Martin Daly: Calls for Structural Change to Allergy Care

Thanks very very much for coming in and to the to the committee and laying out your statement and the very difficult situation the paucity of services around allergens. I'm a GP myself and it is I can fully attest to the difficulty in getting specialist assessment for what is a very complex condition and unfortunately allergies in the public's mind cover a wide spectrum of reactions from simple allergies to hay fever and seasonal allergies to what you're describing which is full-blown anaphylactic reactions to food and of course there are people who have full-blown anaphylactic reactions to bee stings and others so I'm sure you include that group in this in you'd be aware that we're talking about that in terms of and I also have to say I fully understand what you're saying about trying to get proper assessment. We have long wait lists and in the west of Ireland there's a very good immunology department there but there's a long wait list and there isn't a triaging of the seriousness of some of these reactions. In addition to that I'm also aware of patients of mine who spent a lot of money to go abroad there used to be a service privately in Dublin that was lost the consultant retired and people are going abroad now so I'm aware of all I think everything you've said is is quite true and what would your ask be from us as a as a health committee and as politicians to do on your behalf to advocate on your behalf what would you see as the ideal model of care or pathway of care for your children or adults with food allergies? As part of our submission we have a submission from the Irish Food Allergy Network which outlines a clinical pathway by the allergists in this country of how allergy services could be improved and that would that would that would that would include a as you say a triage it's three a three point approach where at a community-based primary care level there's more awareness among GPs public health nurses etc to be able to recognize the signs and symptoms early symptoms of food allergy or related conditions such as eczema which is something that most of our members would have experienced their babies would have had severe eczema the majority of the time when when during food or when the food allergy is being developed so it is key that early intervention is something that's that's that's widespread it's known widespread because if you can essentially target that eczema in the early stages in the first few months of life then you can you can prevent a food allergy from developing so it's that at the community level and then once if there is more complex cases that they can be referred in a timely manner to be able to access the allergy specialists in in Ireland because those complex cases may not it may not be possible to deal with them at that community level and following this it's the treatments that are available internationally oral immunotherapy sublinual immunotherapy biologics such as zola these are all treatments for food allergies that can reduce the impact of anaphylaxis and can prevent minor reactions can open the door for many of our children to eat a huge amount of food that they're currently avoiding because of these restrictions so it's to roll out these services in Ireland and for to get Ireland to catch up to the rest of the world and the Irish consultants and medical professionals have have have been involved in the research of these treatments and how are we sitting here in a situation that we don't have access the patients don't have access yet Ireland's leading the research so it's just not acceptable at this point our kids do not have to live avoiding foods to the level they're avoiding at the moment there's a solution you have the documentation in your in the briefing pack here in section five um this can happen and if you if you read through that document and engage with the clinical specialists in this area you'll realize also that it it isn't it isn't that expensive essentially you're not talking about a massive cohort of allergists um necessarily required to to to throw like this treatments it's um more resources generally more nurses can be can be um educated to actually to to um to assist in oral food challenges and in oral immunotherapy so i i i stress um the answer is there the solution the solution is actually sitting in front of you so it's it's time for the government now to read that to speak to the individuals who know about it and take action the difficulty i would say to you and you said one of the um central signs is severe uh eczema i mean the many causes of eczema as you know but the problem is for example if we have someone with severe and remitting eczema as a child is a two to three year wait list disease for example a dermatologist you know and again i do stress it is a complex condition i think sometimes it is uh it is it is sort of taught to be there's only there's allergies and there's people who get anaphylaxis and we know that it's much more complex than that and uh so uh and i think in fairness to the say public health nurses or even gps is that uh you know it is a complex condition that does actually require a specialist assessment and you know so i think too it would be difficult for this you know certainly after a specialist assessment and if there's a role for the gpu for the public health nurse maybe there's um i would like i would like to add um just uh some data around actually the waiting lists um so 2022 data shows that the that the highest proportion of children were waiting 18 months for their first clinical immunology appointment and at the end of 2023 462 adults were waiting for their first clinical immunology appointment okay and 244 waiting for more than six months and i would also stress that we need structural change here and it's not just short-term change it's actual policy change here and legislation and so we haven't allergies haven't been heard in the iraq since 2014 and only in the unfortunate case of emma sloan who was a child died on o'connell street and from um ingesting her allergen and didn't have access to emergency medication and this led to obviously changes in legislation and but absolutely nothing was done after that in terms of structural change and safeguarding our children and so i would add like you know i just completely stress here that it's changed it's it's policy change now it's legislation it's um recognizing allergies is a public health issue and we say early intervention is absolutely key and without this the the disease takes hold okay so it progresses and it leads to a chronic condition and a lifelong condition we can stop this and there's evidence to suggest that it can be stopped and we can't our children cannot live with letting a disease progress like this what other condition will be left without treatment an active proactive treatment instead of passive skin protests that that are deemed useless um in the allergy community and with clinical um specialists um they don't um you know they don't um yeah i suppose we come back to your point um um mr daily that primary care while yes we appreciate it needs it's a complex allergy and it needs multiple pediatric consultants varying appointments at the very basic primary care level in our community we feel there is something missing and one of our pillars that we have in our document is awareness and education and from a gp level where you have someone that presents with a young child a baby with chronic um eczema that's the point where we can inflict change huge change and stop this atopic march this allergic march that can take place and that's where potentially we can prevent allergies from exacerbating we've got in our document i suppose a lot of our members have given testimonials and if you read through those you'll see the evidence where we've had for example one of our members um went in for an appointment with their gp young baby with extreme eczema um took some time to get the appointment eventually was seen two years later almost two years later by a dermatologist um the eczema had exacerbated by that stage they weren't aware of the link between eczema and allergies and if we had that education piece where from the get-go when a parent comes in with a child with eczema that they're at least told that the education and awareness piece starts there going from the gp to the parents they can at least be mindful of it do i not need to start to introduce the allergen early which is now the evidence that's coming through when my children were younger it was different it was avoid nuts um now it's introduced from about three months old and it's that education and awareness piece that's very easily done with no extra resources needed at a community level and if you can get that knowledge in in that case with our member two weeks before that child's second birthday they went into anaphylactic shock at home having eaten a home-cooked meal called 999 and it was the first they ever realized that there was any link between allergies eczema inflammation in the body a child unnecessarily going into anaphylactic shock in their home in their own home um they were lucky they were within reach of an ambulance within 15 minutes that's unheard of in a lot of our rural areas in ireland that an ambulance would be able to get there in that time um you go to rural parts of gallway claire mayo it would be yes so you're well aware of how long it might take and even to get into the likes of university hospital limerick where we're seeing you know complete backlog of the system there so while there is the complex cases where we will need to look at treatments it's our pillars that we've identified there's three of them medical support standardized care and awareness and education there's a lot we can do at the very primary level the iphone document that we have in our pack outlines those three steps primary care secondary care tertiary care but at a primary care level there's a lot we can already do education awareness for for parents thank you