Hi, it’s Patrik Hutzel from INTENSIVECAREHOTLINE.COM where we instantly improve the lives for Families of critically ill Patients in Intensive Care, so that you can make informed decisions, have PEACE OF MIND, real power, real control and so that you can influence decision making fast, even if you’re not a doctor or a nurse in Intensive Care!
This is another episode of “YOUR QUESTIONS ANSWERED“ and in last week’s episode I answered another question from our readers and the question was
Is it Okay for My Brother in ICU To Be a Part of a Research Study?
You can check out last week’s question by clicking on the link here.
In this episode of “YOUR QUESTIONS ANSWERED” I want to answer a question from one of my clients Megan, as part of my 1:1 consulting and advocacy service! Megan’s brother is critically ill in ICU and Megan is asking if her brother will end up as another Alfie Evan’s story.
My Brother is Critically Ill in ICU. Will He End Up As Another Alfie Evan’s Story?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Megan here.”
Megan: Terrible. Terrible. Police everywhere, and the interesting thing was how it really, really galvanized people into action at last, and the people went there and they demonstrated because they knew in their hearts that this was wrong. They knew. The people knew.
Patrik: Yeah, people voted with their feet. No matter what the judge did, people were voting with their feet.
Megan: With their feet. Yeah.
Patrik: No matter what the court decided, they will be very, very careful going forward. There will be another Charlie Gard and there will be another Alfie Evans. It’s not…
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Megan: Hi Patrik.
Patrik: Hi Megan. I don’t know what happened. I think I might’ve pushed the wrong button. So it’s not a matter of, it’s a matter of when there will be another Alfie Evans and when there will be another Charlie Gard. And no matter what hospital those kids are ending up in, they will be very, very careful how they will go to the public if they go to the public. And the families know now there’s leverage. They know there’s leverage, and they know, no matter what the courts decide, no hospital wants to have that publicity.
Megan: I mean, it was the most terrible publicity. And what I think has damaged that hospital’s reputation forever, to be honest.
Patrik: Well, they had a poor reputation even 10 years ago, now it’s even worse.
Megan: And if you have a sick baby, would you take your babies there? No.
Patrik: Well, I give you my own personal view. I used to work at Alder Hey in 2003, I worked in the UK. I used to work at Alder Hey for about six months in 2003. I worked in the ICU there. I had a fantastic time there and then, I have nothing bad to say about Alder Hey ICU there and then. That is with me 15 years younger, not as experienced as I am now. I had only been in the UK for about a year then. So I was a lot younger, it was my first sort of trip overseas. I saw it with different eyes. I have nothing bad to say about the staff there and then, nothing bad to say about what they did there and then. However, Alder Hey even then, had a very bad reputation because there was a scandal maybe in the late ’90s. They were selling… What did they do? If you Google-
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Megan: Body parts.
Patrik: Body parts. I mean, horrible.
Megan: Oh, I remember this. Oh, I remember this. Oh, I’d forgotten.
Patrik: So all the hate is almost going like, not everybody would remember what happened in the ’90s, but people who do remember what happened in the ’90s, they might go like, “Oh yeah, of course, this is happening.”
Megan: I remember this. Yes, I remember this.
Patrik: So Alder Hey is doing everything they can to go from one disaster to another.
Megan: To another. Yes. Oh, Patrik. Yes. So this hospital really has a very tainted reputation.
Patrik: Shocking.
Megan: I’d forgotten about that. I remember it now.
Patrik: Yeah. So whoever’s in charge of PR there, I mean, seriously, seriously. You can go back to the courts and you can say, “Oh, well, what do you want? The courts decided this and this.” Well, you can see that whatever the courts decide, people are voting with their feet. And no matter what the courts decide with the next baby or with another patient, people will vote with their feet again.
Megan: Yes. It’s really, really, really galvanized the public. Isn’t it?
Patrik: Absolutely. Absolutely. And it will happen again. And the UK, or NHS I will say, will have a big, big problem going forward because it will happen again, and it will galvanize people again. And the church will not give up.
Megan: No, no.
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Patrik: The church will not give up on this. That just started.
Megan: Yes. So this is going to become, as you say, it’s an ideological battle.
Patrik: Very much so. And you don’t need to be a Christian. You don’t need to be a practicing Christian to see what went wrong there. You don’t need to be of any religion for that matter to see what-
Megan: To see what went on. I mean, by the end of it, there were police, weren’t there? In the corridors.
Patrik: There were about, and I was part of it too, he organized a Facebook group, Alfie’s Army.
Megan: I joined it.
Patrik: Right, right, I’m in it too. So there were about, I don’t remember how many, 10 thousands of people. I mean, he basically just put a 32nd video in that group and he said, “Hey, people in Liverpool, please come to Alder Hey.” And he said, “Jump.” And they asked, “How high?”
Megan: Yes, yes, yes. Because he, the father, was so brave. I thought they both were. People really liked it. I was so impressed by him. And people were saying awful things because you’ve always got the other side, haven’t you? Making the problems. But I was just so impressed by him. He’s young, and he felt out of his deck because he said, “I’m not as educated.” And tried to talk down to me, but he just didn’t care. He just kept getting, I admire that man very much.
Patrik: They completely underestimated him. They completely underestimated him. And because he was young, and they completely underestimated how he would leverage social media, him and his followers. And they completely underestimated the mood of the people. And what a terrible misjudgment from the NHS, from medical professionals even, what a terrible misjudgment.
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Megan: Yes. They just totally and absolutely messed the whole thing up from start to finish really. But the finish was a poorly. It was in all the papers as you know. The Italian, the charts, the Italians are offering Alfie a place, they have a plane standing by. How can any… I mean, who, as you say, was doing the PR would say no? And I’ve often wondered Patrik, why? Because they didn’t want to set the precedent, like you said.
Patrik: They didn’t want to set a precedent, and they needed to make sure that the court in UK is not being overwritten by-
Megan: Undermined.
Patrik: … Potentially by another country. I guess maybe the Brexit coming into play there as well, I’m not sure, I can’t talk about that, that’s not…
Megan: But it could be. It could have been.
Patrik: It could be, could be. The other things that you might have heard in the case is, in the beginning, before the Italians came on the scene, there was a hospital in Munich who was also prepared to take him. And I wasn’t surprised by that at all, because having done my nurse training in Germany and having worked in ICU in Germany, I wasn’t surprised by that at all. Because there’s just another approach, a very different approach. Very different approach. It’s much more humanistic. People question a lot more, I think. And unlike in the NHS or like here in Australia, in Germany, the healthcare is for free, like in the UK or here, but the good news in Germany is healthcare for free, but it’s still funded by health insurances.
Patrik: So even though it’s free, you still have to choose a health fund, and the health fund makes sure you get value for money. So that is the big difference between the NHS probably any country on the continent, because the health system, in my mind, is really competitive, which makes it, it’s still free, but it’s still competitive and it makes sure people get value for money.
Megan: Excellent. How excellent. Do you think that, of course, Germany, EU again, it was the same thing? Or do you think it was just any place outside the UK they weren’t go to…
Patrik: I don’t know enough about France, for example, in terms of health system, I don’t know enough about that. What I do know about Germany in particular is, yes, it didn’t surprise me that the hospital in Munich came out and said, “Yeah, we’ll take him. No problem.” It didn’t surprise me. Because also with the view of, like I talk about intensive care at home, that actually started in Germany 20 years ago. It begin in Germany. So in Germany, people just count two and two together who understand the industry and think, “Yeah, yeah, Alfie, he gets a tracheostomy and then he could go home.” So in Germany, people who understand this field, they just counted two and two together. We see Italians, because I know the case in more depth, the Italians was purely driven by the Catholics.
Megan: Indeed.
Patrik: So the whole Italy thing, as far as I understood, was purely driven by the church. Whereas in Germany, it was more driven by, okay, probably a humanistic aspect, but also again by people who understand what Alfie was going through and what could be done and what could not be done. In a very different sort of context where people think about, how can we get these people home, and even if for end of life care? I mean, that was never even a point of discussion. And they kept asking for it. They said, “Well, we’ll send him home with ICU nurses, he can die at home.” It was shut down, it’s ludicrous and it’s nonsense.
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Megan: It’s because they wouldn’t even let the parents take him home, would they?
Patrik: Correct, correct. That’s all they asked for. They asked for, let him die at home, or let him die in Italy, where people listen to us.
Megan: That they were denied both. They had to die in that hospital.
Patrik: They did not deny that he was dying, they did not question that. But they questioned the approach and rightly so.
Megan: Yes. Because I presume the Italians would have said, “We’ll take him here until the natural end.”
Patrik: Correct. Correct. Until the natural end. I mean, I don’t know whether that’s true or not, but there was some talk in the end, and they posted that on Facebook, that they kicked the mom out. I mean, it’s just horrible.
Megan: They kicked the mom out?
Patrik: Yeah, they kicked the mom out in the end or whatever. Look, as I said, I’m not sure, maybe that was propaganda, in the end, I don’t know. But there was definitely in the last days of Alfie’s life, there was definitely talk about, that there were incidents where they kicked out the mom because she didn’t want to leave. And you just go like, whatever.
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Megan: Terrible. And for once the public rarely, rarely did rally and they knew it was wrong. And I think so many of us watching this unfold, we just knew. And it was just astonishing to see the behavior of the trust and the court for me, and how the NHS has changed in these years. Terrible. It’s an ideological thing, this thing. Terrible.
Patrik: Yeah. And it’ll be, another case could come up tomorrow. And it will.
Megan: And it will, and there will be this clash between the Catholic church and so on, and the establishment if you like.
Patrik: Yeah. I think as an establishment, people that I spoke to within the Catholic church at the time they were telling me, I can’t even remember now, they were telling me, they were talking about a group, about an ideological group, and I can’t even think what the name was. I’ve heard it before. And I believe it’s got its foundations in the UK, and it’s an anti sort of religious established group. If I can remember the name you would say, “Oh yeah, I’ve heard of them before.” It’s almost like a bit type of… Ah, what was the name? I can’t remember now, but it’s very anti-church.
Megan: So the Atheist type.
Patrik: Yeah, the Atheist type, but also an establishment type, people have a lot of money. Ah, Jesus, I can’t think-
Megan: Of the name.
Patrik: … Of the name now, but it’s a very powerful group, I remember that. And also a big disappointment, probably to a degree for me as well. I mean, I’m not British, and even though I live in a country where the queen is head of state, I was really surprised that they were trying to get to the queen. And I just think like, what do you do for your folks?
Megan: Yes, yes, I agree.
Patrik: All of that where I just think, something’s just not right there.
Megan: Yes, I felt exactly the same. And my brother, Ryan, felt very, very, very strongly about this. He was so moved and he talked to me about it every day. Yeah, it’s interesting.
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Patrik: I think everybody who watched this was moved.
Megan: Yes, you couldn’t help but be moved. And the behavior of the establishment, of the courts, was just diabolical, it was diabolical.
Patrik: I think that’s the right word.
Megan: I must say, they’re saying that this could happen here.
Patrik: Yes. And it’s really worrisome that something like that does happen in a first-world country. In a first-world country with sort of similar, not a similar constitution, but to America or Australia, but in a-
Megan: Yes, very similar culture. Yes. That it could happen, it’s astonishing, and it shows something is rotten somewhere, to me. I was horrified, and when he passed away, I just hope that he didn’t suffer too much. Because it seemed that what they did was beyond words then.
Patrik: Yeah. Look, I don’t know whether he suffered in the end or not. What is clear to me is that the family suffered.
Megan: They suffered most terribly. Did you know, Patrik, that she is pregnant again?
Patrik: They had a baby.
Megan: Oh, they had the baby?
Patrik: They had a baby. In the last couple of weeks, they had a baby.
Megan: But it will never change, it cannot.
Patrik: No, they won’t bring back Alfie.
Megan: No, and it won’t change anything. But still I’m absolutely thrilled. When I saw that I was so thrilled for them. The other thing, Patrik, is they managed to stay together. Now, this kind of thing, split couples up. They managed to stay together. I really admire them. I can’t tell you how much I admire them.
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Patrik: No, no, you’re right. I was thinking the same at the time, I just thought, their partnership will be tested.
Megan: Very right. But they held on and gone on to increase the family, and it’s absolutely-
Patrik: Oh, now I do remember what the people from the Catholics told me who the other group is. Yeah. So they were telling me that this whole, let’s just call it euthanasia for now, for lack of a better word. Let’s just say this whole euthanasia movement, which is not called that way, it’s driven by that group.
Megan: That doesn’t surprise me in the slightest.
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Patrik: That’s what they told me. Look, when they first told me about this, I was just like, “What is this group?” I had heard of them randomly, but I had no idea, then I did a bit of a Google search, so have a better idea now. I’m not too sure what I make out of it, whether it’s just sort of a conspiracy theory, I don’t know enough about it. But they are saying that this group are behind the drive for, again, let’s call it euthanasia for now.
The 1:1 consulting session will continue in next week’s episode.
How can you become the best advocate for your critically ill loved one, make informed decisions, get peace of mind, control, power and influence quickly, whilst your loved one is critically ill in Intensive Care?
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- How to ask the doctors and the nurses the right questions
- Discover the many competing interests in Intensive Care and how your critically ill loved one’s treatment may depend on those competing interests
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- How you need to manage doctors and nurses in Intensive Care (it’s not what you think)
Thank you for tuning into this week’s YOUR QUESTIONS ANSWERED episode and I’ll see you again in another update next week!
Make sure you also check out our “blog“ section for more tips and strategies or send me an email to [email protected] with your questions!
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This is Patrik Hutzel from INTENSIVECAREHOTLINE.COM and I’ll see you again next week with another update!
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