Written answers
Tuesday, 23 January 2024
Department of Health
Health Services
Cathal Crowe (Clare, Fianna Fail)
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592. To ask the Minister for Health if there will be a rare disease clinic at the new National Children’s Hospital. [2492/24]
Cathal Crowe (Clare, Fianna Fail)
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594. To ask the Minister for Health if he will confirm the locations of the centres of excellence identified in the 2016 Rare Disease Plan; and if he will make a statement on the matter. [2494/24]
Stephen Donnelly (Wicklow, Fianna Fail)
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I propose to take Questions Nos. 592 and 594 together.
European Reference Networks (ERNs) of Centres of Expertise (CoEs) are virtual networks involving healthcare providers across Europe established in line with Article 12 of EC Directive 2011/24/EU (Cross-Border Care Directive). They aim to facilitate discussion on complex or rare diseases and conditions that require highly specialised treatment, and concentrated knowledge and resources.
In line with the recommendations from the National Rare Disease Plan (2014-2018), Ireland is currently a member of 18 of the 24 ERNs. These ERNs include representation from five academic hospitals (Children's Health Ireland, Beaumont Hospital, St. Vincent's University Hospital, Mater Misericordiae University Hospital, Tallaght University Hospital) and three universities and is coordinated by the National Rare Diseases Office. This represents a significant achievement by the health service, to drive innovation, training, and clinical research for highly specialised care. Through the European Reference Networks, the National Rare Disease Office (NRDO) is leading out on the development of optimal care pathways across a range of rare diseases.
The first ERNs were launched in 2017, involving more than 900 highly specialised healthcare units from over 300 hospitals in 26 EU countries. Following a call of interest in 2016 Ireland joined 3 ERNs as full members in 2017. A second call was opened in 2018 and invitations for Irish Centres of Expertise to join were sent to all HSE Group CEOs and Clinical Leads. A further 15 Irish consortia composed of at least 40 centres of expertise, led from 5 major academic HSE teaching hospitals, received full ERN approval in December 2021.
With ERNs, patients with rare and complex conditions will be able to benefit from the best treatment and advice available in the EU for their specific condition. Their doctors will have access to a highly specialised pool of colleagues from all over Europe. ERN coordinators convene virtual advisory panels of medical specialists across different disciplines, using a dedicated IT platform, Client Patient Management System (CPMS) and telemedicine tools.
Below is a full list of the ERNs that Ireland currently has membership of:
ERN BOND | European Reference Network on bone disorders |
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ERN CRANIO | European Reference Network on craniofacial anomalies and ear, nose and throat (ENT) disorders |
Endo-ERN | European Reference Network on endocrine conditions |
ERKNet | European Reference Network on kidney diseases |
ERN-RND | European Reference Network on neurological diseases |
ERN LUNG | European Reference Network on respiratory diseases |
ERN Skin | European Reference Network on skin disorders |
ERN EURACAN | European Reference Network on adult cancers (solid tumours) |
ERN EuroBloodNet | European Reference Network on haematological diseases |
ERN EURO-NMD | European Reference Network on neuromuscular diseases |
ERN EYE | European Reference Network on eye diseases |
ERN GUARD-HEART | European Reference Network on diseases of the heart |
ERN ITHACA | European Reference Network on congenital malformations and rare intellectual disability |
MetabERN | European Reference Network on hereditary metabolic disorders |
ERN PaedCan | European Reference Network on paediatric cancer (haemato-oncology) |
ERN RITA | European Reference Network on immunodeficiency, autoinflammatory and autoimmune diseases |
ERN TRANSPLANT-CHILD | European Reference Network on Transplantation in Children |
VASCERN | European Reference Network on Multisystemic Vascular Diseases |
Children’s Health Ireland is a member of 5 ERNs. It is expected that membership of these ERNs will continue under the National Children’s Hospital.
Cathal Crowe (Clare, Fianna Fail)
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593. To ask the Minister for Health if he will clarify why the Midwest is the only CHO without a Model 3 hospital. [2493/24]
Stephen Donnelly (Wicklow, Fianna Fail)
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My Department continues to work closely with the HSE and the University Limerick Hospitals Group (ULHG) in the provision of acute services in the Midwest region. This has included significant and sustained investment in University Hospital Limerick (UHL) and the Model 2 hospitals in this region. There are currently no plans to introduce a Model 3 hospital.
In 2013, the Smaller Hospitals Framework defined the role of smaller hospitals and outlined the need for both smaller and larger hospitals to operate within Hospital Groups. This Framework provided a stronger role for smaller hospitals, like Ennis, Nenagh and St John’s Hospitals, in delivering a higher volume of less complex care in many cases closer to patients’ homes. It also ensures that patients who require true emergency or complex planned care are managed safely in a larger hospital environment.
Within ULHG, there are two Model 2 Hospitals, Ennis and Nenagh Hospitals. St John's Hospital is classified as a Model 2S Hospital, i.e. St. John's can carry out intermediate surgery, which requires in-patient stay and accommodation in addition to day case surgery. These hospitals play a pivotal role in the delivery of high-quality patient care within the region, alongside Croom Orthopaedic Hospital, University Maternity Hospital Limerick and UHL.
There has been significant recent investment into the Model 2 Hospitals in the region to further extend and enhance acute services. This includes investment in the new €2m purpose-built Injury Unit at Ennis Hospital, which opened in 2022. Additional funding of €5.2m was provided in 2023 to extend the Medical Assessment Unit (MAU) opening hours across Nenagh, Ennis and St John's to 12 hours a day, seven days a week.
The Model 2 hospitals accept transfers of appropriate patients from UHL on a daily basis. These patients can either be stepped down from an inpatient ward in UHL or they may, where a clinician has decided it is appropriate, transfer to Ennis, Nenagh or St John's directly from the Emergency Department (ED) in UHL.
In January and February 2023 a 112/999 pathway was introduced for all three MAUs. This allows patients that meet agreed clinical criteria to be transferred by ambulance and treated in a Model 2 hospital. This pathway will result in patients receiving medical treatment in a hospital closer to their home, will reduce patient presentations to EDs, and will release ambulances more quickly to respond to other emergency calls. The MAUs in Ennis and Nenagh Hospitals treat patients referred by GPs, ShannonDoc, and now National Ambulance Service paramedics. 112/999 patients that do not meet these clinical criteria will continue to be transported to EDs for assessment and treatment.
To increase capacity within UHL, there has been significant capital investment, including two separate rapid-build projects, providing 38 additional inpatient beds, in response to the Covid-19 pandemic, and the opening of a new 60-bed modular ward block in 2021. Work commenced on new 96-bed ward block in September 2022. It is anticipated that this much-needed additional bed capacity for the Midwest will become operational in mid-2025. Enabling works have begun on a second 96-bed block.
In addition, planning for a Surgical Hub for Limerick will provide for two new operating theatres and two procedure rooms in a state-of-the-art development on the Scoil Carmel site. This development will improve access and reduce waiting lists within the region.
All of these targeted developments will improve the overall health system in the region.
Cathal Crowe (Clare, Fianna Fail)
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595. To ask the Minister for Health if he will outline the timeline for the implementation of the European Reference Networks standards for ensuring data from all health settings is captured with regard to rare disease, i.e., community healthcare up to hospital settings. [2495/24]
Stephen Donnelly (Wicklow, Fianna Fail)
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As the matter raised is a service delivery matter, I have asked the Health Service Executive to respond to the Deputy directly as soon as possible.
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