This is a very difficult, um, situation, particularly for the families who are struggling with someone with Friedreich's ataxia, and they know that they're getting worse, they know that their time is limited, and this long-drawn-out, sometimes impersonal it would seem, um, procedure is very hard on them.

Yeah, I wrote, um, just because, um, I suppose I have concerns that it's a very, uh, black box kind of approach for families, and families with any kind of rare condition, um, are often aware of these medicines being developed well before any of the people working in healthcare because, of course, they're tracking what's going on worldwide in terms of any kind of hope for, for any kind of drug that might help.

And as soon as a drug appears on the horizon, th- you know, people will start petitioning for access to it, and I think it's very difficult for families, and often for staff, to understand why it, it, it, you may not g- actually get access to the drug and why it takes so long to make a decision, and really just raising the question, are we really doing this the right way? And perhaps there's a better way to actually approach this process.

Um, o- on that basis, I suppose, and forgive me if I, if I, if I'm being simplistic here, is it that the HSE w- goes, "Well, it's costing X," which is a huge amount of money, "and, and the benefit is Y, and if, if X outweighs Y, we, we don't do it." I- is that basically what this boils down to for them?

Well, y- I mean, those calculations are made all the time in the health service, as you know, and, um, on the cost size- side, there will be a lot of work done directly with the drug companies to try and beat the costs down as low as possible.

A- and many of these drugs are designated by the European Medicines Agency as orphan drugs, and that means that the drug company says, "We actually...

The, the population of people, uh, who are affected by this condition is so small that we can't make this drug, um, in any way, you know, possible, um, from a cost-effective point of view without some kind of government supports." So, so this is, there's a lot of back and forth on that front, and those negotiations take a long time, and in, in the meantime, there would be calculations done around if you can keep somebody, you know, obviously in a healthier condition with better mus- muscle strength and better mobility for longer, then they're going to use hospital-based services less.

They may actually not need as much community-based services, and then there's a cost saving there.

Why do you say

that? I suppose what we see across Ireland really is more the issues that people have, food cost, absolutely everybody's agreed, you know, all of our bills have gone up there.

But when we look at access to cheaper food, we have these things called food deserts and then we have these things called food swamps.

So in Ireland, we have people living in food deserts, which are, if you're in an urban area, you're a mile from supermarket or a grocery store as opposed to a convenience store.

And then a food swamp then is where there's a lot of, I suppose, unhealthy food options in, again, in a small sort of residential space.

So I don't know whether this would make a difference in the sense that the people who currently don't have access to cheap, healthy food options are are just far removed from those kind of services.

There's obviously a transport issue as well.

Does that make a difference?

When it comes to rehab for a brain injury or indeed for other types of injury, how well equipped are we here?

Well, we are well equipped, particularly in the acute phase.

Children will be brought through the emergency department and then if necessary, they'll go to the operating theatre or the intensive care unit.

But it's really in the later stages.

A lot of children will require staying in the hospital on the wards for maybe weeks and sometimes months later.

And then we do have a shortage of good rehabilitation facilities for children.

That's definitely an area where we're quite lacking in services.

Now, going back to that overall announcement on the banning of e-scooters for the under 18s, what's your view on that?

And what does it say, in your view?

[laughs] Well, I suppose you, you can kind of sit in two camps, and, and most of us would probably sit somewhere in the middle, but you can be kind of, have a very libertarian approach and take the view that there shouldn't be any bans on anything, and it's down to individual choice.

Um, even if you're choosing something that's going to damage you.

And then you can be all the way on the other side when you, perhaps a more kind of collective view that you think, uh, that there should be laws to restrict things because it's all for the greater good, and that you're willing even to maybe sacrifice a couple of your own rights to go out and do something or buy something in order to make sure that the, the health of the community is improved.

A- and I, and I, as I say, I think, you know, a lot of us would sit maybe somewhere in the middle of that, depending on what the harm is.

And, and really the tipping point, if it is a kind of a scale, the tipping point seems to be around when it starts to harm someone else and, and that's called the M- the, the Mills principle.

Um, and it's, you know, you can be perhaps watching violent pornography, and that's what you wish to do, but if that i- you know, if that's starting to impact perhaps on your partner or someone else in your community and harming them, then it's time for the state to step in a- and, and that seems to be the tipping point.

Mm

Suzanne, do you think children are at extra risk during the heatwaves because we don't have enough safe waterways and those kind of free leisure facilities for them?

I do, yeah.

I mean, I think children seek out water wherever they can find it.

You know, we've had kids come in who, obviously, paddling pools and ponds can be a problem, but even children who've just literally gone headfirst into a bucket of water.

I think if you have kids, it's being aware all the time about water and safety.

But maybe we're not helping children in the country by not providing free or subsidized swimming lessons.

You know, I think swimming lessons are very expensive for a lot of families.

In terms of when they do find water, are there enough safe places for kids to swim, do you think?

Yeah, yeah

...

so, um, I don't have any connection there.

Um, Professor Daly is a seasoned operator and manager of hospitals.

This is the second hospital he's been managing.

I don't imagine that that piece of information came out at the Oireachtas hearing by accident.

To me, there's something to, to, to be asked around why this has come out in the public domain like this.

Suzanne, give briefly on that.

Now, is that a function of inexperience with alcohol consumption and a simple rite of passage that everybody goes through, or is it a red flag?

It is a red flag.

And I suppose, yes, there's a rite of passage around it.

But I think in Ireland, we need to really, I suppose, ask questions about that.

We shouldn't all be nodding along and telling stories about our own stories about getting drunk when we were younger.

You know, that's normalizing the idea of binge drinking.

And we have important questions to ask about that as a society.

What, if anything, is best practice?

Mm.

Um, and it changes shape a little bit, but I, like I, I remember the day, I remember the day he died, and at one stage, I literally lay down on, uh, on the floor in the hall sobbing and, and, and kind of just completely lost.

And I'm so glad because at one point I must have stopped and opened my eyes, and I saw the faces of my children, and they were, they were terrified.

They were absolutely terrified.

Mm-hmm

... and very obviously enjoying them.

So it's important that, you know, you're not kind of saying, "Oh, yuck," you know, "broccoli," um, you know, that you're enjoying it.

And you just put one piece on their plate and always will.

Yeah,

absolutely.

Every time I donate, I notice that they've added on another new question or two because it's something that keeps changing.

If you remember a couple of years ago, there was the Zika virus that I think might have been originally from South America.

So, you know, that now has to be accounted for on the donation form.

And if you are donating for the first time, you'll be invited to have a private interview with a nurse so that they can tease through any of the things that you might have answered yes to on the questions and indeed, you know, ask the nurse about donating.

And so the ways of attracting people to do it more, apart from just, you know, alerting them to the fact that there's a need, in any other jurisdictions do they pay people? And is there evidence that works or not?

In countries that are less well-resourced, there is some payment for blood, but actually research would actually show that countries like ourselves, where they have stuck with 100% voluntary donation, they actually have a higher proportion of regular donors.

Dr. Suzanne Crowe was joining us here, Jamie, on the line as well today because, Suzanne, are these kind of assumptions about gender, are they something that you've ever experienced or witnessed in your own line of work?

Yeah, it is very common that if you hold a title like chair or president or director as a woman, the assumption is often made that that head, that holder of that title is male.

To be honest, it happens a lot.

It happens particularly with emails and letters.

They will be addressed to you as a man.

But I do think that Micheál Martin probably did the right thing by not picking him up on it.

You know, it's an awkward moment, but it's probably not the moment to bait the president of the U.S.,

I was a little surprised that he didn't say something, like not make a huge issue out of it, but just acknowledge it.

Now, from witnessing it, do you think it is a function of people not knowing what they are meant to do or people deciding that they're special?

We all know the rules.

I mean, you know, you have to obviously do the learning and pass the test.

So I think everybody knows the rules.

You're just shaving a little centimetre here.

You're just... tiny, just pushing the rule a little bit, reasonably safe in the knowledge that there isn't going to be anybody around to stop you.

And I think it is what is causing problems.

Did you, in any of the lessons that you're giving or any of the supervised driving, did you see anybody get pinched for any of this?

hand experience of that?

Well, I've had a variety of different experiences, but a couple of years ago, six years ago, my husband died suddenly.

Thank you.

And in the year or two that followed, I decided that we all needed a bit of bereavement, counselling and therapy to address a couple of the things that had happened.

And that wasn't covered by my insurance plan because I hadn't predicted that we were going to need cover for counselling.

And I did get into a bit of a to do with the insurance company, but they were absolutely adamant that it wasn't in the plan and therefore they weren't going to cover it and reimburse me.

And that's fine.

down looking at it

And in certain cases, depending on the organ that's being donated or organs that are being donated, might the body have to be kept on life support for a while? Or can they all be taken out and, you know, be preserved in some other way?

No, all the organs are taken on the same occasion, on the same trip to the operating theatre.

All the organs are taken.

Now, sometimes we will have teams coming from the UK to help us take some of the organs because we share the organ pool with the UK because we're quite a small population, obviously, and we want to make the best use possible of any organs that are donated.

So if we don't have a suitable match in Ireland, for example, for a liver or for a kidney, that organ will be offered to the UK.

But then we benefit from the arrangement that lots of our patients will go to the UK, particularly children waiting for transplants.

A lot of those are done in the UK from UK donors.

Is there much in the way of altruistic donation that takes place in this country?