Paul Murphy (Dublin South West, Anti-Austerity Alliance)
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32. To ask the Minister for Health his plans to increase the number of genetic counsellors as outlined in the national rare disease plan; and if he will make a statement on the matter. [37770/16]

Simon Harris (Wicklow, Fine Gael)
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A National Rare Disease Plan was published in 2014 and it contains 48 recommendations covering areas such as research, establishment of a national clinical programme and a national office for rare diseases, and the identification of Centres of Expertise. The report did not make a recommendation on increasing the number of genetic counsellors but rather that there is appropriate access to pre-conception genetic testing and counselling and that National Centres of Expertise be identified in accordance with European Union criteria for the care of patients with rare diseases.

One of the principal recommendations in the Plan was the establishment of a National Clinical Programme for Rare Diseases. This programme was to be responsible, over time and among other functions, to assist with developing care pathways for rare diseases and facilitating timely access to centres of expertise.

In line with this recommendation, a National Clinical Programme for Rare Diseases was established in 2013 under the National Clinical Strategy and Programmes Division of the HSE. The programme is a joint initiative between the HSE and the Royal College of Physicians of Ireland. This clinical programme is a channel for assisting with the advancement of a number of other recommendations in the plan, such as those on National Centres of Expertise for rare diseases; and in this vein, the programme designed a framework for the designation of Irish Centres of Expertise in cooperation with HSE Acute Hospitals Division in line with the recommendations stipulated in the national plan.

The National Clinical Programme for Rare Diseases and the Department of Health encouraged designated Centres of Expertise to participate in European Reference Networks (ERNs) for Rare Diseases in line with the national plan. ERNs are European networks connecting health care providers and centres of expertise so that international expertise on specific rare diseases may be pooled together for the benefit of patients. Any centre applying for membership of an ERN must have strategies in place to ensure that care is patient-centred; that patients' rights and preferences are respected; and must show a research component to their work.

Hence, the recommendations in the national plan that relate to empowering and protecting patients and carers, including treatment will be fulfilled in part through this process. It is expected that ERNs will have a major structuring effect by linking thematic expert centres across the EU.

With the encouragement of the National Clinical Programme for Rare Diseases, Acute Hospital Divisions in the HSE and the Department of Health, five centres of expertise were designated in June this year during the first round of calls from the European Commission for participation in European Reference Networks. Three of these designated centres applied for membership of ERNs. It is anticipated that the National Centre for Medical Genetics will have a role in these European Reference Networks in due course.

The establishment of a National Rare Disease Office (NRDO) featured prominently in the recommendations of the Rare Disease plan. The national office was established by the HSE in June 2015. Its work is currently led by the NCPRD Clinical Lead, supported by an Information Scientist, part-time Administrative Officer, part-time Genetic Counsellor and by a 0.2FTE Consultant Geneticist. It is, among other functions, providing up-to-date information regarding new treatment and management options, including clinical trials. In addition, the post of Information Scientist for the office is being funded jointly by the HSE and the EU Commission.