Seanad Éireann debate -
Tuesday, 16 Nov 2021

Vol. 280 No. 4

Nithe i dtosach suíonna - Commencement Matters

Hospital Services

Senator Martin Conway

I thank the Cathaoirleach for accepting this very important Commencement matter. As the Minister is no doubt aware, last Sunday, 14 November was World Diabetes Day.

It is a day when people who suffer from diabetes campaign, advocate and reflect on what needs to be done to improve the quality of their lives. Sadly, an increasing number of people in our country are being diagnosed with diabetes. It is a significant and serious health challenge, particularly if it is not treated properly and if the services, supports and structures are not in place to ensure the people who are diagnosed with diabetes can access them. That is the problem in the mid-west, in counties Clare, Limerick and Tipperary, which are serviced by the University Limerick Hospitals Group. The diabetic services and supports available at Limerick hospital are not, unfortunately, up to standard. A good friend of mine suffers from type I diabetes and, as such, I am fully aware of the timeline and what has and has not been delivered in Limerick hospital.

In 2006, the dose adjustment for normal eating, DAFNE, programme, which is now seen as the principal programme that people with type I diabetes should be part of, was rolled out. It is a structure and programme based on providing education around insulin so that people can eat and function normally. In 2006, the programme was rolled out in six areas but, of course, Limerick was not included. As time passed, the DAFNE programme was seen as the key element in terms of education and intervention for people with type I diabetes. In more recent times, the number of DAFNE-supported clinics providing this service throughout the country has increased to 15. It is now considered standard by the HSE and all of the experts who work in the area of diabetes that this should happen. Limerick is still lacking a DAFNE-supported structure even though there are some hospital groups that have more than one. Clearly, there is a problem.

I accept that there is problem around the retention of dieticians, diabetic nurses and endocrinologists. That challenge is faced nationally. The single biggest problem in the mid-west is that while posts are being advertised and, to be fair, the funding is in place, staff have not been recruited. There is still no dietician associated with the diabetic clinic in the University Limerick Hospitals Group. The number of diabetic nurses is far short of what it should be. Although the funding is in place to recruit diabetic nurses, they have not been recruited. As a result of the expertise and specialist professional medical people not being in place in Limerick hospital, the hospital is not in a position to roll out the DAFNE programme.

I want to know what the HSE is doing to resolve this problem in the mid-west. It is not fair that in the people in the region who are suffering from diabetes have to travel to Galway city to have their insulin pumps dealt with and to access the appropriate interventions needed. That is not good enough. It is great for the people for Galway that they have such a fantastic facility. I am delighted for them. The position is similar in Cork and other parts of the country. However, provision is not universal because the people of Limerick do not have a service. This issue has been highlighted annually for the past 20 years, in particular in the years since a very articulate group of people came together in the mid-west to fight the good fight. They were outside the hospital in Limerick protesting on World Diabetes Day to highlight this issue. I am hoping the Minister of State, Deputy Rabbitte, will have some good news for me in terms of dealing with this problem such that, once and for all, people in the mid-west who are suffering from diabetes receive the same service as those suffering in other parts of the country.

Minister of State at the Department of Health (Deputy Anne Rabbitte)

I thank Senator Conway for the opportunity to address the House on this important matter, which I am taking on behalf of the Minister for Health, Deputy Stephen Donnelly.

I assure the Senator that the Government remains fully committed to improving patient-centred care and services across the country. That commitment is seen in the unprecedented level of funding that is being targeted across the health service in budget 2022. This investment will ensure that hospitals can continue to develop the services they provide, including diabetic services in the mid-west.

The University Limerick Hospitals Group, ULHG, has advised the Department of Health that it recognises the need for additional resources within adult diabetic services and is focused on and committed to improving those services. Developing services around insulin pump therapy and structured education requires that further specialist posts be filled, including nurse and dietician posts. While there is a specialist dietician working with paediatric diabetes patients, there is no specialist dietician in post for adults with type 1 diabetes, a matter the Senator referenced. Patients are seen by a ward dietician as inpatients, but there is no specialist dietetic care for outpatient adult appointments.

ULHG sought to address these issues. In December 2020, it received confirmation of funding from the national clinical programme for diabetes to recruit three additional dietetic posts. The recruitment process for two senior dieticians and one staff grade dietician is at an advanced stage. It is prudent for me to point out how long it takes the HSE to recruit staff. It could take up to 50 weeks to recruit for a post, but the ongoing work in this regard is welcome.

A second consultant endocrinologist took up a post on 1 October 2020. Two further consultant endocrinology posts have been approved and are being progressed. There are also three diabetic staff nurse positions within the diabetes unit at University Hospital Limerick, of which two are filled. A recruitment process is ongoing to fill the final post.

In addition to the recruitment for these posts, the adult diabetic service is supported by a dedicated team of clinical nurse specialists and staff nurses. Four diabetic nurse specialist posts have been approved for University Hospital Limerick, of which two will commence over the coming months. A recruitment campaign is ongoing for the remaining two posts.

ULHG has confirmed that the insulin pump programme will be extended when all clinical nurse specialists are in place and fully trained to provide the service. There are two dietetic staff nurse positions within the diabetes unit at University Hospital Limerick, both of which have been filled. The DAFNE course for adults with type 1 diabetes will be dependent on the appointment of these specialist dieticians and the recruitment of the additional clinical nurse specialist.

ULHG advises that the adult service is currently unable to commence patients on insulin pumps due to service demands. The service in Limerick does, however, accept patients established on pumps from elsewhere. These patients are managed under the care of a consultant endocrinologist. The largest group of these patients has been transferred from the paediatric diabetes service at University Hospital Limerick. All insulin pump patients are seen in University Hospital Limerick.

I am assured that ULHG remains committed to the progressive development of diabetic services and that this is a core focus of the group, given its importance to the patients of the mid-west. While recognising that there is still plenty to be done, the recent investment will help ensure that ULHG achieves this goal. I welcome how the HSE has outlined the recruitment process and the funding being put behind the service. I hope that we will see progress in the coming months.

Senator Martin Conway

I thank the Minister of State for updating the House. The DAFNE programme is a critical part of the management of diabetes. Professionals not being in place means that it cannot be provided, and if it is not provided sooner rather than later, the Government will have to consider an alternative approach, that is, making professionals in other diabetic clinics available to Limerick.

There is an inequity. People in Ennis and Limerick who are suffering type 1 diabetes having to go to Galway, Cork or elsewhere is not fair when people in Galway and Cork do not have to travel because their local clinics are able to provide them with supports and services.

While I welcome this, I ask the Minister of State to seek from the University Limerick Hospitals Group an update on whether it has hired the extra professionals required and, if not, what stage the recruitment process has reached and when we can expect the staff to be appointed. If the Minister of State's office makes that response available to me, I will make it available to people in the mid-west who are suffering from type 1 diabetes.

Deputy Anne Rabbitte

I again assure the Senator that the Government and Department of Health remain fully committed to improving services and having patient-centred care in Limerick and throughout the country. This includes diabetic services. It is clear that significant efforts are being made to ensure such services are being progressively developed at the University Limerick Hospitals Group. The group is fully aware of the need for additional resources within its diabetic services. For this reason, it is proactively working to increase specialists and clinical personnel, including three dieticians, two additional endocrinologists and additional diabetic staff nurses.

I will revert to the Senator on his specific question seeking a timeline for filling the posts. I will go further and seek to find out how many staff are in the interview process and how many have been short-listed for the various posts I outlined in my initial response.

Health Services

Senator Aisling Dolan

I welcome the Minister of State to the House. The issue I raise is similar to the matter raised by Senator Conway. November is national diabetes month and Sunday was World Diabetes Day. Many buildings were illuminated in blue, including the University of Limerick. People in all stages of life, from young children to older people, get diabetes. The good news is that we can combat the effects of the disease through insulin and the risks can be reduced, especially with type 2, by making lifestyle changes, which can have a huge impact.

Symptoms include thirst, going to the toilet more and vision changes. The reason I say this is that many people do not know when they are prediabetic or potentially on the route to acquiring type 2 diabetes. They should take a test and go to their GP or pharmacist.

I am a member of the steering group for the cross-party diabetes committee in the Oireachtas with Diabetes Ireland. Recent data from the International Diabetes Federation showed that one person in ten internationally is living with diabetes, which is a life-long condition and one of the top ten leading causes of death globally. These new figures indicate that 537 million adults are living with diabetes, 541 million adults are prediabetic and the prevalence of diabetes worldwide is expected to rise to 784 million.

As Ireland does not have a national diabetes register, we do not have an accurate figure on the numbers affected. We cannot put a finger on it. During the Covid crisis, it was very difficult to identify this cohort of vulnerable people for vaccination. There were steps funded through Sláintecare but Covid came along and priorities had to be made. This is largely an information technology, IT, project. There is a public health crisis and there are many competing priorities, including simply working out how people get intensive care beds.

Professor Seán Dinneen is the clinical lead and consultant endocrinologist in University Hospital Galway, UHG. Excellent group funding has gone into research on endocrinology and diabetes specifically in Galway. We had the research infrastructure to do that and it is one of the areas in which we have become excellent.

In Scotland, which has a register, roughly 5% of the population has diabetes. This suggests that more than 266,000 people in Ireland have diabetes, of whom 234,000 have type 2 and 28,000 type 1. That is in comparison with the Scottish figures but, as I said, we do not have data so this is an estimate.

Professor Dinneen's number one priority, as national clinical lead, is to have a diabetes register. Diabetes Ireland also sought such a register in its pre-budget submission. We need this because we need to track prevalence, measure outcomes and look at the costs of care. That is crucial.

What supports are being offered to eHealth Ireland? There has been major investment in IT. I accept that the cyberattack on the HSE decimated the health service and had an even greater impact than Covid-19. People do not realise its impact.

In what way will eHealth Ireland support the development of a national diabetes register under Sláintecare? How will we ensure that this is an integrated national register within primary care? In other words, GPs on the front line being able to take in information about type 2 diabetes and prediabetes. This is also connected to acute hospital settings.

I am sure it does not fall within the realm of this matter, but I have been calling for an electronic health record for a long time - even in my previous role. Such a record would streamline so many elements of what we want to develop in healthcare and would make everything so much more possible and feasible. It would be a way forward if we could connect primary healthcare with the acute settings through the national diabetes register. What can eHealth Ireland can do on that?

Deputy Anne Rabbitte

I thank the Senator again for raising the topic of diabetes. It is incredibly timely, especially in view of the fact that we celebrated World Diabetes Day last Sunday. I am taking this question on behalf of the Minister, Deputy Stephen Donnelly. Some of the questions the Senator asked reach into other areas of health and I will hopefully get the chance to respond to them when I have read the prepared statement into the record.

Diabetes is a complex condition that has a profound impact on the quality of life of people living with it. If not well managed, it can lead to debilitating complications. The increasing prevalence of diabetes poses a major challenge to our health service, including increasing costs driven primarily by hospitalisation and treating associated complications. Management of the condition is required across the entire spectrum of healthcare delivery. This includes self-management support, care delivered through general practice, community specialist care and hospital inpatient specialist care.

Currently, as the Senator said, Ireland does not have a national diabetes register. As a result, there is no accurate figure for the number of people living with the condition. It is acknowledged that the absence of a register represents a barrier to improving care for individuals living with type 1 and type 2 diabetes here in Ireland. The establishment of a register would help tackle the prevalence of the condition and measure both outcomes and the cost of care and planning for future services. In September 2019, Sláintecare’s integration fund was allocated to the HSE to design and procure a national diabetes register demonstrator product and develop a full specification plan for a such a register. It was intended that the register would be in place by 2021. However, the project was paused because it was dependent on the input of expertise of key HSE staff who wore redeployed to deal with urgent and ongoing Covid-19 work.

The national diabetes register, along with other disease-specific registers, is now being considered as part of a wider review of Ireland’s health information strategy and legislation in light of lessons learned in recent times, along with a substantial increase in Government investment in eHealth. Such registers capitalise on the unique identification of patients and the subsequent data linkage opportunities this enables. When in place, they will operate as virtual registers and will use existing health and social care records to enable monitoring of the incidences and prevalence of the disease in Ireland. The virtual registries will identify people with specific diseases and their data will be extracted from various systems, such as hospital inpatient and outpatient records, laboratory tests and pharmaceutical data collection. Each vital registry will be allowed to require and request the provision of relevant information for health and social care organisations and anyone providing a health or social care service in order to ensure that each registry will have complete coverage of its area of prevalence.

Virtual registries will allow for the development of disease-specific registries in a way that maintains comprehensive and up-to-date information that will meet the needs of many different stakeholders. The development of a national diabetes register will have a long term benefit on the provision of appropriate health services by providing reliable information to healthcare planners and policymakers.

It is important to acknowledge the role played of GPs and how up-to-date their information systems and technology are. It is incumbent on the Department, the policymakers and the HSE to ensure that a receiving ICT network that can match where our GPs are in that regard is put in place. We will not see the overall benefit until everything is pulled together. That is why there is reference to the stakeholders. It is incredibly important. Sometimes, perhaps what is needed is there already but we just need to expand it.

Senator Aisling Dolan

I thank the Minister of State for her response. These delays happened because of Covid-19. The Minister of State talked about different virtual registries. What is the timeline for these? When does the Minister of State think we will see them? Some work was done. We invested in e-health Ireland. As part of our programme for Government and of the budget this year, will there be an allocation specifically for these registries? I mentioned the impact of 28,000 people with type 1. However, a HSE type 2 cycle of care programme was put in place for those with type 2. It estimates 100,000 people were eligible for the 12 months of September 2019. However, this year, only 12,000 have been seen out of that 100,000. The reason we need to be concerned is the related complications such as stroke, kidney disease, eye and foot damage and heart attacks which require hospitalisation. We have invested in e-health Ireland. Does the Minister of State think these registries will be brought forward in the coming six months?

Deputy Anne Rabbitte

It would not be within my gift to put a timeline on it. The Minister, Deputy Donnelly, would have to speak to that piece. The Senator was correct in saying funding has been allocated for the e-budget. However, when there is a slippage in the numbers the Senator mentioned, one would have to ask how that happened and what the long-term costing of care is within that. Is our system not working within general practice or is it not working within the wider sphere of health? That is the first question we have to ask because that sort of leakage is unbelievable and needs immediate addressing. I will bring that matter back to the Minister, Deputy Donnelly.

However, the development of a national diabetes register remains a priority. Following substantial increase in investment in e-health, it is now being considered as part of a wider review of Ireland's health information strategy. The diabetes register, along with other specific registries, will operate as virtual registries and use existing health and social care records to enable the monitoring of the incidence and the prevalence of disease in Ireland. I acknowledge Professor Dinneen's input into this. Sometimes, we do not need to have wider registers, but we need to start with a focus group to see the results of it.

Healthcare Policy

Acting Chairperson (Senator Lynn Boylan)

I remind the speakers to keep to their time.

Senator Garret Ahearn

I will indeed.

I thank the Minister of State for being here and taking this important question on the support the State needs to give to people going through IVF treatment. I brought it up for a couple of reasons. It is very important and we, as a Government, have made a commitment to the people in this State to support them through IVF treatment, just as other EU countries do. The Bill brought forward is called the assisted human reproduction Bill 2017. We are one month away from 2022. Time is not on people's side when it comes to trying to have baby. So many people I have spoken to are going through treatment or are considering going through treatment and they always talk about two elements as part of that process of trying for a child - the emotional and the financial.

The emotional side of things, especially when people find out, is a real roller coaster from the start because they have to absorb the information. They question why it happened them. Cost does not really come into it at that point. It is more about understanding. In fairness to clinics throughout the country, they offer a free counselling service to people when they find out this information, which is welcome. However, many people are just not in the position to be able to talk about it openly.

When one wants to start going down that route of IVF, one needs to do other things beforehand, such as taking tablets that need to be kept in the fridge. Then there is the obvious issue of privacy. When one has guests over and they are going to the fridge to get something, one does not necessarily want them to see tablets one might be taking for something private. There is a constant whirlwind of emotion for a couple going through IVF.

One can then look at the financial side of it which is hugely important. Normally people have a discussion about whether they can afford it, how many times will they do it and whether they are willing to borrow to have a child. I spoke to a person who said they will spend every single euro they had to have a child. That is how much they want it. However, there is a knock-on effect to that. If someone is willing to spend every single penny he or she has to have a child it means if he or she is lucky enough to have that child then he or she is struggling from the start because he or she must repay a massive loan to have a child. When many people have children they discuss whether they are in a position in their lives to be able to afford to have a child. If you are in the situation of going through IVF, your discussion is about whether you can afford to try to have a child, not whether you can afford to have the child afterwards. Thus, from the very start you are in a position of being behind everyone else because you have had to spend so much money to actually be fortunate enough to have a child, and that is if you are lucky.

We as a State need to be able to provide those people with a financial service. Women and couples cannot wait any longer. As I said, time is not on their side. In 2017 the Government made a commitment to support families and couple through IVF. The legislation was supposed to be passed last year. When we talk about legislation we always compare ourselves to other EU countries. There are only two EU countries that have no state support for IVF, and they are Ireland and Lithuania. We only need to look across the Border. In the UK a person can get three treatments of IVF free of charge. It is a failure of us as a Government and as a State that we have citizens of this country who must go abroad to get a service they should be allowed get here. We as a Government support families and children in an awful lot of ways, like maternity and paternity care, but on this we are really letting people down. I am very interested in hearing the Minister of State's response.

Deputy Anne Rabbitte

I thank the Senator for raising this Commencement matter. I am taking it on behalf of the Minister, Deputy Stephen Donnelly. As the Senator will be aware, publication of the assisted human reproduction legislation is a priority for the Department and the Government and a commitment to enact the legislation is included in the programme for Government, Our Shared Future. The Department continues to engage intensively with the Office of the Attorney General in order to finalise this complex legislation. I was really struck by something which the Senator hit on really well, namely, that this is a very emotional issue we are talking about. Sometimes when one is reading out words or articulating something, perhaps you do not understand, unless you have been there yourself, the real complexities and the emotional strain this puts not only on the lady herself but on the relationship, the household and the wider family community who understand where the couple is at.

Another programme for Government commitment is the introduction of the model of care for infertility, which was developed by officials in the Department in conjunction with the HSE's national women and infants health programme. This model of care will ensure infertility issues affecting both men and women will be addressed through the public health system at the lowest level of clinical intervention necessary as part of the full range of services available in obstetrics and gynaecology.

The model of care comprises three stages, starting in primary care with GPs and extending into secondary care, in the form of regional fertility hubs and then, where necessary, tertiary care such as IVF and other AHR treatments, with patients being referred onwards through structured pathways. Phase 1 of the roll-out of the model of care has involved the establishment, at secondary care level, of regional fertility hubs in maternity networks, in order to facilitate the management of a significant proportion of patients presenting with infertility issues without the need to undergo invasive IVF or other advanced AHR treatments. Funding of €2 million was provided to the HSE to commence phase 1 of the roll-out in 2020 and this was utilised specifically in respect of the development of the first four regional fertility hubs, namely, Cork University Maternity Hospital, the Rotunda Hospital, the National Maternity Hospital and the Coombe Women and Infants University Hospital.

Additional funding was made available in budget 2021 to enable the continuation of phase 1 this year, including through the setting up of the final two regional fertility hubs, one located in the Saolta University Health Care Group at University Hospital Galway and one within the University Limerick Hospitals Group at Nenagh General Hospital. Work is well under way on the recruitment, refurbishment and the equipping of these two hubs. Therefore, the completion of phase 1 of the roll-out of the model of care will result in fully operational regional fertility hubs in each of the six hospital groups across the country.

Phase 2 of the roll-out will see the introduction of tertiary infertility services, including IVF in the public health system, but will not commence until such time as infertility services at secondary level have been developed across the country. Required resources have been allocated and the assisted human reproduction, AHR, legislation commenced. Overall, the underlying aim of the policy to provide a model of funding for AHR within the broader AHR regulatory framework is to improve accessibility to AHR treatments while at the same time embedding safe and appropriate clinical practice and ensuring cost effective use of public resources.

I hope that goes some way to answering the Senator's question. It is welcome we have a balance of provision in terms of geography with Nenagh General Hospital and University Hospital Galway included as fertility hubs. We have a more inclusive addressing of this issue.

Senator Garret Ahearn

I thank the Minister of State for her response. I agree with her there are other things we can also do, as time is of the essence in addressing this issue. The quicker somebody finds out that they need treatment, the better. When women get a standard medical, they could get a blood test to assess their ovarian reserve, known as an anti-Müllerian hormone, AMH, test. It costs an extra €80 because it has to go to a different facility to be tested. The State should support that. That would mean a woman could find out much earlier in her 20s that she might have a problem and might not be able to have children in her 30s but could in her 20s and, therefore, would not get that devastating news her 30s. That blood test should be offered free of charge by the State in order that women could find out at an earlier stage if there is a problem, which would give them a longer period of time to decide what they want to do as an individual and as a couple.

I welcome that the National Infertility Support and Information Group, NISIG, will meet the Taoiseach's advisers this week. That shows that the Government is starting to move forward on this issue. This is a greatly emotive issue for many people, many of whom are not willing to talk about it openly, whom we need to support, and I hope we can do that as quickly as possible.

Deputy Anne Rabbitte

It is not possible to give a definite timeline for the completion of the AHR Bill and its subsequent passage through the Houses of the Oireachtas. However, as the Senator said, it is on the priority list for drafting and publication during the current term. I understand intensive work on the Bill is being undertaken by officials to finalise the legislation before the end of this year.

Regarding the current supports for those undertaking the AHR treatment, a defined list of fertility medicines needed for such treatment is covered under the hi-tech arrangement administered by the HSE. I am aware such schemes can have a material impact on the total cost of such treatments for individuals who avail of them.

The Senator's proposal makes perfect and utter sense and in the long term, such an early intervention would probably be a cost efficient method. That is exactly what I will bring back to the Minister, Deputy Stephen Donnelly, in respect of the issue the Senator raised. While we acknowledge work is being done perhaps other earlier interventions should be included when blood samples are being taken because in the long term they would have a cost benefit. Also, most importantly, it would give control back to the individual.

Registration of Births

Senator Victor Boyhan

I welcome the Minister of State to the House. I thank the Cathaoirleach for agreeing to the taking of this Commencement matter today. This issue relates to the proposals for the State's response to illegal birth registrations in Ireland. There are many complexities and issues with respect to children in care but this issue is specifically focused on illegal birth registrations in Ireland. We know a report has been compiled by Professor Conor O'Mahony. It has been sitting on the Minister's desk for approximately six weeks.

I cannot state for certain that the Minister has read the report but I am aware that he has it. What is worrying about it is that many people sitting in their homes today will not be aware of the finer detail regarding illegal birth registrations in Ireland. We know the sad litany of stories relating to children in care. We also know of some of the journeys these children have taken. I do not want to mention individual organisations, some of which facilitated the illegal registration and transfer of children to other families. Often their motives were well-meaning and I do not want to suggest otherwise but at the end of the day, it was not always a happy experience for those children.

I spoke to a family of seven yesterday, all of whom were placed in care in Dublin in one of the major institutions that dealt with children. All of them were adopted but they have never been able to get to the truth. They have been subjected to denial about their history and their past. Two of them now realise that they were born a month apart but have been celebrating birthdays that are supposedly two years apart. The circumstances are tragic. They have been denied their authenticity, their history and the truth about where they belong and their journey. I speak as someone who grew up in care. I know that we all want to know where we came from. We want to know our past and our journey. One of the big issues is that people have been denied that and the Church and the State have been complicit in it.

What does the report that is with the Minister say? Are we going to continue to fabricate, tell lies and send people on a different journey? How can one square this for the seven people to whom I spoke, all of whom are now adults over 50 years of age? They have been denied access to their information. They have been told that they are ungrateful individuals but they have been told so many lies about their identity, their past and where they belong.

I do not want to keep making this case because I am sick and tired of doing so. It is sad when people have to lay bare their own issues in order to convince people. I do not doubt the commitment of the Minister of State but time is up. We have got to tell the people who were illegally adopted. More importantly, they were provided with false documentation, including false baptismal certificates, and a whole range of false information. I want, more than anything, for this report to be published as quickly as possible. I want the necessary counselling and supports to be given to these people.

I will wrap up by saying that we see the world from where we stand and our experiences in it. We bring the good, the bad and the ugly, everything that shapes and moulds us as children, into the future and we cannot forget it. Indeed, we should not forget it and we should not deny it. I do not expect an elaborate response from the Minister of State. I know that she speaks from the heart. That is her style and she has a reputation for it. I do not want her to stand up and read from a sheet of paper, telling me what the Minister has said. I want the Minister of State to take a message back to the Minister from me. The message is, let us get this report published; let us not leave it for another six weeks on the Minister's desk; and let us engage meaningfully and honestly with the people involved.

Deputy Anne Rabbitte

I thank Senator Boyhan for raising this Commencement matter today and I thank the Cathaoirleach for selecting it. The Senator has a direct question that quite rightly, deserves a direct response. The Minister, Deputy O'Gorman, and his officials are actively considering the contents of the report in advance of bringing it to Government and publishing it. The Minister intends to engage with individuals affected by illegal birth registrations on the report in due course. The Minister has the report and is actively working on it. He will bring the report to Government in due course.

Out of courtesy to the Minister, I will read the departmental script into the record.

I thank the Senator for raising this issue, which falls under the policy remit of the Department of Children, Equality, Disability, Integration and Youth. Regrettably, the Minister, Deputy O'Gorman, is unable to attend today, so I am happy to respond to the matter raised on his behalf.

The Minister is conscious of the complexity of issues and emotions that have arisen for individuals because of their illegal birth registration. He is also aware of the many practical issues and questions that have arisen for them. I know he has met with many of the individuals impacted. He listened to their concerns and is committed to bringing about a change that works for them. That is a welcome and refreshing approach from the Minister.

We know that, for some people, it has not been possible to give them access to their birth information without the consent of the parent named on the birth certificate. This is why it is an absolute priority for the Minister and for the Government to bring forward the proposed birth information and tracing legislation. With respect to the report that the Senator refers to, in March 2021, the Minister asked the special rapporteur on child protection to consider the challenges that arise regarding illegal birth registrations and to propose an appropriate course of action. The Minister has now received this report from the special rapporteur entitled, Proposals for a State Response to Illegal Birth Registrations in Ireland.

The Minister and his officials are actively considering the contents of the report in advance of bringing it to the Government and publishing it. In January 2021, the Minister established an interdepartmental group to consider issues arising in regard to the St. Patrick's Guild cases following publication of the Final Report of the Commission of Investigation into Mother and Baby Homes and Certain Related Matters. The purpose of the interdepartmental group was to develop a set of integrated proposals to address the issues arising for those affected by illegal birth registrations, across a range of areas including, in particular, birth registration, identity, parentage and inheritance. These proposals are, in turn, reflected in Part 7 of the general scheme of the Birth Information and Tracing Bill, which was published on 11 May last.

The Minister recently concluded a consultation process with the relevant individuals. The purpose of this consultation was to ensure that the legislative proposals adequately take account of the issues facing them. The consultation was highly productive, with a range of themes emerging from this process helping to inform the drafting of the birth information and tracing legislation. This vitally important draft legislation will, when enacted, provide access to birth certificates and birth information for adoptees, persons whose births were illegally registered and other persons who have questions on their origins. The proposed legislation will also address access to records containing birth and early life information, provide a statutory basis for tracing services, and provide for safeguarding of relevant records.

The general scheme takes account of the specific issues facing people who are the subject of an illegal birth registration regarding their birth registration and identity documents. It also addresses the recognition of parentage in respect of the persons who raised them. I work with the Minister, Deputy O'Gorman, as a colleague in the Department of Children, Equality, Disability, Integration and Youth. He is fully committed to the process. I have never met a person more intent on ensuring that the truth is laid bare and that people have the right to know. That is the Minister's whole purpose.

Senator Victor Boyhan

I thank the Minister of State for her report. I do not doubt the commitment of the Minister, Deputy O'Gorman, to it, but the time is up. It has gone on for too long. There comes a point when people want the information. It is about their identity and contacts. There are many people at a great age now, who will not be around for much longer, and they need support. The more we tell them about new Bills and legislation, the further away it seems. I understand the Minister of State has a job to do. I too have a job to do. I thank the Minister of State for bringing the report to the House today.

Deputy Anne Rabbitte

I will articulate everything the Senator has said here today following his meeting with the seven individuals only yesterday. When in opposition, during the previous Government I spoke ad nauseam on illegal births. We cannot shy away from this. What has happened is wrong and now it is time to tell the truth, lay it bare and give people back their identity.

Acting Chairperson (Senator Lynn Boylan)

I thank the Minister of State for her contribution and for being here today. I also thank Senator Boyhan for his heartfelt contribution.

Sitting suspended at 3.20 p.m. and resumed at 3.30 p.m.