Latest / Tom's Hirschsprung's Podcast / Episode 50 - With Karen Dick

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Episode 50 - With Karen Dick · Tom's Hirschsprung's Podcast

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Speaker 1: You are listening to Tom's Hirshprung's Podcast, where I provide
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Speaker 1: a look into the remarkable experiences of the most inspiring
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Speaker 1: people around Hirshprung's disease and sports. Hello and welcome to
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Speaker 1: episode fifty of Tom's Hirshbrung's Podcast. I have a very
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Speaker 1: exciting one for you today, something a little bit different
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Speaker 1: with me today is a pediatric surgical nurse specialist at
0:53
Speaker 1: Southampton's children Children's Hospital, and I have with me today
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Speaker 1: Karen Dick. Karen, welcome to the pop. Thank you much,
1:01
Speaker 1: thank you so much for coming on. As we said,
1:04
Speaker 1: something a little bit different. You are very much involved
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Speaker 1: in Hirshprung's as a mother and also as a pediatric
1:14
Speaker 1: surgical nurse specialist. If we start with the latter first,
1:20
Speaker 1: in terms of becoming a nurse, why did you want
1:24
Speaker 1: to start becoming a nurse?
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Speaker 2: Well, I think and I talked to my parents like
1:29
Speaker 2: this when I was little into my back I fell
1:32
Speaker 2: out of a bedroom window as you do, and broke
1:35
Speaker 2: my back and spent a period of time, probably about
1:39
Speaker 2: three or four weeks in traction in hospital. And my
1:43
Speaker 2: parents often talk about the fact that I talked about
1:46
Speaker 2: being a nurse at that time. My granddad was also
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Speaker 2: a diabetic and I used to help him give him
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Speaker 2: his injections when I was little, So a combination of
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Speaker 2: that and also my parents always talked about the fact
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Speaker 2: that I wants to be a mum, which doesn't really
2:01
Speaker 2: make much money.
2:03
Speaker 3: It kind of loses money.
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Speaker 2: Yeah, it kind of just developed really in the fact
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Speaker 2: that I just enjoyed caring for people.
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Speaker 4: So it's kind of started from there.
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Speaker 1: That's fantastic. And we were talking as well offline that
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Speaker 1: you have a family or come from very much a
2:20
Speaker 1: family of teachers, so sort of running in the family,
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Speaker 1: is that caring for people, educating people?
2:27
Speaker 3: You educate people try to as well.
2:30
Speaker 1: No, No, you definitely do because you're as a as
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Speaker 1: a sort of hirshbrung specialist. Those types of people are
2:37
Speaker 1: very rare to find within the country, so you do
2:41
Speaker 1: a lot of a lot of teaching of hirshbrungs. Did
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Speaker 1: you go sort of straight into working in Hirshbrungs. No, No.
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Speaker 2: So I started off doing my nurse training at the
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Speaker 2: University of Surrey, and I from the start shows that
3:01
Speaker 2: I wanted to be a pediatric nurse, so I trained
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Speaker 2: in what we call district general hospitals. So I worked
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Speaker 2: on general children's wards, caring for kind of fairly basic
3:11
Speaker 2: conditions that you would see in any hospital as a student.
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Speaker 4: When I then qualified, I did what lots of us
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Speaker 4: does did.
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Speaker 2: I followed my husband, so he got a job down
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Speaker 2: the Southampton I then applied for every hospital in the area,
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Speaker 2: and it was Southampton Chilren's Hospital that gave me a job.
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Speaker 2: I basically turn around and said I prefer surgery over medicine,
3:33
Speaker 2: and they put me on the surgical ward. So I
3:36
Speaker 2: spent nine years working as a staff nurse on the
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Speaker 2: surgical ward at Southampton looking after children that have had
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Speaker 2: basically a specialist general surgery, So anything from your basic
3:50
Speaker 2: everyday sort of appendicitists in growing.
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Speaker 4: Toenails, all sorts of things.
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Speaker 2: Up to then, we would obviously have children that would
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Speaker 2: have surgery for HIRSHBRN and other complex bar related conditions.
4:03
Speaker 2: Children would have stonemas and so on and so forth.
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Speaker 2: About nine years in, having had two years off for
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Speaker 2: good behavior to have my children, I this job as
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Speaker 2: the surgical new specialist came up and I applied.
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Speaker 4: And got the job.
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Speaker 3: It's fantastic brilliant.
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Speaker 4: I'm still here fifteen years on.
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Speaker 1: Yeah, so you have plenty of plenty of experience when
4:28
Speaker 1: it comes to children's wards.
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Speaker 3: Yeah.
4:31
Speaker 1: And so in terms of Hirschbrung's itself, what has changed
4:37
Speaker 1: over the years, because, as we've said, we've got you've
4:40
Speaker 1: got lots of experience with hirs Sprungs. Yeah, and I imagine,
4:45
Speaker 1: I mean I've talked to plenty of people who have
4:50
Speaker 1: told me lots of things that have changed since I
4:52
Speaker 1: was in But that was thirty two years ago, So
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Speaker 1: I imagine in the last fifteen years it has changed
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Speaker 1: quite a bit.
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Speaker 4: Yeah, I think so.
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Speaker 2: I mean, obviously, when I originally started kind of at Southampton,
5:04
Speaker 2: so in two thousand, essentially a higher proportion of our
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Speaker 2: children would basically when they were born, would stay in
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Speaker 2: hospital until they had their surgery.
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Speaker 4: So certainly the way we used to manage it at.
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Speaker 2: Southampton is if the child was managing on washouts, they
5:20
Speaker 2: would stay in hospitals and nurses would do the washouts
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Speaker 2: and then they'd get their surgery or they'd get a
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Speaker 2: STAMA and they would then go home with their STAMA
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Speaker 2: and then come back at a later date and have
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Speaker 2: their surgery. Now what we do is we get children
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Speaker 2: out of the hospital very very quickly. We teach parents
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Speaker 2: to do washouts, so parents go home doing washouts once
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Speaker 2: or twice a day, depending on what's required.
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Speaker 4: And then the.
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Speaker 2: Child comes back at older age, so at six months,
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Speaker 2: and have's their pull through.
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Speaker 4: When they're older.
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Speaker 2: Part of that is COVID as well, so that delayed
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Speaker 2: slightly how quickly we can get children in to have
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Speaker 2: their pull throughs. But absolutely the major thing was being
6:02
Speaker 2: able to teach parents how to do washouts at home,
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Speaker 2: which is the big thing that's changed. And I think
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Speaker 2: just also the way that surgery is done selviously. Again,
6:15
Speaker 2: when I first started, it was a big laparotomy, so
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Speaker 2: big abdominal scar that the child would have in order
6:20
Speaker 2: to have the surgery done. And now we're doing keyhole
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Speaker 2: assisted TRANSAI also through the bottom, so they don't end
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Speaker 2: up with massive scars at all.
6:30
Speaker 3: Wow, that is interesting.
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Speaker 1: That's something certainly that I've seen and heard from people
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Speaker 1: that the scarring, yes, something that has really really changed.
6:41
Speaker 1: I mean, yeah, if anyone was to see my stomach,
6:44
Speaker 1: it is ripped shreds.
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Speaker 3: It is scarred all over the place.
6:51
Speaker 1: I don't mean ripped as in muscular unfortunately ripped us.
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Speaker 3: It just tore apart.
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Speaker 2: Yeah, and when I start, one of our surgeons used
7:01
Speaker 2: to do what we would call the hockey stick. So
7:03
Speaker 2: is it being a straight line. They would have an
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Speaker 2: L shaped star. That's how they would do the surgery.
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Speaker 2: But yeah, it's I mean, obviously some of our children
7:11
Speaker 2: still end up having big abdominal scars, but we try
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Speaker 2: and avoid it if we can.
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Speaker 1: It's interesting, I mean, I one thing that I've always
7:19
Speaker 1: called us is a big scar that goes sort of
7:21
Speaker 1: across the middle for the pull through, and for me,
7:24
Speaker 1: it's always been the train track. I don't know if
7:28
Speaker 1: you have another broader name for it, but for me,
7:30
Speaker 1: I've always called it a train track.
7:33
Speaker 2: It looks like it does, yeah, with the little stitches
7:35
Speaker 2: either side.
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Speaker 4: Yeah, yeah, yeah, it's not it's different. People call them
7:40
Speaker 4: different things.
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Speaker 2: Most of our kids talk about their shark bites where
7:43
Speaker 2: their stoners have been, because they kind of have that
7:47
Speaker 2: sort of slightly puckered round shape.
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Speaker 4: But yeah, it's lots of different scars, but yeah, there.
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Speaker 2: Were more and more of our kids now have three
7:55
Speaker 2: tiny one centimeter scars.
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Speaker 4: Across their abdomen and that that's all you see.
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Speaker 3: Wow.
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Speaker 1: I mean, that's that's really interesting just from kind of
8:05
Speaker 1: a I guess physical point of view. That's incredibly interesting
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Speaker 1: how that's progressed over the years obviously the do you
8:16
Speaker 1: think that in time there will always be a scar
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Speaker 1: of some kind or will science get to the point
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Speaker 1: where there will just be no visible scars whatsoever?
8:29
Speaker 2: Oh? I think if you talk to the people that
8:32
Speaker 2: are doing tissue transplants and all sorts, there won't be
8:35
Speaker 2: any scars at all eventually, because we'll inject some sort
8:38
Speaker 2: of nerve sell into something and it will grow and
8:42
Speaker 2: migrate and there'll be no scars because we won't have
8:44
Speaker 2: to remove the bit of vowel that's affected.
8:47
Speaker 4: But that's a long way in the future.
8:49
Speaker 2: So there will all be always be some sort of scar,
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Speaker 2: I think, while you've always got to remove some sort
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Speaker 2: of vowel.
8:58
Speaker 4: Whether those scars are visible or whether.
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Speaker 2: They're so when we have children that literally only have
9:03
Speaker 2: it done through their bottom so transannally you can't see
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Speaker 2: the scar because it's inside, Okay, So.
9:10
Speaker 1: It might just be a case of just internal rather
9:13
Speaker 1: than external. Yeah, that's interesting. I mean, I but I
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Speaker 1: think again, going back to thirty years ago, I don't
9:20
Speaker 1: think they've ever seen that it would have gone from
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Speaker 1: that sort of big train track or big scars or
9:27
Speaker 1: whatever to as you've described now. And I've scene with
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Speaker 1: various people who've shared their scars just sort of very
9:34
Speaker 1: tiny scars. So it's amazing the progress that's you made
9:38
Speaker 1: absolutely in the last sort of well to three decades. Yeah, fantastic.
9:44
Speaker 3: Yeah.
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Speaker 1: Something else that we were going to discuss as well
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Speaker 1: is that you're not just a very talentediatric surgical nurse,
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Speaker 1: you are also a founding member part of the Hirshbruns
10:01
Speaker 1: Family Connections.
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Speaker 3: Group yeah Facebook.
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Speaker 2: Yeah.
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Speaker 1: Would you like to talk a little bit about sort
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Speaker 1: of how and why that started?
10:09
Speaker 2: Yeah, So essentially as I was kind of starting this
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Speaker 2: role and really kind of learning more and more about
10:15
Speaker 2: supporting families with hirshbunels.
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Speaker 4: So I think it is all about supporting the family.
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Speaker 2: So although the child is the person that's got the condition,
10:23
Speaker 2: I think it's to be honest, it's the parents that
10:26
Speaker 2: live it.
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Speaker 4: Because if you talk to most adults who have.
10:28
Speaker 2: Got Hirsh brunels, they don't really remember their time in
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Speaker 2: hospital as a baby. Obviously, if their their time in
10:36
Speaker 2: hospital gets longer and they end up having stamas and
10:38
Speaker 2: multiple other complications.
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Speaker 4: They do. But for a lot of our families these days,
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Speaker 4: it is the child.
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Speaker 2: It's they're kind of by the time they're old enough
10:46
Speaker 2: to remember, they're no longer having to come to hospital.
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Speaker 2: So's it was comments from parents going, well, we've talked
10:53
Speaker 2: to our family and.
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Speaker 4: Friends and no one's ever heard of hirshbrungs.
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Speaker 2: And we have to go through the whole Why is
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Speaker 2: your child not toilet trained at three? Why is your
11:02
Speaker 2: child still and nappies at school? Why is this happening?
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Speaker 2: Why is that happening? And you try and talk to
11:07
Speaker 2: these people and they have no idea. So I started thinking, well,
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Speaker 2: hang on a second, I know there are three families
11:14
Speaker 2: in Portsmouth that don't actually live that far apart from
11:17
Speaker 2: each other, and obviously I can't hand out their names
11:21
Speaker 2: to each other without asking for consent and all this
11:23
Speaker 2: sort of thing.
11:24
Speaker 4: So I started.
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Speaker 2: Talking to these families each individually, saying would it be
11:29
Speaker 2: useful to have And obviously Facebook became more of a thing,
11:34
Speaker 2: and so we started basically just creating a closed Facebook
11:39
Speaker 2: group to just kind of connect families together. We were
11:46
Speaker 2: very keen that that was a positive group, so as
11:51
Speaker 2: in not just sharing all the horror stories of being
11:54
Speaker 2: in hospital, which obviously support groups can end up being,
11:57
Speaker 2: but it's also about sharing the kind of the positive stories.
12:01
Speaker 2: And once that started and we started having kind of
12:06
Speaker 2: this group, we suddenly realized that actually because of Southampton
12:10
Speaker 2: and where it covers, so we obviously we cover the
12:13
Speaker 2: whole of the South Central and that includes the Channel Islands.
12:16
Speaker 2: So we have a couple of patients who live on
12:19
Speaker 2: in Guernsey and Jersey who are potentially the only patients'
12:24
Speaker 2: children at the time that live on the Channel Islands.
12:27
Speaker 2: So we started trying to organize get togethers and fom
12:31
Speaker 2: get togethers. When this because if you live on the
12:34
Speaker 2: Channel Islands, the Channel Islands pay for you to fly
12:36
Speaker 2: to Southampton to come for your clinic appointment. But so
12:39
Speaker 2: these families would get a very early flight in the morning,
12:43
Speaker 2: all the day before and then spend twenty four hours
12:45
Speaker 2: in Southampton before flying home the next day or something
12:48
Speaker 2: on those lines. So we would try and organize and
12:51
Speaker 2: coordinate getting parents together to meet so that they could
12:56
Speaker 2: kind of meet other people and other children hirshbrungs and
12:58
Speaker 2: it just started off very We have fairly kind of
13:02
Speaker 2: a few country parks around Southampton where you can kind
13:05
Speaker 2: of get together, and so we decided to hire one
13:08
Speaker 2: of their fields and just kind of get everyone together
13:10
Speaker 2: or hire a bouncy castle. And it started off small,
13:13
Speaker 2: and then various people started saying that, well, we've actually
13:19
Speaker 2: got a little pot of money from this person over
13:21
Speaker 2: here that we want to give you, and then this uncles,
13:24
Speaker 2: I'd actually I'd like to run a marathon and give
13:25
Speaker 2: you the money that I raise and all this sort
13:27
Speaker 2: of thing. So slowly this we started getting people wanting
13:31
Speaker 2: to give us money. So we decided that we ought
13:32
Speaker 2: to put it in a part and do something with it.
13:35
Speaker 2: So we basically myself and three parents who were initially
13:42
Speaker 2: the people that I kind of joined together. They kind
13:46
Speaker 2: of they two of them are connected in the nanator
13:48
Speaker 2: unit when their kids were in together at the same time,
13:50
Speaker 2: and realized they didn't live that far apart from each
13:52
Speaker 2: other base with Hirshbrung's, which was very bizarre at the time,
13:56
Speaker 2: and so yeah, we just kind of decided that we
13:57
Speaker 2: would pull this together and came up with some ames,
14:00
Speaker 2: which is to get people together support families that are
14:03
Speaker 2: in hospital with Hirshbrungs in Southampton, but kind of keep.
14:07
Speaker 4: It local because.
14:10
Speaker 2: People that have listened to this may realize that if
14:13
Speaker 2: you're treated in Southampton, the way we look after patients
14:16
Speaker 2: is slightly different from the way you'll be treated at
14:18
Speaker 2: a different specialist center because there is no hard and
14:22
Speaker 2: fast rules of how you care for a child with Hirshbrungs,
14:24
Speaker 2: so everywhere does it differently.
14:26
Speaker 4: So if you go on a national support group, you will.
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Speaker 2: Get people go, oh, we'd never do that, but we
14:31
Speaker 2: do this, so yeah, and that's where it came from,
14:33
Speaker 2: to try and help and support basically the families.
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Speaker 3: Fantastic.
14:44
Speaker 1: I think that's a really interesting point you make when
14:47
Speaker 1: you talk about national groups or international groups. I've had
14:51
Speaker 1: a wonderful woman called Melissa jones On and she runs
14:54
Speaker 1: the UK Hirshprungs group, and there's so many differing opinion
15:00
Speaker 1: and advice. I always, especially with this podcast and anything
15:04
Speaker 1: I post on Facebook or Instagram, I always try and
15:08
Speaker 1: steer away from advice because my experience is going to
15:13
Speaker 1: be different to other people's experience. And also I'm not
15:16
Speaker 1: a doctor or a nurse, so I don't want to
15:18
Speaker 1: start saying you.
15:19
Speaker 3: Need to do this, so you need to do that.
15:21
Speaker 1: But unfortunately I do see I do see quite a
15:24
Speaker 1: few people who say, well, what about doing this, and
15:27
Speaker 1: you should do that and you should get it.
15:29
Speaker 2: So yeah, see, when we started the support group, I
15:32
Speaker 2: think a lot of supports who scrub struggle because it
15:35
Speaker 2: tends to be a parent that starts it. But we
15:39
Speaker 2: made a point of myself and I now have colleagues,
15:43
Speaker 2: which is very exciting because I didn't want her started.
15:47
Speaker 4: We have made a point.
15:48
Speaker 2: Of having our own work based Facebook profile so that
15:53
Speaker 2: we can be in those support groups. So basically, if
15:57
Speaker 2: parents do reach out to other members and go what
15:59
Speaker 2: should I do? The default answer is you need to
16:01
Speaker 2: contact can Jo Roader, which is like our Facebook tag.
16:07
Speaker 2: So they're just constantly send them back to us. And
16:09
Speaker 2: if we're not, if you don't spot it, it means
16:11
Speaker 2: those families give us a call because they've been told
16:13
Speaker 2: by everyone else that they've got to call us.
16:15
Speaker 3: So yeah, that's brilliant. That's brilliant that they then.
16:19
Speaker 1: Effectively refers to especially which which kind of should happen anyway,
16:23
Speaker 1: And I know you've mentioned about they're being national groups.
16:26
Speaker 1: There's also one another one and part of which is international.
16:29
Speaker 1: I mean, it's all about ten thousand people on Facebook.
16:32
Speaker 1: I don't know whether you're part of that one as well.
16:34
Speaker 4: I try to avoid it.
16:35
Speaker 2: Yeah, they have they kind of you get a bit
16:38
Speaker 2: overwhelmed with information, do you do.
16:40
Speaker 1: I mean, for me, it's great for getting guests, so
16:44
Speaker 1: I think I'm part of every group that I possibly
16:46
Speaker 1: if you part of, And it's also interesting just to
16:50
Speaker 1: hear other people's stories. But I think that has about
16:53
Speaker 1: ten thousand, maybe just over members on it, and you
16:56
Speaker 1: do see everything and anything. And I really like one
17:00
Speaker 1: of the points you made there where it wasn't going
17:03
Speaker 1: to be horror stories or constant doom and gloom, because
17:08
Speaker 1: that's very much my principle on here. Yeah, it is
17:11
Speaker 1: about it's about ups and downs. Obviously, you know you're
17:14
Speaker 1: not going to just talk wholly positively the whole time,
17:19
Speaker 1: but it is about trying to not you know, scare
17:23
Speaker 1: people off.
17:24
Speaker 2: I guess, yeah, I mean, I think, I mean our
17:26
Speaker 2: parents need to have got so we have the kind
17:28
Speaker 2: of the two two groups.
17:30
Speaker 4: So we have the support group, which is still a
17:32
Speaker 4: closed group.
17:33
Speaker 2: And parents have to request to join, and then we
17:36
Speaker 2: have our kind of our charity page which is obviously
17:40
Speaker 2: open to everybody to kind of be nosy about, and
17:42
Speaker 2: we're hoping to develop a bit more. But yeah, the
17:45
Speaker 2: closed group, we are very much about trying to help
17:49
Speaker 2: each other out and it being positive and encouraging people
17:52
Speaker 2: to say, look, we've had a small win. We've had
17:55
Speaker 2: ex child has had not been in pads for three
17:59
Speaker 2: days and hasn't an accident.
18:00
Speaker 4: It's those those little things.
18:03
Speaker 2: And also we've got some teenagers and now that have
18:05
Speaker 2: gone up through the group, and some adults that are
18:07
Speaker 2: in the group going well, actually.
18:08
Speaker 4: You know we were there and look at us now
18:10
Speaker 4: we're now playing.
18:11
Speaker 2: And I've got one of my patients a couple of
18:14
Speaker 2: playing county level rugby for their girls team and this
18:17
Speaker 2: sort of thing with a stonema. So it's still kind of.
18:20
Speaker 4: They're there in the background.
18:22
Speaker 2: So when you get a parent going why child and
18:23
Speaker 2: be able to do this deal a gloom, they go, well,
18:25
Speaker 2: actually hang on a second, and it's great because they
18:28
Speaker 2: just they don't be as much as I can say it,
18:31
Speaker 2: I can say till the cows come home. This won't
18:34
Speaker 2: stop your child from doing anything. It's it's I'm not
18:38
Speaker 2: talking from own personal experience. Where Upon these other patients,
18:41
Speaker 2: other people in the group are So.
18:44
Speaker 1: That's that's an excellent point, and it's it's one of
18:47
Speaker 1: the sort of many reasons why I wanted you on
18:50
Speaker 1: as well, because we come from the same sort of
18:53
Speaker 1: thought process.
18:54
Speaker 3: You know.
18:55
Speaker 1: The whole the whole reason around this podcast was to
18:57
Speaker 1: find people that you know, potentially you have or have Hirshbrungs,
19:02
Speaker 1: that have gone on and done amazing things. I mean,
19:07
Speaker 1: I was, I was having a look at it, and
19:08
Speaker 1: she yesterday sort of the list of guests that now
19:11
Speaker 1: we're in episode fifty. We've been going, you know, a
19:13
Speaker 1: reasonable while and sort of look back and see, you know,
19:17
Speaker 1: who I've managed to talk to and the list of
19:22
Speaker 1: professions and achievements and so many things that, yes, I mean,
19:29
Speaker 1: Hushbrungs will have its challenges, and we're not saying does it.
19:33
Speaker 1: We're not saying that you're to have the surgery and everything.
19:35
Speaker 4: Or just grab to be able to say that, but
19:38
Speaker 4: you know, and for some for some.
19:41
Speaker 1: It kind of does you know that for some people
19:44
Speaker 1: have spoken to they have the surgery and then no
19:48
Speaker 1: more surgeries after that and everything's fine. But we're not
19:51
Speaker 1: necessarily saying that that's that's going to happen. But what
19:54
Speaker 1: we are saying is that there are people out there
19:58
Speaker 1: who have gone through very similar things to you, and
20:00
Speaker 1: as in terms of Hirshbung's parents, and have gone on
20:05
Speaker 1: to do incredible things. It's not it's not a you
20:09
Speaker 1: now have Hirshbrung so these and these doors are closed
20:12
Speaker 1: to you from it.
20:13
Speaker 4: Yeah.
20:14
Speaker 1: Absolutely, I think that's that's a really really important, really
20:20
Speaker 1: really important message, and I'm really glad you share that
20:25
Speaker 1: share that well.
20:26
Speaker 4: I mean, essentially, I think myself and my.
20:28
Speaker 2: Colleagues would probably feel that's a large proportion of while
20:32
Speaker 2: we do this the job. So I think we talk
20:35
Speaker 2: about the fact that.
20:38
Speaker 4: Prior to us.
20:39
Speaker 2: Being in post, we would the ward would see a
20:42
Speaker 2: lot of children coming in unwell with hirshbrungs and all
20:45
Speaker 2: this sort of thing. I think what we see our
20:48
Speaker 2: role as is to enable parents to look after their
20:51
Speaker 2: child and spot when their things are going wrong and
20:53
Speaker 2: being able to say, hang on, can you know how
20:55
Speaker 2: to manage this? You just need to do X, Y
20:58
Speaker 2: and Z and your child will be fine. And we
21:01
Speaker 2: are seeing far less patients in hospital because we're teaching
21:05
Speaker 2: our parents to be able to manage their child and
21:07
Speaker 2: their condition, which for years and years gone by didn't happen.
21:12
Speaker 2: It was they'd end up in hospital and the nurses
21:14
Speaker 2: would do it and then they'd go on their way again.
21:17
Speaker 1: So yeah, that's fantastic and it comes from I imagine
21:21
Speaker 1: that that comes from giving confidence and because again, if
21:26
Speaker 1: if anybody's unsure, especially with health, the first person they're
21:30
Speaker 1: going to turn to is you.
21:32
Speaker 3: And if you're if you're unsure, yeah, if.
21:37
Speaker 1: You haven't seen something or if you haven't got the confidence,
21:40
Speaker 1: the first person will come to his you. So the
21:42
Speaker 1: fact give them the confidence to go or I've seen
21:46
Speaker 1: this before, parents told me I need to do, so
21:49
Speaker 1: I'll do.
21:51
Speaker 2: We we get, we get the whole. I've got one patient,
21:54
Speaker 2: bless him. He whenever he feels unwell, the first thing
21:58
Speaker 2: he'll say to his mum is don'te phone Karen because
22:00
Speaker 2: she'll tell you to give me a suppository and she goes,
22:03
Speaker 2: Mum goes, I know when he's really sick, because he'll
22:06
Speaker 2: tell me to call you, right.
22:09
Speaker 4: But it's not that she doesn't know to do it.
22:11
Speaker 4: She just giving me a call gives.
22:14
Speaker 2: Her that okay in her head to say yes, I
22:17
Speaker 2: can do this rather than I think what would have
22:20
Speaker 2: happened historically is that they'd keep them at home waiting
22:23
Speaker 2: for ages.
22:23
Speaker 4: They wouldn't want to make it a point with.
22:25
Speaker 2: Their GP, because their GP has less of an idea
22:28
Speaker 2: about hirshprungs, and so they keep them at home until
22:31
Speaker 2: it's too late, and then they become on Well whereupon
22:33
Speaker 2: I think, because.
22:35
Speaker 4: We have given our families.
22:36
Speaker 2: So many ways to contact us, which I don't think
22:39
Speaker 2: is the norm, but so our families can get hold
22:42
Speaker 2: of us via WhatsApp, Facebook, messenger, email, phone, text, whatever
22:47
Speaker 2: sort of social media way that they want to use.
22:50
Speaker 2: I haven't quite stretched to Instagram yet, but it's yeah,
22:56
Speaker 2: there are so many ways that it's just easy. I mean,
22:59
Speaker 2: we have family who never have credit on their phone,
23:02
Speaker 2: can't access email. The only way they talk to us
23:04
Speaker 2: is via Facebook Messenger because un unfortunately, our trust is
23:09
Speaker 2: not always keen about that.
23:10
Speaker 4: But that's kind of it.
23:12
Speaker 2: If it means they contact me, they contact me, so yeah,
23:17
Speaker 2: it's it's easy for them to get hold of me.
23:20
Speaker 4: It's not a bother and they know that, so therefore
23:22
Speaker 4: they do it early.
23:24
Speaker 1: Right, That makes absolute sense, and I get the whole
23:29
Speaker 1: not being keened about the Facebook messer, the GDPR and
23:34
Speaker 1: what have you.
23:35
Speaker 2: We're constantly saying to people, you have to understand that
23:37
Speaker 2: I cannot ensure the security of these messages.
23:41
Speaker 4: So and then that's my kind of trust.
23:42
Speaker 2: Lets me get away with that, because it's then family's
23:45
Speaker 2: responsibility to accept that I have no way of securing
23:48
Speaker 2: these messages.
23:49
Speaker 1: But yeah, no, and it did quite rollic, actually, I
23:53
Speaker 1: Facebook Messenger, I think, so sorry about that.
23:55
Speaker 4: Yeah, no, it's fine, Fine, it's normal. I'm very used
23:59
Speaker 4: to it.
24:01
Speaker 1: But yeah, it's but that that's fantastic that there's that
24:05
Speaker 1: there's so many options because you know, sometimes especially with
24:10
Speaker 1: no necessary charities, but a lot of businesses, they have
24:13
Speaker 1: one phone number. Yeah, and you know you try and
24:16
Speaker 1: then you're on hold for however long. I mean, take
24:18
Speaker 1: take GP surgeries for example. You know, you have one
24:22
Speaker 1: phone number, you're on hold, you are your phone at
24:26
Speaker 1: whatever time they open, suddenly number forty five in the
24:28
Speaker 1: queue and it takes forever.
24:31
Speaker 2: Yeah, yeah, yeah, I mean our phone is basically surgically
24:35
Speaker 2: glued to one of the three of us every day
24:37
Speaker 2: one Monday is Friday. But yeah, it's it's uh, yeah,
24:41
Speaker 2: it's always there.
24:42
Speaker 1: So elastic and just a little bit more on the
24:46
Speaker 1: the group itself when in terms of what year was
24:50
Speaker 1: it was it formed?
24:52
Speaker 4: Oh, now you're asking a question, so hang on, let
24:58
Speaker 4: me think about this one.
25:00
Speaker 2: My patients are now about so it's probably about ten
25:02
Speaker 2: years ago.
25:03
Speaker 4: I think. I'm sure my parents will be shouting.
25:06
Speaker 2: And screaming now and go, no, it was earlier than that, Yeah,
25:09
Speaker 2: ten or eleven years ago, something on those lines.
25:12
Speaker 3: Fantastic and.
25:14
Speaker 1: Roughly sort of do people sort of come into the
25:18
Speaker 1: group and then leave it again or do they sort
25:19
Speaker 1: of come in.
25:20
Speaker 4: No, they tend to come in and just stay put.
25:22
Speaker 2: So essentially I work quite closely with so at Southampton
25:27
Speaker 2: we have neonatal surgical nurse specialists who are the people
25:31
Speaker 2: that are patients meet so they do the same thing
25:33
Speaker 2: as I do, but with our neonatal patients, which obviously
25:37
Speaker 2: when the majority of children with Hirshbrungs are diagnosed, they
25:42
Speaker 2: and essentially when they meet them and a child's diagnosed,
25:44
Speaker 2: it's one of the part of the conversations they have
25:46
Speaker 2: is that we have a support group for Hirshbrungs and
25:48
Speaker 2: this is how you get onto it, and we discuss
25:51
Speaker 2: it with them and they get added at kind of
25:53
Speaker 2: fairly early on. We then kind of introduce them to
25:57
Speaker 2: the group and say have a nosey when you're ready,
25:59
Speaker 2: introduce yourself and say roughly what area of the country
26:02
Speaker 2: or you're in, and then we tend to get people
26:05
Speaker 2: bombard them with hello, we're from here if you want
26:08
Speaker 2: to meet up at any point, so we I'm aware
26:13
Speaker 2: that through the group, through the charity, there are smaller
26:15
Speaker 2: little pockets of people that meet up separately and have
26:18
Speaker 2: coffee and catch up with each other when they've got
26:21
Speaker 2: children of similar ages. But generally our families, once they're
26:25
Speaker 2: in don't tend to leave. They just filter up through
26:27
Speaker 2: the system. So as I said, I have people that
26:31
Speaker 2: I've looked after when they were tiny that are now
26:33
Speaker 2: in their twenties that I no longer look after, but
26:37
Speaker 2: are still on the group and will contact me and go.
26:42
Speaker 4: How do why now I get some help?
26:44
Speaker 2: And you're like, so yeah, but it's yeah, it's a
26:48
Speaker 2: great group and they just like to support each other
26:52
Speaker 2: and help each other out, so it works really well.
26:54
Speaker 1: That's fantastic, And I think you make a really excellent
26:58
Speaker 1: point there because when people go up through hospital and there,
27:03
Speaker 1: you know, anything like me. You know, you're in and out,
27:06
Speaker 1: in and out, in and out every initially every what
27:09
Speaker 1: two three months, and then I think it became every
27:11
Speaker 1: six months or whatever, and then at sixteen stops.
27:17
Speaker 3: You know, at sixteen, I.
27:18
Speaker 4: Wish we stretched, ok to eighteen, but yeah.
27:21
Speaker 1: Right for me, For me, it was sixteen gosh, you
27:24
Speaker 1: know that was yeah, that was that. And and then
27:28
Speaker 1: it's like, I mean, yeah, fortunately enough, I was perfectly
27:33
Speaker 1: healthy enough, but it was like, right, sixteen stop. Yeah,
27:39
Speaker 1: I'm sure if you know, if there ever was ever
27:41
Speaker 1: an issue, I could have called gosh and whatever.
27:43
Speaker 3: But I think that's where the bridging of the gap
27:46
Speaker 3: really really helps in the in the support groups.
27:50
Speaker 2: Yeah, absolutely, and we are I mean, the new buzzword
27:54
Speaker 2: at the moment is transition and how you transition people
27:57
Speaker 2: into the adult world.
27:57
Speaker 4: The adult world is a big.
27:59
Speaker 2: And scary place in healthcare, and I think a lot
28:04
Speaker 2: of our families, more so in more complex complicated patients,
28:12
Speaker 2: really struggle when they get there.
28:14
Speaker 4: I mean, the advantage with Hirshbrung's.
28:16
Speaker 2: If you can call it, the advantages, but by the
28:18
Speaker 2: time you get to being an adult and you're kind
28:21
Speaker 2: of in that sixteen to eighteen category. You have kind
28:24
Speaker 2: of sussed your own body out and worked out what
28:27
Speaker 2: your triggers are and this sort of.
28:29
Speaker 4: Thing, and work out how to manage it and are
28:32
Speaker 4: more willing.
28:33
Speaker 2: So our difficulty with you five year olds is that
28:35
Speaker 2: they're not willing to sit on the toilet for ten
28:37
Speaker 2: minutes twice a day, or they're not willing to take
28:41
Speaker 2: the medicine that they've taken every night that takes our
28:43
Speaker 2: tree bark, and so this sort of thing, and it's
28:47
Speaker 2: a battle. Whereupon when you get to being an adult,
28:51
Speaker 2: you kind have got it. So most of our patients
28:55
Speaker 2: are very capable, and it's all about giving them the
28:58
Speaker 2: tools and the sort of understanding to know that if
29:03
Speaker 2: these symptoms are flagging, this is what they do about it.
29:06
Speaker 2: Some of our patients we are now beginning to transition
29:10
Speaker 2: and we've we've found a friendly adult surgeon who during
29:15
Speaker 2: her training, spent six months working with in pediatric surgery,
29:18
Speaker 2: so she's got an understanding of hirshprungs. She is now
29:23
Speaker 2: seeing them and kind of keeping them on the books
29:27
Speaker 2: so if there's a problem, they can contact her team
29:30
Speaker 2: and she will then see them. But so she sees
29:32
Speaker 2: them once well well a couple of times with us
29:34
Speaker 2: and then basically sees them once in adults on their own,
29:37
Speaker 2: and then puts them on a kind of patient initiated
29:40
Speaker 2: follow up so if there's a problem, they can call
29:42
Speaker 2: her team and they will get seen.
29:44
Speaker 4: So we're beginning to set in.
29:45
Speaker 2: Our area trying to develop in every area that manages
29:48
Speaker 2: children with Hirshbrungs is slowly looking at how to do
29:51
Speaker 2: that best because in adults it tends to be medics
29:54
Speaker 2: that look after them, not surgeons, because actually they don't
29:59
Speaker 2: need more surgery, just need gut management.
30:03
Speaker 4: And this sort of thing.
30:04
Speaker 2: But it is interesting in the fact that I will
30:06
Speaker 2: have teenage patients who's who has a parent that's got hirshbrungs,
30:10
Speaker 2: and they'll come into clinic and they'll all of a sudden go.
30:12
Speaker 4: Actually, would that work for me as well?
30:14
Speaker 2: And You're like, yeah, so you're so, we use kind
30:18
Speaker 2: of antibiotics for back to your and overgrace.
30:21
Speaker 4: And also these parents.
30:22
Speaker 2: Will go, oh, I wonder if that other work, and
30:24
Speaker 2: I was like, it's worth a try, So then they
30:27
Speaker 2: have to persuade their gp to do that.
30:29
Speaker 4: But yeah, so it is always an interesting one when
30:32
Speaker 4: you've got families with hirshbrungs parents.
30:35
Speaker 2: Going oh, they never did that for me, and you're like, okay,
30:38
Speaker 2: well yeah, but.
30:40
Speaker 3: It's back to what we said before about how.
30:44
Speaker 1: There are hospitals that do things slightly differently, and so
30:49
Speaker 1: you didn't want to sort of take people in the
30:51
Speaker 1: group from you know, London or Manchester or whatever, because
30:55
Speaker 1: it would possibly lead to a little bit of confusion.
30:58
Speaker 2: Yeah, we have an interesting situation the moment where a
31:01
Speaker 2: family We've got two daughters and currently they're being treated
31:06
Speaker 2: in two separate specialist centers because of geographics of where
31:11
Speaker 2: they lived at the time. So we're currently trying to
31:14
Speaker 2: sort out which child comes which way because mum is
31:17
Speaker 2: struggling having two teens telling their different things. So we
31:21
Speaker 2: are trying to sort out how best to manage that
31:25
Speaker 2: because there is now, as we've said, there is no
31:28
Speaker 2: kind of hard and fast correct way to treat hirshbruns.
31:31
Speaker 2: Because the bit about Hirshbrungs we don't understand is although
31:35
Speaker 2: you've removed the bit of bow, that is officially a GANGLIONI,
31:39
Speaker 2: so it's got the no nerve cells, the rest of
31:41
Speaker 2: the gut, which under microscope looks normal doesn't behave normally,
31:47
Speaker 2: and so there is no I think hard and faster
31:49
Speaker 2: all And you can line two people up that have
31:51
Speaker 2: exactly the same amount of Hirshbrungs that's been removed, and
31:55
Speaker 2: one of them will do absolutely fine, need no medication,
31:57
Speaker 2: no laxatives, no nothing, and you'll get another one that's
32:00
Speaker 2: gallons of laxatives or things to slow their gut down.
32:07
Speaker 4: Because they're just so different.
32:09
Speaker 3: That is true, That's very true.
32:10
Speaker 1: I mean, anybody who's who's listened to any of the
32:13
Speaker 1: episodes of these podcasts will know that I've interviewed a
32:18
Speaker 1: lot of people with short segment. With it being sort
32:20
Speaker 1: of the most common hirshbrums, it's naturally going to sign.
32:24
Speaker 3: More people with stigma.
32:26
Speaker 1: But I've I mean myself, I've had ten surgeries, but
32:29
Speaker 1: I've had people who've had maybe one or two, and
32:32
Speaker 1: I've had somebody whos had one hundred and forty nine. Yeah,
32:34
Speaker 1: so it does completely differ. So I think you're absolutely
32:39
Speaker 1: right in that sense.
32:42
Speaker 4: Yeah, and I think it.
32:44
Speaker 2: And the problem is with Hirschbrums, if there was a
32:48
Speaker 2: hard or fast correct way, you wouldn't have three different
32:51
Speaker 2: types of surgery to fix it. So there are three
32:53
Speaker 2: common different types of surgery that we do when that
32:58
Speaker 2: what the surgeons do when they remove the bit of
32:59
Speaker 2: bad If there was one perfect way of doing it,
33:02
Speaker 2: the other two would fall by the wayside. But you
33:05
Speaker 2: could line twelve and it regularly happens at our meetings.
33:08
Speaker 2: You could line twelve k director surgeons up pediatric surgeons
33:11
Speaker 2: and they would basically a third of them would do
33:14
Speaker 2: each of the types of the operations because it's what
33:17
Speaker 2: they prefer to do, because there's no best operation, no.
33:24
Speaker 1: So with the three different types of surgery, obviously people
33:26
Speaker 1: listening to this may have had, well, we'll have certainly
33:29
Speaker 1: had one of these three tops yepes. Would you like
33:32
Speaker 1: to just explain a little bit about what the three
33:34
Speaker 1: different types are.
33:36
Speaker 2: Yeah, So essentially there are three that were all developed
33:39
Speaker 2: by different surgeons a long time ago.
33:41
Speaker 4: So there's the dew Hammill, the Swinson, and the Suave
33:45
Speaker 4: for a long time.
33:46
Speaker 2: I think the dew Hammill was one that was done most.
33:52
Speaker 2: I find it the hardest in some ways to explain.
33:56
Speaker 2: But essentially, having removed the segment of bow that has
34:02
Speaker 2: no ganglion cells, they leave quite a longer four or
34:06
Speaker 2: five centimeter bit of boo that does have no.
34:09
Speaker 4: Gangling cells on.
34:10
Speaker 2: But when they pull through the healthy bow, so you
34:13
Speaker 2: have to wave my hands around to kind of describe
34:14
Speaker 2: it what I'm doing.
34:15
Speaker 4: They pull the.
34:17
Speaker 2: Healthy section of bow down behind it and then connects
34:22
Speaker 2: them internally and kind of create almost like a bit
34:25
Speaker 2: of a pouch. So the front of that's got no
34:28
Speaker 2: gangling cells, but the back of it does, so that
34:31
Speaker 2: essentially it allows people to squeeze.
34:33
Speaker 4: Out the pool and detect where there's poo there.
34:35
Speaker 2: But because they've lost some of their large bow, it
34:38
Speaker 2: helps store it because when we remove the Hirschbrungs bow,
34:41
Speaker 2: you lose kind of the rector, which is your storage,
34:44
Speaker 2: which is where you store poo so that you.
34:46
Speaker 4: Can not go to the toilet all the time.
34:49
Speaker 2: So the dew hammels basically yeah, creates this sort of pouch,
34:54
Speaker 2: but it tends to lead to people being go less frequently.
34:58
Speaker 2: They more on the side of constipation. You don't have
35:02
Speaker 2: what's called the Swanson.
35:04
Speaker 4: Which is.
35:06
Speaker 2: I think the easiest, which is where they basically go
35:09
Speaker 2: in and they do this generally through the bottom.
35:13
Speaker 4: They will remove all.
35:15
Speaker 2: Of the a ganglionic bough bar about the last centimeter
35:20
Speaker 2: because if you remove that bit, you lose your sphincters,
35:23
Speaker 2: so you have to have those so you can have control.
35:25
Speaker 2: And then they basically bring the new healthy bow down
35:29
Speaker 2: with nerves and plummet on top, so it's just literally
35:31
Speaker 2: plum the two of them together. The risks with that
35:36
Speaker 2: one is is that if you cut too low and
35:39
Speaker 2: remove too much of the boand don't need enough excuse me, they.
35:46
Speaker 4: You can damage the sphincters and your.
35:48
Speaker 2: Ability to tell the difference between liquid gas and solid
35:54
Speaker 2: So there's there's kind of that risk.
35:56
Speaker 4: The third type is again slightly implicated.
36:01
Speaker 2: Essentially, you have a segment of a gangon bow a
36:05
Speaker 2: gangling bell where they have the muscle which is on
36:08
Speaker 2: the outside of the luminar bowl, and they remove the
36:12
Speaker 2: kind of the new coza the inner lining of the
36:15
Speaker 2: bow and pull the healthy bow down through their center
36:19
Speaker 2: of that cuff of muscle.
36:21
Speaker 4: So again you've got a kind of a cuff on the.
36:23
Speaker 2: Outside of the healthy bow which acts as a bit
36:26
Speaker 2: of a break so to slow the stool down. And
36:30
Speaker 2: then you've got ganglionic bowl in the middle that can
36:33
Speaker 2: squeeze to help push poo out. The side effect of
36:37
Speaker 2: that one is the fact that you've got a cuff
36:39
Speaker 2: of muscle that can roll down a bit like a
36:41
Speaker 2: roll of a sock if you roll a sock down
36:43
Speaker 2: your ankle, and that kind of cuff can then act
36:47
Speaker 2: as a bit of a tightening and a kind of
36:49
Speaker 2: a narrow point which prevents people from being able to
36:52
Speaker 2: pooh properly, and they can leak. So they all have
36:56
Speaker 2: their problems, and therefore no one is the per operation.
37:01
Speaker 2: So every surgeon that will choose which one they want
37:03
Speaker 2: to do will go with the reason I do this
37:05
Speaker 2: is because of X, and they will list the benefits.
37:10
Speaker 2: Those of us that are nurses that look after the
37:12
Speaker 2: kids go, It doesn't really matter what surgery we do.
37:14
Speaker 2: It's the kind of the care afterwards and the nursing
37:17
Speaker 2: looking after them and how that's managed that actually makes
37:20
Speaker 2: their outcomes better. The surgeons are beginning to accept that
37:23
Speaker 2: is the truth. But yeah, for a long time it
37:27
Speaker 2: was all about surgery.
37:28
Speaker 1: Yeah, yeah, And I guess from some surgeons I've spoken
37:33
Speaker 1: to it it tends to depend on what they are
37:38
Speaker 1: more comfortable doing.
37:39
Speaker 4: Absolutely, yeah, I don't.
37:40
Speaker 1: Know whether you found that in the same as me.
37:43
Speaker 1: Whether surgeons have a preferred method, so comes them with Hirshbruns,
37:48
Speaker 1: they will do the yeah whatever.
37:50
Speaker 2: Absolutely absolutely so yeah. So when I started are two surgeons.
37:57
Speaker 4: That did Hirshbruns.
37:58
Speaker 2: Both did you hammerles because that's what they did, that's
38:00
Speaker 2: what they've been trained to do. So our newer consultants
38:04
Speaker 2: that we have now that I say, they're new to me,
38:06
Speaker 2: but they've been around for about ten or eleven years plus.
38:09
Speaker 4: Now longer than that. Longer than that.
38:11
Speaker 2: They would have trained doing the new Hammel, but have
38:15
Speaker 2: decided they want to learn to do the other versions
38:19
Speaker 2: and have got kind of so.
38:22
Speaker 4: They've shared.
38:23
Speaker 2: So they've asked surgeons that have trained in America who
38:26
Speaker 2: have done the Swanson save to come over and who've
38:29
Speaker 2: done some time there during their training. They've come down
38:31
Speaker 2: and helped train, so they've learned from other surgeons, not
38:35
Speaker 2: from our center. So they've come down and they've done
38:37
Speaker 2: it together. And then whenever we do a pull through,
38:40
Speaker 2: there is generally at least two consultant surgeons in the
38:42
Speaker 2: theater at the same time because they need that experience.
38:45
Speaker 4: Because of the.
38:47
Speaker 2: Infrequency the rarity of Hirshbrun's you want two experts doing it,
38:53
Speaker 2: not two junior people. So and that's certainly the way
38:57
Speaker 2: our surgeons keep their experience in their hand in is
38:59
Speaker 2: because they do it together and they do it sort
39:03
Speaker 2: of thing. So each of the surgeries had done with
39:04
Speaker 2: a couple of consultants.
39:06
Speaker 1: Yeah, that makes absolute sense because it is as you said,
39:09
Speaker 1: it is very rare, and it's mentioned several times on
39:13
Speaker 1: the show One in five thousand.
39:14
Speaker 3: You know, it's not a surgery you'll be doing every day.
39:18
Speaker 4: Yeah, yeah, I mean I think so.
39:21
Speaker 2: I mean we, as I say in Southampton, we cover
39:23
Speaker 2: the whole of the kind of south central of the country,
39:26
Speaker 2: so kind of South London and not Southampton, but below London,
39:30
Speaker 2: across to kind of Dorset and to West Sussex and
39:32
Speaker 2: obviously into the Channel Liland.
39:33
Speaker 4: So we've got a lot of a lot of children
39:36
Speaker 4: in that career.
39:36
Speaker 2: I don't know the full demographics, but essentially we will
39:39
Speaker 2: get anywhere between eight and entielve patients with hirshbrongsy year
39:43
Speaker 2: that we manage roughly in our area. And that's similar
39:45
Speaker 2: to a lot of the centers. So that's kind of
39:49
Speaker 2: a sort of a standard sort of number that you
39:50
Speaker 2: would get. So although I call myself a specialist of well,
39:54
Speaker 2: I don't call myself a specialist, but I am children
40:02
Speaker 2: under eighteen. I've got about one hundred, one hundred and
40:04
Speaker 2: twenty children that I currently look after that are kind
40:07
Speaker 2: of from birth to eighteen, because that's roughly the number
40:11
Speaker 2: that kind of as they grow up, and the obviously
40:13
Speaker 2: drop off at the top end as we get more
40:15
Speaker 2: in at the bottom end, and we will.
40:16
Speaker 4: Have years where we have less.
40:18
Speaker 2: So this year, bizarrely, we've only had about four children
40:21
Speaker 2: this year so far, whereupon I think the year before
40:24
Speaker 2: and before.
40:25
Speaker 4: That we had twelve.
40:27
Speaker 2: So it's it's difficult, it's different from different times.
40:31
Speaker 1: So yeah, absolutely, no, that's fantastic, and that is very
40:37
Speaker 1: much in terms of the numbers that I've heard from
40:39
Speaker 1: other hospitals as well.
40:40
Speaker 3: That's sort of twelve to fourteen.
40:43
Speaker 4: Yeah, one a month essentially roughly.
40:46
Speaker 2: Yeah, yeah, yeah, coming clusters. It's like buses.
40:50
Speaker 1: Well, yeah, it's yeah, we've been talking before about genetics. Yeah,
40:55
Speaker 1: twins that are born potentially yeah, one with Hirschbruns.
41:00
Speaker 3: Yeah, yeah, very very much like London buses. Just as
41:06
Speaker 3: we as we sort of.
41:07
Speaker 1: Circle round to the end and bring it back to
41:11
Speaker 1: the charity itself. You've mentioned a lot of things about
41:16
Speaker 1: organizing trips and how people support, et cetera. Just where
41:25
Speaker 1: would you like to see the charity head towards? Obviously
41:29
Speaker 1: COVID has been you know, very very difficult time for
41:33
Speaker 1: every organization and especially charities being heart hit.
41:38
Speaker 3: But where would you like to see a what direction
41:41
Speaker 3: would I see it go?
41:42
Speaker 2: I mean, essentially, what we what we want or what
41:44
Speaker 2: I would love is to be able to say that
41:47
Speaker 2: we have two events a year that we meet up
41:49
Speaker 2: that we provide grants, So we give grants to family
41:52
Speaker 2: to support transport to and from the hospital if they're
41:54
Speaker 2: having multiple appointments, and just that that's it really essentially
41:59
Speaker 2: kind of of making connections between families who have hirshbrungs
42:04
Speaker 2: and so yeah, either face to face or kind of
42:07
Speaker 2: and just encouraging patients to meet with other people and
42:12
Speaker 2: just really getting out into the kind of communities around
42:16
Speaker 2: these people a bit more about what Hirshbrungs is and
42:19
Speaker 2: the fact that not every child that goes to school
42:22
Speaker 2: will be toilet trained because of a condition that no
42:26
Speaker 2: one can see or ever hear, has ever heard about,
42:29
Speaker 2: and that kind of constant trying to have to explain
42:32
Speaker 2: to people that the child that's in your class as
42:36
Speaker 2: a teacher that's constantly having to ask go to the
42:38
Speaker 2: loo is not because they're misbehaving, it's because they've had
42:42
Speaker 2: half their colon chopped out and actually they have to
42:45
Speaker 2: go eight times a day and that's their norm.
42:50
Speaker 4: So it's kind of trying to explain that it's one.
42:53
Speaker 2: Of those it's a buzzwords, isn't it? Hidden disability? But
42:57
Speaker 2: it's trying to kind of get that out there that, yeah,
43:02
Speaker 2: this is not a condition that everyone's heard of.
43:05
Speaker 1: So yeah, absolutely, yeah, I think we're very much aligned
43:09
Speaker 1: on that, very much aligned on getting getting info out there. Yes, yeah,
43:14
Speaker 1: I think is so so educating. I think that's really
43:19
Speaker 1: really important. And just very lastly, where can people find
43:25
Speaker 1: the charity or donate if they want to?
43:27
Speaker 2: So the best way now is probably through Facebook. So
43:31
Speaker 2: there is the charity page, which is Hirshbrung's family connection
43:34
Speaker 2: to charity. There is a QR code on that page
43:37
Speaker 2: that means you can scan and donate through PayPal.
43:42
Speaker 4: To the bank account. And I mean we.
43:45
Speaker 2: Have historically had a website, but unfortunately that's a capacity
43:49
Speaker 2: level I do not have to continue. But certainly, yeah,
43:53
Speaker 2: the information will be via Facebook on the charity page.
43:57
Speaker 1: Brilliant, fantastic, Well can thank you so much for joining me,
44:01
Speaker 1: and also thank you so much.
44:03
Speaker 3: For all of the work that you do for people
44:06
Speaker 3: with Hirshbrungs.
44:07
Speaker 1: All right, thank you, valuable, so thank you so much,
44:10
Speaker 1: no problem. Thank you for listening to the podcast. Find
44:18
Speaker 1: us on Instagram Tom's Underscore Hirshbrung's Underscore Podcast. Listen to
44:23
Speaker 1: previous episodes on Spotify by searching Tom's Hirshbrung's Podcast