Evanne Ní Chuilinn (Fine Gael)

I thank the Minister of State for being here to take this matter. Given that she is not based in the Department to which it relates, I really appreciate her being here.

I want to raise awareness of what I and others believe is an undeclared public health issue that needs to be made the subject of a legal and policy framework as a matter of urgency. Every day in Ireland, tens of thousands of people of all ages manage the risks of living with food allergies. The constant threat of accidental exposure shapes their choices about what they eat, where they go and even who they interact with intimately or socially. As people can imagine, children in particular are at huge risk of accidental exposure often simply because these allergies first present at a young age and also because children are usually at the mercy of what is being served to them by an adult, be that in school, on a play date or at a party.

In Ireland, the standard of care provided following a diagnosis of food allergy is generally limited to the strict avoidance of the allergens and a prescription for an auto-injector or an EpiPen to treat a serious reaction.

Before I address a better way forward, let me first point out the gaps in that particular model of care. Children often present with multiple allergies and so could find themselves having to avoid a long list of foods for the rest of their lives. Can the Minister of State imagine trying from now on to avoid, simultaneously, milk, eggs, nuts, kiwi fruit, sesame and raw vegetables? It would be virtually impossible to live a normal life. Now imagine being at school, playing sports, going to college or even dating someone who loves to eat ice cream. It is not sustainable and not fair, yet that is the case for thousands of children and teenagers in Ireland today.

Of course, parents bear the brunt of this frustration, worry and financial pressure. On Tuesday, I met one such parent. Her name is Ruth. She explained how her child minder quit following a near fatal incident involving one of her three children. All three of Ruth's daughters have severe food allergies and so not only did she and her husband give up working intermittently for five years to care for their girls, but they actually prepared food for every child, 20 children, in their daughters' crèche for five years just to make sure their daughters could attend a preschool programme.

Let me move on to the school-going age. There is no overarching policy for emergency medicine to support teachers in schools. The burden of responsibility is put on parents to train teachers and SNAs in the use of their child's EpiPen and also in recognising the onset of a reaction. That is an enormous burden on teachers who are not offered formal training. There is also a policy of no emergency kits in schools. If in a school there are ten children at risk of anaphylaxis due to food allergy, there are probably about 20 EpiPens knocking around the school. All 20 pens are on prescription, all have use-by dates and all have to be replaced at various intervals. The waste alone should by now have triggered a policy and a cross-departmental approach to that policy between the Department of Health and the Department of education. Not only that, but 88% of schools do not have a spare emergency medicine for undiagnosed pupils in their school. Imagine the irony of having 20 or 30 EpiPen in a school and finding that a previously undiagnosed child needs medicine. There is no policy in existence to administer an EpiPen in that instance, leaving the child involved in real danger.

We all remember Emma Sloan from Drimnagh in Dublin who died on O'Connell Street eight years ago after eating a meal containing nuts at a restaurant. She recognised the reaction she had, went to a pharmacy in the city centre but was denied an EpiPen and died. Publicly available emergency medicine kits at schools and public places makes sense. A similar programme has saved 11 lives in the UK since its introduction 18 months ago.

On a more positive note, I have met with a number of advocacy groups, parents and healthcare professionals recently. Even though the risk, danger and worry are what really stand out when we hear their stories, it is important to point out that a life full of limits does not have to be the only way forward. There is a life-changing treatment available. In fact, Ireland is at the forefront in delivering research and development in this area. Oral immunotherapy treatment involves the gradual introduction of increasing doses of an allergenic food to help build tolerance and reduce the severity of allergic reactions, including anaphylaxis. It is not a new treatment. Due to the data on both its safety and effectiveness, it is widely used across the world to treat allergies. Aside from one programme for under-fives in Cork, this treatment is not available in Ireland.

Parents are further adding to their financial strain by travelling to France and other countries to access care over a number of years at great personal cost. Of course, the vast majority of people cannot afford to do that. The treatments can run into tens of thousands of euro because a child needs to go every six months and that is for just one allergen. A child who has more than one allergen needs to go over and back for years and years. Costs include flights and accommodation because they need to stay for about a week each time.

Professor Jonathan Hourihane is a consultant paediatric allergist. He spoke at a briefing here in Leinster House which I hosted on Tuesday alongside a number of parents whose children have allergies. After the parents delivered third testimonials call, he stood up and said, "It is embarrassing to hear my own patients say the care they receive is lousy despite being global leaders in research in allergen and immunology treatment." As well as publicly available EpiPen kits, longer term progress must be advanced in terms of treatments like OIT so that children are not robbed of the joy of childhood and families can live a normal life safe from the ever-present danger of a life-threatening incident.

Will the Minister of State provide an indication for the timeframe to roll out OIT and where the Department stands? I know this matter is not within the Minister of State's remit, but I would be grateful if she could pass on the concerns of tens of thousands of people in Ireland living with these conditions and provide an update on where we are with OIT in Ireland.