We will have a longer private session next week to deal with correspondence and other matters. We have apologies from Deputies Clarke, Roche, Sherlock and Burke and Senators Boyle and Byrne.

I remind members of the constitutional requirement that they must by physically present within the confines of the Leinster House complex in order to participate in public meetings. I will not permit a member to participate where he or she is not adhering to this constitutional requirement. Therefore, any member who attempts to participate from outside Parliament will be asked to leave the meeting. In this regard, I ask members participating on MS Teams that prior to making a contribution to the meeting they confirm they are on the grounds of the Leinster House complex.

Today’s meeting will consider access to health services and treatments for allergies. From Allergy Action Ireland, I welcome Ms Catherine Dolan, Ms. Sheila Downes and Ms. Ruth Kidney.

Witnesses are reminded of the long-standing parliamentary practice that they should not criticise or make charges against any person or entity by name or in such a way as to make him, her or it identifiable, or otherwise engage in speech that may be regarded as damaging to the good name of the person or entity. Therefore, if their statements are potentially defamatory in relation to an identifiable person or entity, they will be directed to discontinue their remarks. It is imperative that they comply with any such direction.

Members are reminded of the long-standing parliamentary practice to the effect that they should not comment on, criticise or make charges against a person or an entity outside the Houses or an official either by name or in such a way as to make him, her or it identifiable.

Today’s meeting will deal with allergies. We wanted to shine a light on the issue. It is fair to say the daily impacts of this chronic condition have not received the attention they deserve. There has been very little political focus on the issue until recently but this is slowly changing thanks to advocacy groups like Allergy Action Ireland. For too long, standard care for allergies has amounted to little more than strict avoidance and the prescription of an EpiPen, but more proactive treatments have emerged and Ireland has some serious catching-up to do. Too many people have to travel abroad to access new treatments at huge financial cost and so many others who do not have the means have effectively been left behind. That is not to say we are not seeing some progress. Last year, Cork University Hospital introduced a life-changing food oral immunotherapy programme, which is successfully reducing allergic reactions for patients and significantly easing the day-to-day anxiety of participating families. However, the development of new allergy services is ad hoc without any national strategy or plan guiding it. Today we will discuss this, new treatments for allergies and the daily impact living with a severe food allergy can have.

To commence today's proceedings, I invite Ms Kidney to make her opening remarks on behalf of Allergy Action Ireland.

I thank the committee for giving us this time today. We are deeply grateful. Allergy Action Ireland is a parent-led national voluntary group, formed in 2025 in response to critical gaps in the medical care of children with serious allergies. Before we begin, I ask members to reflect on whether, when they hear about food allergy, it is an inconvenience or a chronic medical condition requiring treatment.

Are allergies perceived as a food safety issue, as repeatedly referenced by the Department of Health, or a complex immune response that rarely exists in isolation of other chronic disorders?

Stigma and misunderstanding about food allergies remain widespread, and families like ours feel forgotten and left out on the margins of the health service. Anaphylaxis is a severe, life-threatening allergic reaction that can be caused by food. It is characterised by a rapid onset, breathing difficulties, swelling, skin rashes, involvement of multiple organs and a dangerous drop in blood pressure. The only effective treatment is immediate adrenaline, followed by urgent medical care.

An estimated 160,000 people in Ireland, or between 1% and 2% of adults and 5% and 6% of children, live with food allergies. However, across Ireland our members have experienced wide disparities in assessments, diagnosis, treatments and follow-up care due to a fragmented and under-resourced allergy service.

It is deeply concerning that despite the seriousness and scale of this condition, Ireland still has no national policy framework, no targets, no awareness campaigns and no model of care for food allergies. There has been no meaningful action from the Government or senior health officials.

Children can wait for over a year for a referral and two to three years for an oral food challenge, with such delays preventing early intervention and increasing the risk of further allergies developing. It is during these early months that children can experience multiple allergic reactions, and their allergic diseases can progress. This leads to the allergic march, as experienced by many of our members' infants.

Families raising children with severe food allergies live with the constant risk that even a tiny amount of an allergen can trigger life-threatening anaphylaxis. Children rarely have just one allergy; many must avoid multiple allergens. Two auto-adrenaline injectors must be carried at all times. Childminders and crèches frequently refuse to take on this responsibility, leaving parents without childcare and forcing many out of the workforce or into reducing working hours. Parents must train every adult involved in their child’s life, from teachers to coaches, to recognise reactions and administer emergency medication. Eating out, holidays and everyday childhood experiences carry significant risk and demand careful planning. This constant hypervigilance, stress, exclusion and responsibility shape every aspect of our lives.

Most of our families have struggled to have their child’s allergy recognised and diagnosed. Many have encountered uninformed responses from GPs, public health nurses and even emergency departments. Parents describe being sent home without guidance or follow-up care. Clinical pathways are inconsistent and access to allergy specialists is extremely limited, leaving families to manage complex medical needs alone and increasing the risk of life-threatening reactions. Older children and adults are left with lifelong avoidance and little to no specialist support after the age of 16. After serious reactions, people with allergies are often told, "You were lucky", "That was a near miss" or "The stars aligned". These are not clinical terms, and luck is not a medical plan. These responses reflect a system with no capacity.

Oral immunotherapy, OIT, a leading treatment for food allergies, is widely used internationally and can reduce the risk of anaphylaxis by around 80%. Despite Ireland being a leader in allergy research, OIT, biologics and sublingual immunotherapy are not funded by the HSE. Families are forced to look abroad for options that should be available in Ireland. They are spending tens of thousands of euro and taking out loans to travel to specialist clinics in France, the UK and the US, and more recently Northern Ireland.

The financial, physical and emotional toll is enormous. There is repeated travel with young children, time away from work and school and the absence of any medical support at home. Professor Adam Fox, a leading consultant at London's Guy's and St. Thomas' Hospitals, has said the service is at full capacity due to Irish patients seeking OIT treatment. The public hospital system in Lille, France, has also said it is not taking on any overseas patients for the foreseeable future due to high demand.

Cork University Hospital recently rolled out a small pilot OIT treatment programme for children aged under five in the Munster region and early data shows that 91% of participants are successfully tolerating small amounts of their allergen. However, they have received no ring-fenced additional funding or resources from the HSE. We are all aware that there are isolated incidents, on an ad hoc basis, of patients being offered OIT in some HSE clinics, while the service remains unavailable to the majority of children in Ireland.

As parents, this is an everyday reality for us. Food allergy is a serious chronic condition affecting thousands of children and adults across Ireland, yet the services needed to meet their medical needs often remain inconsistent or non-existent. Families are doing everything they can, but they cannot continue to carry the burden of delayed diagnosis, passive and often limited specialist care and the absence of modern treatments.

Ireland has the clinical expertise and research leadership. What is missing is a national commitment to act. We urgently need a co-ordinated model of care and improvement in active clinical practice. The health service has a duty of care to deliver evidence-based treatments to actively treat people living with food allergies. I thank the committee.

I thank the witnesses for coming before the committee and laying out their statements on the very difficult situation regarding the paucity of services around allergens. I am a GP and can fully attest to the difficulty in getting specialist assessment for what is a very complex condition. Unfortunately, in the public mind allergies cover a wide spectrum of reactions, from simple allergies to hayfever and seasonal allergies to what the witnesses have described, namely, full-blown anaphylactic reactions to food. Of course, there are people who have full-blown anaphylactic reactions to bee stings and other such things and I am sure the witnesses are aware we are including those groups in this discussion.

I fully understand what was said about trying to get a proper assessment. There is a very good immunology department in the west of Ireland, but it has a long waiting list. There is no triage of the seriousness of some reactions. In addition, I am also aware of patients of mine who spent a lot of money travelling abroad. There used to be a private service in Dublin, but the consultant retired and, therefore, people now go abroad.

I am aware that everything the witnesses have said is quite true. What is their ask from us as a health committee and politicians to advocate on their behalf? What would they see as the ideal model or pathway of care for their children or adults with food allergies?

As part of our statement, there is a submission from the Irish Food Allergy Network which outlines a clinical pathway from the allergists in this country in terms of how allergy services could be improved. That would include, as the Deputy said, triage. We call for a three-point approach. At a community-based primary care level, there would be more awareness among GPs, public health nurses, etc., to be able to recognise the signs and early symptoms of food allergy or related conditions such as eczema, which is something that most of our members have experienced.

Their babies would have had severe eczema, the majority of the time when the food allergy was being developed. It is key that early intervention is widespread because if we can target that eczema in the early stages, in the first few months of life, a food allergy can be prevented from developing. That is at the community level.

If there are more complex cases, it is important they can be referred in a timely manner to access the allergy specialists in Ireland. It may not be possible to deal with those complex cases at the community level. Following this are the treatments that are available internationally. Oral immunotherapy, sublingual immunotherapy and biologics such as Xolair are all treatments for food allergies that can reduce the impact of anaphylaxis and can prevent minor reactions. They can open the door for many of our children to eat a huge range of foods they are currently avoiding because of these restrictions. It is about rolling out these services in Ireland so that Ireland catches up to the rest of the world.

Irish consultants and medical professionals have been involved in the research of these treatments. How are we in a situation where patients do not yet have access and Ireland is leading the research? That is not acceptable at this point. Our kids do not have to live avoiding foods to the level they are avoiding at the moment. There is a solution. We have the documentation in the briefing pack, in section 5. This can happen. By reading through that document and engaging with the clinical specialists in this area, members will realise that it is not especially expensive. A large cohort of allergists would not necessarily be required to roll out these treatments. It is about having more resources generally. More nurses can be educated to assist in oral food challenges and in oral immunotherapy. I stress that the answer is there. The solution is sitting in front of us. It is time for the Government to read that, speak to the individuals who know about it and take action.

Ms Kidney spoke about one of the sentient signs of severe eczema and there are many causes of eczema, as she knows. The difficulty is that if someone has severe and unremitting eczema as a child, there is a two- to three-year waiting list to see a dermatologist. I stress that this is a complex condition. It is sometimes thought that there are allergies and there are people who get anaphylaxis. We know it is much more complex than that. In fairness to the public health nurses or even GPs, it is a complex condition that requires specialist assessment. It would be difficult for this to be done. Certainly after a specialist's assessment, if there is a role for GPs through the-----

I would like to add some data around the waiting lists. Data from 2022 show that the highest proportion of children were waiting 18 months for their first clinical immunology appointment. At the end of 2023, 462 adults were waiting for their first clinical immunology appointment. There were 244 waiting for more than six months.

I also stress that we need structural change here. It is not just short-term change but policy change and legislation that are needed. Allergies have not been discussed in the Oireachtas since 2014, when we had the unfortunate case of Emma Sloan, a child who died on O'Connell Street after ingesting her allergen because she did not have access to emergency medications. This led to changes in legislation but absolutely nothing was done after that in terms of structural change and safeguarding our children.

I stress that it is now about policy change and legislation, and recognising that allergy is a public health issue. Early intervention is key. Without this, the disease takes hold, progresses and leads to a chronic, lifelong condition. We can stop this. There is evidence to suggest that it can be stopped. Our children cannot live with letting a disease progress like this. What other condition would be left without proactive treatment, and instead have only passive skin prick tests that are deemed useless by the allergy community and clinical specialists?

To go back to Deputy Daly's point, while this is a complex allergy and it needs multiple paediatric consultants and varying appointments, at the very basic primary care level in our community, we feel there is something missing. One of the pillars that we have in our document is awareness and education. The GP level, where someone presents with a young child or baby with chronic eczema, is the point at which we can have huge change and stop the atopic, allergic march that can take place. That is where we can potentially prevent allergies from exacerbating.

In our document, many of our members have given testimonials. If the committee members read through those, they will see the evidence. For example, one of our members went for a GP appointment with a young baby with extreme eczema. It took some time to get the appointment, but they were eventually seen almost two years later by a dermatologist. The eczema had exacerbated by that stage. They were not aware of the link between eczema and allergies, so we need that education piece. From the get-go, when a parent comes in with a child with eczema, they should at least be told that the education and awareness piece starts there, going from the GP to the parents. They can at least be mindful of it and ask whether they need to introduce the allergen early, which is the evidence that is now coming through. When my children were younger, it was different - the advice was to avoid nuts. Now, it is introduced from about three months old.

That education and awareness piece is very easily done, with no extra resources needed at the community level. It is about getting that knowledge. In the case of our member, two weeks before that child's second birthday, the child went into anaphylactic shock at home, having eaten a home-cooked meal. The parent called 999. It was the first time they ever realised there was any link between allergies, eczema and inflammation in the body. This was a child unnecessarily going into anaphylactic shock in their own home. They were lucky that they were within reach of an ambulance within 15 minutes. It is unheard of in a lot of rural areas in Ireland that an ambulance would be able to get there in that time. In rural parts of Galway, Clare and Mayo-----

I am from rural Galway, so I know that.

The Deputy is aware how long it might take. Even getting into University Hospital Limerick is difficult because we see a complete backlog of the system there.

While there are complex cases where we need to look at treatments, we have identified three pillars: medical support, standardised care and awareness and education. There is a lot that we can do at the primary level. The Irish Food Allergy Network, IFAN, document that we have in our pack outlines the three steps of primary care, secondary care and tertiary care. At a primary care level, there is a lot that we can already do with regard to education and awareness for parents.

First and foremost, I thank the witnesses for coming here today. As a parent and carer to a disabled young man, I know they probably had to take the day off work and make arrangements for all the other things that happen, so I really appreciate them being here.

I am shocked to hear what they have said this morning. It goes to show that it is such a privilege to be a public representative. I am not directly impacted by this, but I have four kids, and many of their friends have this challenge. We would often have had playdates in the past with EpiPens and all of that. I am shocked that there is no clinical pathway in place, or the very basic pillars that the witnesses are talking about.

I would prevail on my Government colleagues here - no pressure - to link in with the Minister for Health on this. The key thing, as Ms Downes said, is awareness. Having an interest in this general space, I had no idea we were so out of step.

Is there a jurisdiction or a model of practice that Allergy Action Ireland would point to as a good way of doing it? On the allergic march, with disabilities one of the key challenges is that we do not have interventions within the therapeutic window. Deputy Daly and I were in the committee room next door hearing about the wait list. Is there an average therapeutic window in respect of the allergic march or the atopic march?

I will go through one of the treatment options available internationally and where we see we would like Ireland to go. Our cathaoirleach mentioned the pilot scheme in Cork, which was introduced in 2025. It is key that this is a pilot scheme. We have a response to a parliamentary question from the Cathaoirleach, Deputy Rice, on 13 January 2026 on this to the Minister for Health. That was established without any additional funding. It is for a small cohort of allergic children who are under five. It is a great step forward and we were delighted to hear it was established and that many of our members could access it. However, no additional funding was allocated. The consultants and allergists who have been operating that to date have over 311 patients who have attended their oral immunotherapy consultation. It is showing great results with a treatment that is available and is now scientifically proven. Some 67% of their patients have progressed to active OIT treatment and overall they are seeing great results. Personally, I take my children to France every six months for oral immunotherapy treatment. I commenced it at the end of 2023. I have now travelled five times to Lille in France, commencing originally with the public system there and then we moved to the private system. That was just because the allergist we were working with had moved clinics. We felt he really knew our children and we wanted to move with him.

This is the standard of care that has been in France, Canada and the UK for up to 20 years in some cases. Canada is way ahead of us. It was one of the first to introduce oral immunotherapy. It is a given there that everyone - every child and adult - in Canada must have OIT treatment, and it is similar in France. We were told by the consultant there that if we lived in France, it would not be a question. Our child would have this treatment. I have treated both my daughter and my son with oral immunotherapy for multiple allergens at this point, from nuts to sesame seeds. We have had great results. We are now on maintenance. You start initially with an oral food challenge in France. That determines your tolerance level. You come home on a very safe dose, which is a quarter of the level you achieved in France, and then updose safely at home based on a protocol given to you by the consultant, and you are in constant communication with them. You go back after six months and have another oral food challenge to determine where your level has reached. Each child is unique and different. It is not the same for each child; that is just the way it is with these allergies and inflammatory diseases. Then there is a process when you reach the maintenance level. My daughter, for example, was not able to tolerate any peanut. She was anaphylactic to it when she commenced and she now eats two peanuts three times a week safely. That is life changing and life saving for her. That is what this treatment can be for all of our children in this group.

I cannot imagine how terrifying that must be every day. Ms Downes has accessed treatment abroad and I have done something similar. I would say we have spent over €100,000 on physiotherapy in Budapest because there is no physiotherapy here. Are there any supports for the community of parents like the patient treatment fund? In the absence of those therapies here, is there any support or assistance from the HSE?

No. It is not covered under the treatment abroad scheme. It is different from surgeries and those kinds of medical treatments that are covered by that scheme. You do get 20% back from Revenue. It is generally not covered by any of the private medical insurance companies. There is no financial support from the Government to travel abroad. You are on your own with it, really, at a significant cost. It is key to bear in mind, were we to roll it out in Ireland, that it is not a significant cost for the treatment but the cost in terms of travel, flights, accommodation and subsistence. On oral immunotherapy itself, for a day to treat, per allergen, per child is about €850. I appreciate that is a lot of money to most people but in the context of what this can do, you can get one allergen treated in approximately four to five visits. That means it is about €4,000 to bring a child from being anaphylactic through to either being in maintenance and being able to tolerate their allergen, being safe for "may contain", bite-proof, or in France they bring you to free eating. My son has now gone to free eating for peanut and sesame. My daughter is working towards free eating for hazelnut. I never thought that was even possible in this country and now we are working towards that in a different country. None of us wants to do that. None of our members want to move this country and what we know in terms of our medical system to go into another country’s medical system, in a different language. A lot of our members do not want to go on holidays. They do not want to go on a flight because it is so dangerous. We have no other choice. We have to get on a plane where you are confined to a space. Someone might open something. You might have an airborne allergy. There might be residue of hazelnut on the table in a plane. Having to go for medical treatment abroad and put yourself in that position with young children is not something this Government should be forcing us to do, but that is what is happening.

On some of the financial supports, as Ms Downes said we do not qualify for the treatment abroad scheme but we also want treatment in our own country. We do not want to go abroad for this treatment.

I would also say allergies are not covered under the long-term illness scheme like other chronic illnesses. We appear to only be eligible for the drug repayment scheme. Emergency medicines for diabetes and epilepsy are free of charge but we pay for EpiPens. That should be addressed by the Government. There are also associated costs like antihistamines, asthma medication, steroid creams, specialist moisturisers and the list goes on, for eczema as well.

No more than myself, the witnesses are advocating for their community and their kids. I commend them and thank them for that. They pose the question as to whether this is a food safety issue or a complex immune response. If we are leading the research in this area, what is the resistance to putting in place the proper supports and interventions? Do the witnesses get a sense of that?

There is a lot of misunderstanding around allergies. It is widespread. When you talk about food allergies, people might think it was a preference as opposed to a life-threatening reaction.

Is there a kind of stigma attaching to it?

There absolutely is a stigma attached to it. Going back to our pillars, that is why we need this awareness among the general public. It is not only down to food labelling; it is down to the awareness that the tiniest amount of an allergen can cause major allergic reactions. I have seen my own daughter almost die from a very small amount of dairy because her allergy is so severe. This is a message we need people to understand. It is happening and it is possible to change the course of that trajectory. If we get these treatments our kids will not have to live in fear of these allergens that they know can really damage them. It works.

That is a community of trauma as well. Has the association managed to get a meeting with the Minister?

We have not managed to get a meeting yet.

No. We have sent in numerous parliamentary questions because we are trying to piece together bits of information. We are trying to get clarity on things.

We sent a number of parliamentary questions on allergy and when it is going to be prioritised, but we are getting standardised responses.

In Senator Costello and Deputy Daly, Ms Dolan could not find two more passionate advocates for this. It is good that they are here, but it behoves us to contact the Department and the Minister in order to set this on the correct footing. I thank the witnesses so much.

I have a number of questions. Before I ask them, I thank the witnesses for all of their work and advocacy. I know this is not the first time they have been in the Oireachtas. They were here for a briefing in the audiovisual room which I attended and which was really informative.

It is important that we are having this discussion and creating awareness. I commend the witnesses on all of that. It is really important that people understand the impact that having an allergy has. In the witnesses' testimony today and in the evidence they provided, that is set out quite clearly, as is the huge impact it has in the context of the financial costs involved, the lack of services and how draining that is for people in many ways, both emotionally and also financially in having to go abroad. It should not be like that and things should change. I hope this will be the start of that and that we can continue to advocate on that and have things change. In particular, people should not have to be travelling abroad for services that could be provided in Ireland and your local region by the HSE. That is where we need to get to.

I want to tease out the piece around oral immunotherapy. The witnesses referred to the increase in tolerance and then moving to free eating. Could they explain that? Is free eating close to being a cure in layman's terms, or what does that look like?

None of us sitting here are medical professionals. We urge this committee to bring in the national paediatric allergists and specialists in that area to answer some of these questions. From our knowledge, understanding and lived experiences with our children, however, we are aware that there is no such thing really as a cure. If you have a child who is allergic, there are percentages who may grow out by certain stages. In regard to oral immunotherapy, the general approach is that you are going to build up. It is a proven scientific treatment that will build up your tolerance to whatever that allergen might be. Going back, it started with peanut. That was the main one that commenced but we now have oral immunotherapy available for all allergens - sesame, shellfish and all the tree nuts can be treated by oral immunotherapy. This essentially means that you are using small, gradually incremental doses to build up and desensitise the child's immune system to not feel the effect of this protein. It is the protein in the food. The body is unnaturally reacting to that protein. To another child, it is a natural food. You are using just the natural food; it is not that you are using a pharmaceutical product. You are using the peanut or the hazelnut so it is not expensive from that perspective. You go home and do the updosing with the food yourself. You weigh it out and build up desensitisation.

There is one level where you are happy to get to a maintenance phase where you are desensitised. That is different for every child and allergen but it means you could start eating foods that are labelled "may contain" or "made in a factory with nuts" when you are out in a restaurant. You will be able to, say, eat in a restaurant that has allergens listed and it would say "made in a kitchen with nuts or peanuts". It changes your whole life in terms of access to camps and school. It gives you a lot more freedom.

On the second phase, it would be amazing to think that could be achieved where a child could be brought through the whole oral immunotherapy process and they could free eat. That means you could eat what was previously the allergen you were allergic to. It is still not seen as a cure, and it is not that you are fully cured; it is the case that you need to keep that allergen in your diet regularly. When I say regularly, I mean two to three times a week. We have to keep reminding ourselves that even though some children do grow out of their food allergen - all of us here probably have experience with maybe one or two allergens their child has grown out of - the fear is always there. It comes back to what the Senator said about trauma. We all live with significant trauma because we have had a reaction. We know there could be a next reaction so you need to maintain that food in the child's diet regularly or they could become allergic to it again. The body would just revert. I hope I have answered the Chair's question.

In the context of our future engagements, we often like to start by getting the lived reality and hearing from the parents of people who experience it and then inviting the HSE and all the medical experts after we have gathered the relevant information relating to the shortage of services and the day-to-day reality of what is involved. It sounds like there is a significant improvement in quality of life, the freedom to live your life like a normal child and being able to do things like go to camps or school, removing the worry as well.

It is the worry.

Oral immunotherapy is certainly the allergy treatment available, but a lot of what we are trying to get relates to the treatment before you need to have oral immunotherapy and to oral food challenges. During Covid in 2020, Ireland did a mass oral food challenge. All the leading allergists and specialists in Ireland came together and used a vacant facility to do as many oral food challenges on children as they could. To give the committee an idea of the statistics, the oral food challenge will test an allergy. It is the only real way, besides having a reaction, to know that an allergy is real or is a positive allergy. Some 29% of the oral food challenges out of those 474 were positive. Think about that. You have 474 children who are avoiding a particular food and only 29% of them are positive. You have another huge cohort of children who are unnecessarily avoiding a particular food, and sometimes this goes for their entire life. We have adults in our group who were told to avoid nuts that they were told they were allergic to when they were a child and they have never eaten those nuts. They have avoided those products. They have so much trauma and anxiety around avoiding these products and it is unnecessary. If we can start seeing the roll-out of oral immunotherapy as a solution to the complex cases, we can start putting those resources into the early introduction, closing the skin barrier at the primary care level and then doing an oral food challenge to test whether it is a true allergy or doing a false positive skin prick test. Then we have the roll-out of oral immunotherapy to treat those more complex cases.

It is about doing the different parts of it. On oral immunotherapy, it was interesting to see in the replies to parliamentary questions from the Minister that there were 311 patients to date in Cork University Hospital, CUH, with 50% of them travelling from outside Cork. It seems to be that we have this body in Cork but we are not servicing other areas. I know there are regional allergy clinics in Limerick and Clonmel that are operating, but it is a postcode lottery, with a pilot service available in one place but not in another. Have the witnesses heard anything about the new national children's hospital and whether these services will be provided on a national basis there?

We saw in the reply to a parliamentary question that the Minister for Health has allocated four beds for people with allergies. That is all I have heard.

It is important that when we build these national services, build for the future and try to provide some of these new services in our new facilities when we are investing such amounts of money in them.

The witnesses mentioned the cost of EpiPens. Could they tell us a bit more about some of those additional costs they are facing, as well as travelling abroad? Are there other costs that families are facing?

Yes. I suppose we anticipated this question about cost and the cost of food allergies. I could sit here and take this time to tell the committee about the cost and how milk alternatives are three times more expensive, about specialist milk and chocolate, etc. The real cost is the impact on life. The real cost is avoiding foreign holidays and bringing your food on holidays in a suitcase knowing it is safe. The cost to us is avoiding family parties because we cannot provide food and not going to restaurants. The costs are training a child's friend's parent on how to use EpiPens, hoping for the best and the anxiety that comes with that.

There is the children's anxiety as well. My child has had many years of privately funded play therapy to deal with the cost of exclusion. Even when people are doing their best, it is sometimes impossible. You cannot always make pancakes in a classroom for Pancake Tuesday. That is something that just cannot happen around a child who has a milk and egg allergy, for example. That is the cost we are here to talk about. It is the impact on our lives.

It is key to remember that it affects every facet of a child's life, unfortunately. That is really hard to say as a parent of children. If you think of camps and play dates, every facet of Irish life - weddings, funerals and gatherings - revolves of around food in some form. If you take St. Patrick's Day, yesterday, there was green ice cream. A child with a milk allergy cannot have that.

There was the parade and stands with home-baked goods, which is every allergy parent's worst nightmare because your child, with their friend, will ask why they cannot have a bun or buy something in school? There is the school bake day, arts and crafts, perhaps building a bird nesting box with mixed nuts and seeds. They have to be excluded from that, depending on the severity of the allergy, and there can be residue on desks. There is so much exclusion. That cost is very significant.

To add to that, there is the cost of treatment abroad. Ms Downes might talk about this later. It has cost her over €25,000 to get treatment abroad for OIT. That is unattainable for most parents around the country. We want to do right by our children but that cost is extraordinary and unattainable.

Those cost barriers should not be there. People should not have to pay that much money to access services. I echo Senator Clonan's point about engaging with the Minister. It is important that happens and that a national strategy is put together so that all the bits and pieces can be put together. It all needs to sit in an overall strategy.

I thank the witnesses for coming in today. I have certainly learned a lot. I will put my hands up and say I had not realised the full severity of the struggles they face. My idea of allergies was people needing an EpiPen and having nut allergies. I probably had not thought about it too much. A national allergy strategy definitely needs to be looked at as well as education and awareness around allergies, which my colleague outlined through his experience as a GP dealing with allergies and how complex they are. It is not being heartless but when people are not directly impacted by something, they do not really understand the lived experience, so it has been really useful to have the witnesses to come in today. The last time they felt there was a real push was in 2014, and that was due to a young lady passing away. That is a long time ago now. On the Finnish approach, although it is not perfect, they seem to have been doing a lot of good work since 2018 in the field of allergies. I will have a look at what they are doing. Has Allergy Action Ireland been given any reason by the HSE as to why they are not covered by the cross-border scheme?

No, we have not.

There has never been a reason.

Does the Senator mean for accessing treatment outside the country?

Yes.

Part of it may relate to the fact that it is not just a one-off. I do not know the figures but some people will access a surgery - you go, get the surgery and come back, end of. If it is the France or UK scenario, it is every two weeks. Maybe it is because of the multiple trips required. What is key is that we do not want to be travelling abroad for this treatment. Nobody wants to.

I totally get that. That is a question I will take away from this. I will raise it on the witnesses' behalf. Education is important. I did not understand the issue. I recall as a child having hay fever or my mam bringing me for allergy tests to a homoeopathic place. I never really looked at allergies under a medical guise. I had always seen more of an alternative approach to allergies. That is something I have learned today. There are only four paediatric allergists in Ireland as opposed to 100 in Finland. Is that a training or retention issue? What are we lacking in regard to staff, in the witnesses' experience?

That question shows why this session requires a follow-on session with healthcare professionals. It is a question for them as to why and how many they need but the Senator is right; Finland is the gold standard. I have a few stats about Finland. It has a similar population at 5.6 million. There are 100 allergists in that country. The Finnish allergy programme, I believe, was a landmark ten-year society-wide strategy aimed at shifting focus from strict allergen avoidance to building tolerance. That is improving diagnostics and decreasing the societal burden of allergies. It has lowered costs by 30%, reduced hospital days and decreased occupational allergy cases by 45%. That is the all-encompassing approach to allergy care.

It seems from 2018 they have been able to build up data on this. I will have a look at this and do further research. I will speak to Allergy Action Ireland whose representatives are free to contact me. I have learned a lot. I apologise if I did not know a whole lot going in. We all have experience of kids with allergies but to see the severe end where kids are really struggling and having to leave Ireland for therapies, the cost as mentioned is not huge as such. I have a few questions I will take away from this and will do my own research. No doubt I will reach out to the witnesses if I need further information. Does Allergy Action Ireland liaise with representatives from other countries to gain an understanding of how they approach public education and awareness?

We have not to date. It is something we could look at doing. We are connected though our group with various people. A lot of our members go to London and the UK, and a lot of our members are travelling to Belfast where a satellite clinic has been set up. I travel to France myself. My sense is it is just so deep rooted and embedded from primary care level up. It is the holistic approach Ms Kidney alluded to, not just looking at allergies. None of us, if we were not in this space, would understand it. We would think that a seasonal allergy like hay fever is one thing and food allergies are another thing but they are not. In France and in other countries where the treatment is provided, it is a full holistic approach. For example, when I travel to France with the kids, we get the asthma looked at, we get the skin checked, an oral food challenge and oral immunotherapy all in one day in one paediatric allergy ward in a public hospital. That is the gold standard. That is what we want. The French do that from GP level up. If children present with one of those ailments or modalities we talked about, comorbidities, in terms of kids with allergies, the hospital is generally not going to see kids with just the allergy; they will have eczema, asthma, allergic rhinitis - the list goes on. They start from the bottom up in terms of education and it is a given if someone has, for example, a hazelnut allergy in France, they are going to get rid of that allergy. They want you to be able to freely eat it because it is so common their diets there. We can all do a lot more on education. I would hold my hands up. Before my kids were diagnosed, if someone said to me something like a banana allergy, I would have thought that is a preference and they just do not like bananas. We are not in the space but it is far more complex. It is a latex protein in the banana, which can translate into other foods. We know too much unfortunately because we are living it but there is so much that can be done on education.

It is great to have the witnesses in today sharing their information. It is definitely a step in the right direction if it is 2014 since there was any significant engagement. Today is the beginning of more engagement.

I welcome our guests. My question may have been asked. How prepared are our schools for a medical emergency, particularly allergy-related?

My understanding is 70% of our schools are uncertified in autoinjector training. What steps need to be taken to improve the situation for the children of the State?

There is no standard approach in Irish schools. There is no guarantee the first aid training provided to teachers and SNAs includes adrenaline pen administration training; one mother in our group proactively sourced first aid training that included it. We all voluntarily train teachers ourselves. My son has a new teacher every year. It is the usual drill. You go down to the school. You have your EpiPens and dummy EpiPens - testers - and you teach the teacher how to administer emergency medication. I have never actually used an EpiPen; my son, fortunately, has not needed one. I am the one providing training even though I have not used one. That is telling in itself.

I stress there is no allergy policy in schools. It varies between schools as to whether they have the resources to send teachers out for this type of training. It is voluntary. There is no policy around it and it is not standardised. In terms of safeguarding our children, it is up to the school.

It is a worrying situation, to say the least. To try to move this forward, we should write to the Minister for Health and the Minister for education and encourage training for our teachers, and indeed our SNAs because they work closely with children as well. That is hugely important and I hope something positive comes out of it. That is the right direction to take.

If members are happy, we will write to the Minister for Health and the Minister for education. We can include the call around engaging with the witnesses and, potentially, a national strategy and piecing this together.

Can we speak quickly on reactions in schools? Often an allergy is found in the classroom. A child will react in the classroom for the first time, not knowing they have an allergy. Holding emergency medication in schools is something we are keen to support, so we are not relying on the medication of the kids in the class who have allergies. If they are not there, there is no emergency medication in the school.

IFAN has attempted for years to engage with the Department of education on developing a standardised national policy for food-allergic children in schools. In 2019, IFAN was formally told children's health in school is the responsibility of the Department of Health, which then told IFAN to talk to the Department of education. There needs to be accountability and responsibility here. Whose area is this? The Labour Party introduced the Education (Medical Emergencies in Schools) Bill last month. We would welcome its enactment. Whose area is this? Is it Department of education or Department of Health? They throw it back and forth to each other.

All too often we hear of one agency passing the buck to another and back and forth. We need clarity on that.

We should dedicate ourselves to seeing how we can move this forward. I agree with the Cathaoirleach, Deputy Cahill and Senators Costello and Clonan. The committee should write to the Minister for Health, ask if there is a national strategy and get a response in writing.

I do not know - maybe the witnesses can help on this - whether there is a division of allergy specialists in the college of physicians or whether there is an association. I can find that out and inform the Cathaoirleach. We should write to them to come in and outline this. It may not take a full session; it might be half a session but it is something we should do.

The prevalence is 1% to 2%. It is underestimated. It is frightening, even as a doctor, to come across it. I vividly remember almost all the ones in my career. The last one was driven in by car. It was an adult one involving a bee sting. It is a frightening situation for all concerned. It is very dramatic.

We should write to the Minister for education. Giving an Anapen is not rocket science. It is a bit like defibrillators around the country. Everybody hides behind "I couldn't possibly do that." That was the unfortunate case six or seven years ago. A professional person in health felt they could not give an Anapen. We are talking about life-saving stuff here. Nothing is going to happen. Give it. You are going to save someone's life. There is no downside to giving that pen. You will not get it wrong. It is foolproof.

I take the point we should not rely on other children's anaphylactic medication in a school setting when a child has his or her first reaction. I will look at the Finnish model. We silo everything here. If someone comes with asthma to me as a GP, I treat the asthma. There may be obvious allergies or seasonal situations. Some asthmatics are more sensitive to the cold virus so when the infection is over, they are left with inflammation, or to the flu or Covid. We have seen what has happened with Covid and that would be an example.

Kids come with eczema. Even if they get to a dermatology clinic, they are often treated in isolation. The default position, from what I gather from the witnesses, should be to go the root cause of this. This is an allergy and an inflammatory process caused by the body reacting to its environment. Food was mentioned but there are many other things as well.

I am taken with the experience in France. When you go, everything is examined, including eczema and asthma. it is not just simply the allergy. I cannot understand why if we do not have treatment available in this country, we, as European citizens, do not have the right to obtain that treatment in another European Union country. That was my understanding. For the treatment purchase fund, you have to be on a wait list for something and then it has to be approved by the HSE - that is for procedures - but the cross-border treatment-----

The only other response on that was it is not recognised as an approved medical treatment in this country. That was prior to the pilot scheme in Cork. I have not questioned it since then.

That is a cop-out. You could say it is not recognised as a treatment here but in the United States, France or Germany-----

It is proven.

It is internationally recognised.

Those are bigger jurisdictions. It is internationally recognised, I agree.

There are published papers going back many years on its efficacy.

I accept that. I read the witnesses' statement this morning and went into it. It is well recognised. The challenge was always recognised. I do not understand. I think it is goalkeeping. I think it is the system looking after the system. I hate saying that but we get lots of examples of it. People could not obtain the treatment here and had to go to Europe. I do not understand why that cost was not undertaken by the HSE or the Department of Health. It astounds me.

It is one we can put to the HSE when we engage with it in future. Are there any questions or final comments from witnesses?

We all want to express our deep gratitude for this opportunity. We appreciate the members being here after the St. Patrick's Day recess and how engaged they have been on this topic.

We just need to be clear that this is the first step. As the Deputy has said, more engagement is required. We need action from the Department of Health and the HSE. We need accountability and to know who is responsible because, right now, it looks like nobody is responsible for allergies. As the Deputy said, it is imperative that this session is followed by another session with the clinical professionals.

They will outline the-----

They are the ones who have the answers. We can tell the committee about our lived experience but we are not medical professionals. We really do need that as a follow-up.

It is very important to say that they have very much supported us on all of this. They have fed us knowledge and information and would love to see a better roll-out, a national strategy and a more standardised approach. They are key to all of it.

We want to be really clear. A lot of laws around the world have unfortunately been named after a child or young adult who has died. There is Natasha's Law in the UK and Sabrina's Law in Canada. We do not want another unfortunate death to determine real structural change here in Ireland. We can prevent that. We can be proactive. That is something we absolutely do not want to see here.

I thank the witnesses for all of their work, for their engagement and for their time today. We really appreciate it. As I have said, we will engage on this matter again in the future. I will adjourn the meeting until 3.30 p.m. on Tuesday, 24 March, when we will meet in private session. On the following day, 25 March, we will meet with representatives of Children's Health Ireland and the National Paediatric Hospital Development Board to consider issues relating to the completion of the national children's hospital and preparations for bringing it into use.