John Paul Phelan (Carlow-Kilkenny, Fine Gael)
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591. To ask the Minister for Health if he has appointed a rare disease liaison within his Department; and if he will make a statement on the matter. [52093/23]

Stephen Donnelly (Wicklow, Fianna Fail)
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The Government is fully committed to doing everything possible to assist people living with a rare disease.

Significant progress has been achieved under the National Rare Disease Plan 2014-2018, including the establishment of the HSE National Clinical Programme for Rare Diseases and a National Rare Disease Office (NRDO).

A Rare Disease Policy unit has been established in my Department who liaise with the National Rare Disease Office in the HSE and relevant stakeholders.

In February I announced a strategy/plan to develop a revised National Rare Disease Plan, in line with the commitment in the Programme for Government. Initial work for the new strategy/plan has commenced, and a Steering Group to progress the new Strategy/Plan is expected to be convened in December.

The voice of patients and families will be central to the development of this policy. A patient liaison officer with a special focus on rare diseases will also be considered within the HSE as part of this new strategy/plan.

The NRDO established a National Rare Disease Information Line which provides current and evidenced based information on rare conditions and signposts to available rare disease expertise in Ireland and Europe.

Patients can also seek information, advice, and support through the Patient Advocacy Service. This free and confidential service, independent of the HSE, provides information and support to people who want to make a complaint about an experience they have had in a HSE public acute hospital through the HSE’s Your Service Your Say process.

Responding effectively to comments, compliments and complaints received and learning from them is key to providing high quality customer focused services. As such, Patient Liaison Officers are located in each Hospital Group and CHO to support service users and staff in the implementation of the complaints management process.

John Paul Phelan (Carlow-Kilkenny, Fine Gael)
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592. To ask the Minister for Health to provide an update on the formulation of an updated national rare disease plan; if the plan will be published within the lifetime of this Government as per the Programme for Government; and if he will make a statement on the matter. [52094/23]

Stephen Donnelly (Wicklow, Fianna Fail)
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I propose to take Questions Nos. 592 and 611 together.

In February, on Rare Diseases Day, I announced a plan to develop a revised National Rare Disease Plan, in line with the commitment in the Programme for Government.

Initial work for the new plan has commenced, and a Steering Group to progress the new plan will be convened in December.

The development of a new Plan will allow us to consider areas of the previous Plan that need to be further progressed, while also looking to the future and the needs of those patients and families living with a rare disease diagnosis.

Regarding the launch and publishing of the New National Rare Diseases Plan, while it is expected to be launched by Q3 2024, it will be dependent on the work of the Steering Group in the development of the Plan.

John Paul Phelan (Carlow-Kilkenny, Fine Gael)
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593. To ask the Minister for Health to publish the number of unimplemented actions from the National Rare Disease Plan 2014-2018; to outline each unimplemented action, in tabular form; and if he will make a statement on the matter. [52095/23]

John Paul Phelan (Carlow-Kilkenny, Fine Gael)
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594. To ask the Minister for Health how his Department in reviewing the unimplemented actions of the National Rare Disease Plan 2014-2018; whether he intends to publish this review; and if he will make a statement on the matter. [52096/23]

Stephen Donnelly (Wicklow, Fianna Fail)
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I propose to take Questions Nos. 593, 594 and 612 together.

An update on the current state of each of the 2014-2018 National Rare Diseases plan’s 48 recommendations has been completed by the Department of Health and provides a moment-in-time update on each of the recommendations. While a number of areas for improvement remain, various actions have been implemented from the 2014-2018 plan and significant resources invested in this area in recent years.

Principal among those actions was the establishment of the National Rare Disease Office (NRDO) in the HSE. The NRDO is the national rare disease ‘coordination hub’ and the HSE main contact and driver of rare disease initiatives and projects. The NRDO is committed to informing, supporting and empowering people affected by rare conditions, their families/caregivers and healthcare professionals.

The HSE National Clinical Programme for Rare Diseases published the HSE ‘Model of Care for Transition from Paediatric to Adult Healthcare Providers in Rare Diseases’ in 2018, and the “Model of Care for Rare Diseases” in 2019. The work of the National Clinical Programme for Rare Diseases has now been mainstreamed into standard operations.

The review of the 2014-2018 Plan will inform the work of the Steering Group to develop the new Plan when it convenes in December. It is expected that the Review will be published as part of the Steering Group meeting documents in due course.