for the initial establishment, for example, of the national perinatal genomic service. In December 2022, the national strategy for accelerating genetics and genomic medicine in Ireland was launched. In budget 2023, €2.7 million was allocated to support the implementation of the strategy. The initial investment focused on establishing a national office for genetics and genomics and recruiting front-line staff and roles like the national director for the national office, the national bioinformatics director, a general manager and six genetic counsellors. It is a growing office. I take on board the data the Deputy requested. I hope, in time, we will be able to get the disaggregated data he requested.
The point I was making is that it is the exact same question, word for word. This one was answered on 11 September by the HSE. There is a problem, which must be recognised. The Minister and Minister of State come to the Chamber and read off scripts that are clearly different from the information we can get from other sources. Straight away, there is a problem. The political system needs to address that problem urgently. It does not inspire any confidence in the health services.
I will ask the Minister for Health to come back to Deputy Pringle directly-----
There is no point in that either.
-----on that specific question. I have answered the parliamentary question. The main point is that this is a new office. It has to collate the data so that it is evidence-based. It is an expanding office and will be funded through budgets in order that we can have the data that will directly help patients on the ground, as per the Sláintecare model. It is a growing office that has to be developed.
