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Tuesday, 12 Jul 2022

Written Answers Nos. 956-977

Mental Health Services

Questions (956)

Mark Ward

Question:

956. Deputy Mark Ward asked the Minister for Health the number of inpatient treatment services for people suffering from mental health difficulties that are not registered with the Mental Health Commission by CHO area in tabular form; and if he will make a statement on the matter. [37763/22]

View answer

Written answers

As this is a service matter, I have asked the Health Service Executive to respond directly to the Deputy as soon as possible.

Hospital Appointments Status

Questions (957)

Brendan Smith

Question:

957. Deputy Brendan Smith asked the Minister for Health if the issues raised in correspondence (details supplied) will be given detailed consideration at an early date; and if he will make a statement on the matter. [37771/22]

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Written answers

The Department of Health published the Disability Capacity Review in July 2021. This report set out the capacity requirements for health-funded disability services for the period up to 2032. In order to drive the process of implementing the recommendations of the Capacity Review, a Working Group was set up to develop an Action Plan for Disability Services for the period 2022-2025. This Group, whose membership consisted of senior officials from the Departments of DCEDIY, Social Protection, Housing, Further and Higher Education, Health, and the Health Service Executive, has now completed its work and the draft Action Plan is currently being finalised.

Disability Diagnoses

Questions (958)

Alan Dillon

Question:

958. Deputy Alan Dillon asked the Minister for Health the number of children clinically diagnosed with autism in County Mayo; the established teams in places to provide intervention; and if he will make a statement on the matter. [37772/22]

View answer

Written answers

As this is a service matter, I have asked the Health Service Executive to respond to the Deputy directly, as soon as possible.

Disability Services

Questions (959)

Michael Creed

Question:

959. Deputy Michael Creed asked the Minister for Health when he intends to publish the action plan for the implementation for the disability capacity review; if he will outline the requirement for residential placements identified in the review for HSE-funded disability service providers for each year to 2032; if this analysis will be the basis for funding for the disability sector; and if he will make a statement on the matter. [37775/22]

View answer

Written answers

The Department of Health published the Disability Capacity Review in July 2021. This report set out the capacity requirements for health-funded disability services for the period up to 2032. In order to drive the process of implementing the recommendations of the Capacity Review, a Working Group was set up to develop an Action Plan for Disability Services for the period 2022-2025. This Group, whose membership consisted of senior officials from the Departments of DCEDIY, Social Protection, Housing, Further and Higher Education, Health, and the Health Service Executive, has now completed its work and the draft Action Plan is currently being finalised.

Covid-19 Pandemic

Questions (960)

Dara Calleary

Question:

960. Deputy Dara Calleary asked the Minister for Health if members of the Defence Forces will receive a special recognition payment given their services in support of the HSE during the Covid-19 pandemic; and if he will make a statement on the matter. [34023/22]

View answer

Written answers

Firstly I would like to extend my sincere gratitude to all healthcare workers for their efforts during this most challenging period.

On January 19th, the Government announced a COVID-19 pandemic recognition payment for frontline public sector healthcare workers, to recognise their unique role during the pandemic. Following extensive engagement with healthcare unions on the matter, on 19th April the HSE published eligibility guidelines and FAQs, as apply to the HSE and Section 38 agencies, which are available on its website: www.hse.ie/eng/staff/resources/hr-circulars/hr-circular-012-2022-pandemic-special-recognition-payment.html. Payment is currently receiving priority across all Hospital Groups and Community Services in the HSE.

The HSE and the Department are currently examining progressing the rollout to the list of 6 non-HSE/non-Section 38 organisation types covered by the Government Decision. It is hoped that information will be published shortly for those certain non-HSE/S38 healthcare employees that are covered by the Government Decision and the process available to their employers to implement this measure for their eligible staff. This shall cover eligible staff in:

1. Private Sector Nursing Homes and Hospices (e.g. Private, Voluntary, Section 39 etc.);

2. Eligible staff working on-site in Section 39 long-term residential care facilities for people with disabilities;

3. Agency roles working in the HSE;

4. Health Care Support Assistants (also known as home help/home care/home support) contracted to the HSE;

5. Redeployed members of the Defence Forces to work in frontline Covid-19 exposed environments for the HSE;

6. Paramedics employed by the Department of Local Government, Housing and Heritage.

The above 6 areas only are covered by this Government Decision and all eligible workers will be paid in accordance with the overarching eligibility criteria in place.

Care of the Elderly

Questions (961)

Aindrias Moynihan

Question:

961. Deputy Aindrias Moynihan asked the Minister for Health if her attention has been drawn to the Agency and Ageing in Place in Rural Ireland report produced by University College Cork, UCC, and Age Action; her plans for supporting older people in rural Ireland; and if he will make a statement on the matter. [27789/22]

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Written answers

I welcome the recently published report by University College Cork and Age Action on ‘Agency and Ageing in Place in Rural Ireland’. This important research report explores the experiences and preferences of older adults on ageing in place in rural Ireland and makes a number of recommendations to Government.

Across Government, we will continue to prioritise the needs and preferences of older people, including those living in rural Ireland. The Programme for Government 2020 commits to the vision of creating an Age Friendly Ireland and highlights the imperative to plan judiciously to meet the needs of our ageing population.

The Department of Health’s strategic goal is to support older people to remain living independently in their own homes and communities for as long as possible, in line with the Sláintecare vision for receiving the right care in the right place and at the right time. To this end, €195 million was allocated in Budget 2022 to enable the continued delivery of the Enhanced Community Care Programme.

The objective of the Enhanced Community Care Programme is to reorient healthcare provision towards general practice, primary care, and community-based services, creating end-to-end care pathways that will prevent referrals and admissions to acute hospitals and will enable a “home first” approach.

The Department of Health and the HSE also support a number of complimentary Support-Coordination models which help our older population to age in place and reduce the rate of older people transferring to long-term residential care. The Healthy Age Friendly Homes Programme is an innovative partnership between Age Friendly Ireland and Sláintecare. The programme commenced at the beginning of 2021 and saw the introduction of a new person-centric, robust, support co-ordination service that will enable older people to continue living in their homes with a sense of independence and autonomy.

The HSE, in conjunction with ALONE, is also continuing the roll out of a Support Co-ordination Service that will support older people to live independently at home for as long as possible, by facilitating access to services including befriending, social prescribing, assistive technologies, and by coordinating linkages to local community groups.

The Department of Health is committed to delivering the vision of the 2019 policy statement on 'Housing Options for Our Ageing Population', jointly published with the Department of Housing, Local Government & Heritage. The central aim of the policy statement is to increase the housing options available to older people and to facilitate the integration of supports in a more coherent way, particularly between the housing and health sectors, with a view to facilitating people to live at home with dignity and independence for longer.

The final report of the group, published in June, details the significant progress that has been made to date and the plans for taking the strategic goals of the policy statement onwards. The remaining actions will be taken forward within the framework of Housing for All which aims to increase housing options for older people to facilitate ageing in place, in their own homes and communities, with dignity and independence, and deliver an appropriate range of housing and related support services, in an integrated and sustainable manner. The Department of Health will continue to work with the Department of Housing, Local Government & Heritage, as well as all relevant stakeholders, to increase the housing options available to our older population.

The Government is committed to establishing a new statutory scheme for the financing and regulation of home-support services. It is intended that this new scheme will provide equitable and transparent access to high-quality, regulated home care services based on a person’s assessed care-needs. The Government allocated €150 million of additional funding in 2021 to provide for 5 million more hours of home support. This funding has been maintained into 2022.

To conclude, it is important that there is a cross-governmental and multi-stakeholder approach to address the barriers older people in rural areas face to remain in their homes and communities as they age. The Department of Health is committed to addressing these challenges and supporting older people to age in place in rural Ireland.

Disabilities Assessments

Questions (962)

Niamh Smyth

Question:

962. Deputy Niamh Smyth asked the Minister for Health the waiting times for an assessment of needs in counties Cavan and Monaghan; and if he will make a statement on the matter. [28459/22]

View answer

Written answers

As the Deputy's question relates to a service issue, it has been referred to the HSE for direct reply.

Health Services

Questions (963)

Bríd Smith

Question:

963. Deputy Bríd Smith asked the Minister for Health if his attention has been drawn to the fact that a research report published on 29 June 2022 by family carers Ireland found that 71% of respondents reported they feel left out of society; and if he will make a statement on the matter. [36733/22]

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Written answers

The Government recognises the important role that family carers play in the provision of care in Ireland. Family carers are the backbone of care provision in our country and have cared for the most vulnerable in our society during the COVID 19 pandemic. Whether caring for a child or a parent with a disability or illness or an elderly family member, carers, through their selfless hard work, knowledge and compassion enhance the quality of life of the most vulnerable in our society on a daily basis.

The Programme for Government aims to prioritise policy actions that protect the most vulnerable, including those both in caring roles and those they care for as our economy returns to growth in the aftermath of the pandemic.

The Department of Health is committed to working with other Government Departments to ensure that we are providing the most appropriate supports to sustain carers in their caring role. Officials from the Department of Health recently partook in the Annual Carers Forum hosted by the Department of Social Protection. This annual forum is a forum for family carers and representative organisations to voice their views on caring in Ireland and their priorities to support them in their caring role.

Ireland’s National Carers Strategy is a cross-departmental strategy, designed around a core vision which recognises and respects carers as key care partners who are supported to maintain their own health and well-being, care with confidence and who are empowered to participate as fully as possible in economic and social life.

The National Carers Strategy recommends that family carers should have access to a range of respite services to allow family carers to participate as fully as possible in economic and social life. A break from caring can lessen the psychological and emotional burden that can be experienced by family carers. It can support family carers to continue in their caring role.

Disability Services

Questions (964)

Pearse Doherty

Question:

964. Deputy Pearse Doherty asked the Minister for Health when a person (details supplied) in County Donegal will find out if funding for overnight care will be provided to them in order that they can take up a place at university and if consideration has been taken for the fact that due to the person’s complex needs that they will need this information supplied to them well in advance of the beginning of the semester. [36510/22]

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Written answers

As the Deputy's question relates to a service matter, I am referring the question to the HSE for a direct reply to the Deputy as soon as possible.

Substance Misuse

Questions (965)

Thomas Gould

Question:

965. Deputy Thomas Gould asked the Minister for Health if he will provide an update on the strategic implementation group of the National Drugs Strategy that her Department is chairing. [27668/22]

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Written answers

Strategic implementation groups (SIGs) have been established to support the implementation of the six strategic priorities for 2021-2025 under the national drugs strategy, Reducing Harm Supporting Recovery. These priorities strengthen the health-led approach, reflect commitments in the Programme for Government and align with the EU drugs strategy and action plan 2021-2025.

The new structures reflect the partnership approach and give a stronger voice to civil society by broadening and deepening the involvement of community and voluntary groups in the implementation of the strategy.

Membership of the Groups is comprised of representatives from Government departments and agencies, drug and alcohol taskforces and civil society.

Independent leadership has been provided to ensure the accountability of all stakeholders. These independent chairs will bring impartiality, insight and experience in addressing the challenges of drug and alcohol use. The independent chairs from each Implementation Group, have become members of the National Oversight Committee, and will report to the NOC on the progress made within their respective group. The next meeting of the National Oversight Group is scheduled for September. There are no Government departments acting as chairs for these Strategic Implementation Groups.

I am committed to the partnership approach and a stronger voice to civil society organisations in developing national policy.

Departmental Expenditure

Questions (966)

Thomas Gould

Question:

966. Deputy Thomas Gould asked the Minister for Health if his Department is aware that the HSE has not reported on the details of returned expenditure from its 2021 allocation. [29651/22]

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Written answers

Under Health Act 2004, the HSE reports its expenditure in line with the accounting standards specified by the Minister for Health.

In practice, successive Ministers for Health have directed that the HSE should report its financial performance on an accruals basis, in accordance with Generally Accepted Accounting Principles (GAAP) applicable in the UK and Ireland, specifically Financial reporting standard (FRS) FRS102, with some specific derogations from FRS102 which have been authorised by the Minister and which are disclosed in the HSE’s accounting policies set out in the HSE’s annual financial statements.

In 2021, the HSE reported a Net Operating Deficit of €195m on Current expenditure in its Statement of Revenue Income and Expenditure, and a Net Operating Deficit of €45m on Capital expenditure in its Statement of Capital Income and Expenditure, giving a total overall deficit of €240m in 2021. The applicable legislation requires that the HSE carry forward any deficit in its Income and Expenditure account as a first charge against the following year’s allocation. In cases where the HSE reports a surplus for the year, the HSE may carry this surplus forward only with the consent of the Minister for Health and the Minister for Public Expenditure and Reform;

In relation to reporting obligations, the legislation requires the HSE to adopt annual financial statements on or before the 1st day of April in the year following the financial year to which they relate. These accounts are then required to be audited by the Comptroller and Auditor General and once the finalised audited accounts are available, they are required to be provided to the Minister for Health who lays these before the Oireachtas. This took place on 20th June 2022.

The HSE has therefore has fully complied with its financial reporting obligations as defined under the legislation for 2021 and given the HSE reported a deficit in 2021, consideration of the HSE returning expenditure from its 2021 allocation does not arise. In responding to the Deputy’s question, it has been assumed that the question refers to the HSE’s year-end position. If the Deputy’s question refers to another matter or if additional details are required, my officials will be happy to provide further clarification on request.

Substance Misuse

Questions (967)

Gino Kenny

Question:

967. Deputy Gino Kenny asked the Minister for Health if his attention has been drawn to a recently published report from the Health Research Board, National Drug Treatment Reporting System: 2015-2021 Drug Treatment Data, showing rapidly increasing drug use in Ireland; and if he will consider a different legal approach based on decriminalisation. [35957/22]

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Written answers

The National Drug Treatment Report System (NDTRS), published by the Health Research Board in June of this year, presents trends on treatment for problem drug use (excluding alcohol) for the seven-year period from 2015 to 2021. The data are drawn from the National Drug Treatment Reporting System, the national surveillance system that records and reports on cases of drug and alcohol treatment in Ireland.

The report demonstrates the continuing demand for health services to address the harmful effects of drug use, the types of drugs that are most impactful on people who require treatment, and the social factors associated with problematic drug use.

The increase in treatment services reflects the government’s commitment to a public health response to drug use and the additional resources committed to services in 2021. The total numbers receiving treatment in the community has increased, with 70% of cases now treated in outpatient facilities. The provision of healthcare services in the community is a key tenet of the Sláintecare approach.

The commitment remains to expanding the provision of community-based services in conjunction with drug and alcohol task forces and the HSE. Funding of over €2m has also been made available through the Community Services Enhancement Fund which will have a particular focus on women, ethnic minorities and the LGBTI+ community.

The National Drugs Strategy sets out a health-led approach to drug use. It promotes a more compassionate and humane approach to people who use drugs, with drug use treated first and foremost as a public health issue. The Programme for Government endorses this health-led approach. By treating the use of substances as a public health issue, rather than solely as a criminal issue, we can better help individuals, their families and the communities in which we live.

The Government established a working group to consider alternative approaches to the possession of drugs for personal use in December 2017. The work programme of the group consisted of meetings with experts from other countries, commissioning research on other jurisdictions and undertaking a public consultation. The consultation process received a response of over 20,000 people and included the views of many people who use drugs.

The working group examined the option of decriminalising drugs. The report did not deem this an appropriate option in the Irish context due to legal difficulties (which could lead to the de facto legalisation of drugs), and operational problems for An Garda Síochána. The report of the working group was published in 2019 and is available here.

The Government accepted the views of the working group on the decriminalisation of drugs. Accordingly, there are no plans to decriminalise drugs.

As part of the mid-term review of the national drugs strategy, I announced six strategic priorities for the remaining years of the strategy until 2025. These will strengthen the health-led approach to drug use, as agreed in the Programme for Government, and align with the EU Drugs Strategy and Action Plan. The fifth priority is to reinforce the health-led, rather than criminal justice-led, approach to people who use of drugs and who commit drug-related crimes. The main focus will be on the rollout of the government health diversion programme for people in possession of drugs for personal use, which will offer compassion not punishment. Other initiatives, such as the drug treatment courts, will also be supported. A particular emphasis will be on the exchange of best practice on alternatives to coercive sanctions with EU member states.

Question No. 968 answered with Question No. 181.

Hospital Staff

Questions (969)

Colm Burke

Question:

969. Deputy Colm Burke asked the Minister for Health the action that will be taken by his Department and the HSE in respect of the employment of 20 additional clinical nurse specialists to assist those waiting for a neurology outpatient appointment as advocated by Neurological Alliance of Ireland; and if he will make a statement on the matter. [37796/22]

View answer

Written answers

As this is a service matter, I have asked the Health Service Executive to respond to the Deputy directly, as soon as possible.

Hospital Services

Questions (970)

Colm Burke

Question:

970. Deputy Colm Burke asked the Minister for Health if additional funding will be provided to support eye care services in Cork, particularly to ensure that there is greater capacity for services in Cork to assist those with serious conditions such as glaucoma to have more regular care; and if he will make a statement on the matter. [37797/22]

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Written answers

The HSE Primary Care Eye Services Review Group (PCESRG) Report was launched in June 2017. The Report set out existing levels of service, models of service provision and the consultation process undertaken with patients, advocates, ophthalmic staff and representative bodies.

It also highlighted the limitations of the existing model of service delivery, including the impact on waiting lists, and sets out the way forward for a significant amount of eye services to be delivered in a primary care setting

The Report estimated that 60% of existing outpatient activity could be moved to primary care thus enabling hospital services to focus on patients who require more specialist diagnostics or treatments.

This Report remains current and the HSE has advised that in 2022 it will prioritise the advancing of the transfer of care for children aged 8+ years to local optometrists and supporting the Primary Care Eye Teams in CHOs 6, 7 and 9, with a view to then rolling out this team model to other CHOs.

With regard to Cork in particular, a new ophthalmology suite is being constructed at the Ballincollig Primary Care Centre. This new service will provide a designated specialised infrastructure where all community procedures related to Ophthalmology will be performed and incorporate Multidisciplinary Team Working between multiple grades of ophthalmology staff to deliver the best outcomes for both children and adults. The HSE advise that this Primary Care Centre is due to be operational in Q4 of 2022.

I am fully committed to the development of community services which can facilitate expanded and more integrated provision of eye care in local communities.

Any publicly funded service expansion should address unmet public healthcare needs, improve access to existing public health services or provide better value for money or patient outcomes.

However as this also relates to service provision I have asked the Health Service Executive to respond to the Deputy directly, as soon as possible.

Hospital Appointments Status

Questions (971)

Colm Burke

Question:

971. Deputy Colm Burke asked the Minister for Health if he will confirm that a glaucoma patient (details supplied) will receive an ophthalmology appointment with a specialist in Cork in the near future, as their sight is rapidly deteriorating and that additional funding will be made available for patients in similar circumstances in Cork, that they might receive more regular treatment; and if he will make a statement on the matter. [37798/22]

View answer

Written answers

As this refers to an individual case, I have referred this matter to the HSE for their attention and direct reply to the Deputy.

General Practitioner Services

Questions (972)

David Cullinane

Question:

972. Deputy David Cullinane asked the Minister for Health the number of general practitioner claims made for additional visits under the HSE maternity and infant care scheme in 2020, 2021, and to date in 2022; the number and percentage of claims rejected; the number by code; and if he will make a statement on the matter. [37803/22]

View answer

Written answers

As this is a service matter, I have asked the Health Service Executive to respond to the Deputy directly, as soon as possible.

Dental Services

Questions (973)

Matt Shanahan

Question:

973. Deputy Matt Shanahan asked the Minister for Health if he will address a matter in relation to dental care (details supplied); if he will review contract terms for provision of public dental services in Waterford; the steps being taken to provide dental care to medical card holders in the Waterford city area, some of which are waiting in extreme pain and duress; and if he will make a statement on the matter. [37809/22]

View answer

Written answers

Regarding the specifics referred to by the Deputy, I have asked my officials to contact the Deputy for more information, so that the matter can be referred to the HSE.

Dental care services are provided to medical card holders aged 16 and over by private dental practitioners under contract to the HSE via the Dental Treatment Services Scheme (DTSS). I have been concerned for some time that medical card patients in some parts of the country have been experiencing problems in accessing dental services.

To help address this issue, an additional €10 million in Budget 2022 was secured to provide for expanded dental health care for medical card holders including the reintroduction of Scale and Polish. In addition, an estimated €16 million of an underspend in this year’s estimate allocation (€56 million) is being used to award fee increases across a number of items including fillings.

The combination of these two measures represents an estimated total additional investment of €26 million in the Scheme this year over and above what was spent on the Scheme in 2021, €40 million.

Following consultation with the Irish Dental Association, these new measures came into effect on 1st May. I would hope that this significant additional investment in the Scheme will encourage more dentists to treat medical card patients, including in Waterford.

These measures are designed to address immediate concerns with the DTSS, pending a more substantive reform of the Scheme. It is my intention that this is addressed in the context of the implementation of the National Oral Health Policy, which sets out a body of substantial services reform. Work is underway on a governance framework for this root and branch service reform. The Chief Dental Officer is engaging with stakeholders and I understand that she will meet shortly with the Irish Dental Association.

I have been assured by the HSE that their local services on the ground will assist any persons who are still experiencing problems in accessing a service.

Medicinal Products

Questions (974, 975)

Colm Burke

Question:

974. Deputy Colm Burke asked the Minister for Health if his Department has completed the review of a report (details supplied) in respect of the drug reimbursement process; when this report and the key recommendations are expected to be published; the reason for the continued delay in publishing this report given that Covid-19 is no longer as large a public health risk as it once was; and if he will make a statement on the matter. [37810/22]

View answer

Colm Burke

Question:

975. Deputy Colm Burke asked the Minister for Health the reason that a report (details supplied) submitted to the Minister in January 2020 at a cost of €86,000 has still not been published; if he will commit to prioritising the review and publication of same; and if he will make a statement on the matter. [37811/22]

View answer

Written answers

I propose to take Questions Nos. 974 and 975 together.

Following a tender by the Office of Government Procurement, Mazars conducted a review of the governance structures around the HSE's drug reimbursement process. The report was submitted to my Department in January 2020.

The review made recommendations in respect of the HSE’s systems, structures, processes, governance arrangements and use of specialist resources in respect of the drug reimbursement process.

The report was under consideration by officials, however the focus of the Department of Health changed to the immediate public health considerations of the COVID-19 pandemic and the preservation of life. Consequently, this meant that it was necessary to reallocate resources in order to support essential services.

My Department aims to complete its consideration of the report’s recommendations when resources permit.

Question No. 975 answered with Question No. 974.

Health Strategies

Questions (976, 977, 978, 979, 992, 993)

Colm Burke

Question:

976. Deputy Colm Burke asked the Minister for Health the status of implementation of the key actions outlined in the National Rare Disease Plan 2014-2018; the timeline for the implementation of remaining actions; when a successor plan will be published; and if he will make a statement on the matter. [37812/22]

View answer

Colm Burke

Question:

977. Deputy Colm Burke asked the Minister for Health if his Department intends to follow through on the programme for Government’s clear commitment to publish a successor plan to the National Rare Disease Plan 2014–2018; the reasons for the delay in prioritising all remaining actions; and if he will make a statement on the matter. [37813/22]

View answer

Colm Burke

Question:

978. Deputy Colm Burke asked the Minister for Health the work that has been done to prioritise the remaining actions in the National Rare Disease Plan 2014-2018; the deadlines for implementing these actions; the progress that has been made to date; and if he will make a statement on the matter. [37814/22]

View answer

Colm Burke

Question:

979. Deputy Colm Burke asked the Minister for Health if a new liaison person within his Department has been appointed to oversee implementation of the National Rare Disease Plan; if a review conducted by the former liaison person will be published; and if he will make a statement on the matter. [37815/22]

View answer

Colm Burke

Question:

992. Deputy Colm Burke asked the Minister for Health if a position has been identified within his Department that focuses solely on rare disease policy; if he plans to establish such a position for rare disease policy; and if he will make a statement on the matter. [37832/22]

View answer

Colm Burke

Question:

993. Deputy Colm Burke asked the Minister for Health the status of all programme for Government commitments to ensure an increased focus on rare diseases as outlined in the programme for Government; and if he will make a statement on the matter. [37834/22]

View answer

Written answers

I propose to take Questions Nos. 976, 977, 978, 979, 992 and 993 together.

A disease or disorder is defined as rare in Europe when it affects less than 1 in 2000 people. There are approximately 8,000 known rare diseases; 80% of rare diseases are of genetic origin and are often chronic and life-threatening. Up to 1 person in 12 in Ireland may have a rare disease at some stage in their life. Approximately 300,000 persons in Ireland are living with a rare disease.

Many of the recommendations of the National Rare Disease Plan for Ireland (2014 – 2018) have already been implemented including the establishment of a National Rare Disease Office (NRDO) and HSE National Clinical Programme for Rare Diseases which has now been operationalised and incorporated into the NRDO which is the main contact point and driver for National HSE rare disease projects and initiatives.

The National Rare Disease Plan elaborates on Ireland’s participation in European Reference Networks (ERN). ERNs are virtual networks involving healthcare providers across Europe where the networking of knowledge and expertise through reference centres and teams of experts takes place. These links are emphasized in the Plan to address the care of patients with rare diseases at both National and European levels. Significant progress has been made with regard to participation in ERNs with Ireland’s 15 applications for entry to ERNs recently being approved from 5 academic hospitals. Entry to these networks commenced on 1 January 2022 and represents a significant achievement for the Irish Health Service which will drive innovation, training and clinical research for highly specialised care. It is also a very positive development for individuals and families affected with rare diseases.

In order to ensure that the input and the voice of the patient is represented in the ongoing work in relation to Rare Diseases, in 2021 I met with the HSE, NRDO and the Rare Diseases Task force which comprises the main rare disease advocacy groups; Rare Disease Ireland (RDI), the Medical Research Charities Group (MRCP), and the Irish Platform for Patient Organisations, Science and Industry (IPPPOSI). At this meeting priority areas for the future were discussed with a view to building further on the significant progress made to date in implementing the Rare Disease Plan. A number, of priority areas for the coming period were agreed including; patient awareness, European Reference Networks, research and registries, access to services, access to medicines, diagnosis, education, legislation and policy.

The Clinical Genetics service at Children’s Health Ireland (CHI) at Crumlin was founded in 1995 and provides a diagnostic, counselling and clinical genetic testing service for children and adults affected by or at risk of a genetic condition.

The service is the main provider of general genetic counselling to the population of the Republic of Ireland. It cares for and manages families with genetic conditions, rather than simply focusing on individual patients.

Currently there are four Consultant Geneticists in CHI at Crumlin. I am pleased to advise that two vacant posts have been approved by the Consultant Applications Advisory Committee and have been advertised with a closing date of 22nd of July 2022. A locum post is also currently in place.

To support the progression of Genomics and the development of a national genomics network work a single vision for the future of genomics is required. The Department of Genomic Medicine at CHI is in a central position to build on the foundations of the clinical genomics service in CHI at Crumlin to support clinical teams in understanding and managing disease through precision medicine. CHI are progressing the recruitment of a Genomics Medicine Lead (consultant) across CHI who will link and advise on a national strategy.

I fully support the development of a national strategy for Ireland, and I am pleased to advise that Dr Colm Henry, HSE Chief Clinical Officer, has recently set up an international group to review and advise on the national strategy for genomic medicine. This group will be reporting on its outcomes later this year and I look forward to hearing its progress.’

Question No. 977 answered with Question No. 976.
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