Written answers

Tuesday, 18 April 2023

Photo of Emer HigginsEmer Higgins (Dublin Mid West, Fine Gael)
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1332. To ask the Minister for Health the steps his Department is taking to improve the resourcing of genetic services in Ireland for the detection and treatment of rare diseases; and if he will make a statement on the matter. [16081/23]

Photo of Stephen DonnellyStephen Donnelly (Wicklow, Fianna Fail)
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The Government and I are fully committed to improving genetics services in Ireland. One of the key ambitions the National Strategy for Accelerating Genetics and Genomics Medicine in Ireland, launched in December 2022, is to build a strong national genetics service. This will be a patient and family-centred service that can be accessed equitably across the country and across the lifespan of patients. The Strategy outlines a plan to achieve this ambition by improving the evidence-base and infrastructure supporting genetic testing in Ireland. In 2023, the HSE will begin developing a National Testing Directory for genetics and genomics, which will map the current genetic tests conducted across Ireland and provide a more transparent process to referrals. This development, therefore, will be a key steppingstone to improving national genetic testing and ultimately help reduce wait time. The Strategy also outlines a plan to build a strong genetic workforce for the future. This will be achieved by not only recruiting new staff, but training and development for a future workforce, and professional development for current staff within the health service. To start implementing the Strategy in 2023 I approved €2.7 million including the appointment of key staff. These appointments included a National Director for Genetics and Genomics, a Bioinformatics Lab Director, two clinical genetic consultants and six genetic counsellors.

In addition to expanding a broad genetics and genomics service, I have also supported several key measures in rare diseases. My Department has worked with the National Rare Disease Office to facilitate Irish entry into 18 European Reference Networks (ERNs) for rare diseases and support an EU Joint Action for the integration of ERNs into the national system. These ERNs include representation from five academic hospitals and three universities. This represents a significant achievement by the health service, to drive innovation, training and clinical research for highly specialised care. The Department has also progressed Irish entry into Horizon Europe Partnerships on Rare Disease and Personalised Medicine. Participation in ERNs and Horizon Europe Partnerships ensure greater coordination and sharing of best practices in key areas such as genetic testing with European partners. Finally, I have recently announced a plan to develop a revised National Rare Disease Plan. This Plan will be a key step in progressing an improved overall service for individuals living with a rare disease.

Photo of Catherine MurphyCatherine Murphy (Kildare North, Social Democrats)
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1333. To ask the Minister for Health if he will provide an update on the development by the HSE of a well-governed and patient-centred healthcare service for adults and children in the transgender community, in line with the programme for Government commitments in this area. [16083/23]

Photo of Hildegarde NaughtonHildegarde Naughton (Galway West, Fine Gael)
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In 2020, a steering committee was established to address specific issues in relation to the development of transgender healthcare services. The committee had a wide range of stakeholders from the agencies involved in delivering care, as well as service user representatives, including a representative from TENI.

Further to the Cass Interim Report on the Tavistock Clinic, the HSE held an event recently with Dr Hillary Cass, which was attended by a wide range of stakeholders from the HSE, the Department of Health, Children’s Health Ireland, the Ireland East Hospital Group and others involved in providing services.

The HSE is committed to developing a seamless and integrated service for those with gender identity issues on an ongoing basis, with the support of all relevant stakeholders, and are focused on providing a high quality and safe service to an often extremely vulnerable patient group. Throughout this process, the HSE will be consulting with a wide range of stakeholders in the development of the new model of care. Including those who provide and use these services, and advocacy groups.

I am committed to the development by the HSE of a well-governed and patient-centred health care service for adults and children in the transgender community.

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