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Alder Hey Parent Support Group Explanation · Tom's Hirschsprung's Podcast

0:02
Speaker 1: You are listening to Tom's Hirshprung's Podcast, a space where
0:05
Speaker 1: we talk openly about living with Hirshprung's disease. Whether you
0:09
Speaker 1: live with it, care for someone who has it, or
0:12
Speaker 1: just want to understand more, this podcast is for you.
0:15
Speaker 1: Each episode we will explore real stories and honest conversations
0:19
Speaker 1: about a condition that often goes unheard. Thank you for
0:22
Speaker 1: tuning in. Hello, and welcome to a special episode of
0:49
Speaker 1: the podcast where we are going to talk about something
0:53
Speaker 1: that will be happening, hopefully imminently in a few months
0:56
Speaker 1: or so. Is the older Hay Hirshbrung's parent support and
1:03
Speaker 1: so we're going to talk a little bit about what
1:04
Speaker 1: it is, how it all came to be, where it
1:08
Speaker 1: all started, and what we hope for it for the future.
1:13
Speaker 1: So I am joined by Faye and l Welcome, Hello, Hello,
1:19
Speaker 1: Thanks for coming along. Now, this is something that we've
1:22
Speaker 1: been chatting about for god it seems most of our lives,
1:26
Speaker 1: but I think it's actually only been it's only been
1:28
Speaker 1: about a year or so, so it has taken quite
1:32
Speaker 1: a long time to get to the stage we're at
1:35
Speaker 1: at the moment. Lots of meetings, lots of discussions, lots
1:39
Speaker 1: of things that you have to put in place. You
1:41
Speaker 1: can't just you can't just put things together overnight and
1:44
Speaker 1: then it works. But the basic idea behind this is
1:49
Speaker 1: that it's done in conjunction with alder Hate, so they're
1:52
Speaker 1: very much supporting us with this. And the idea is
1:59
Speaker 1: to have a Hirshprung's Parents support group as the name suggests,
2:05
Speaker 1: but is to link parents who have or people with
2:10
Speaker 1: hirshprung's or parents who have children with hirshprungs, two other
2:16
Speaker 1: parents who have a child born with hirshprungs who are
2:20
Speaker 1: going through those first few days, weeks, months of having
2:26
Speaker 1: a child with hirshprungs. And as parents with children with
2:30
Speaker 1: hirshprongs know, that can be a very challenging time. You've
2:33
Speaker 1: got surgery, you've got all sorts, but also it can
2:37
Speaker 1: be quite an unknowing time because as we know, hirshbrngs
2:42
Speaker 1: is a very rare condition we can have. You know,
2:46
Speaker 1: certainly in my case as well I know in your
2:48
Speaker 1: cases that someone we didn't have the hirshprungs in our family,
2:53
Speaker 1: and our parents had no idea what hirshprungs was so
2:56
Speaker 1: to have someone there who can not give medical advice
3:01
Speaker 1: as very very important to say, but to be there
3:05
Speaker 1: to support with questions with the you know what our washouts,
3:10
Speaker 1: what are stonmas, etc. I think would be invaluable. And
3:15
Speaker 1: we have at the moment forty seven people who have
3:18
Speaker 1: signed up to that both I think six in person
3:23
Speaker 1: and the rest are forty one if my mass is correct.
3:28
Speaker 1: Forty one people sign up virtual so for from all
3:31
Speaker 1: around the world. So that is a fantastic response, and
3:34
Speaker 1: thank you everybody who has done that so far, and
3:37
Speaker 1: we will aim to obviously use as many people as
3:40
Speaker 1: possible as we go forth. So again it's it's a
3:44
Speaker 1: parent led support group providing help for parents who have
3:49
Speaker 1: just had a child diagnosed with hirshbrungs L. Would you
3:54
Speaker 1: like to talk a little bit about kind of the
3:56
Speaker 1: origins and how we how we got to where we are?
4:00
Speaker 2: Yeah, definitely, So was it a year ago now? I
4:06
Speaker 2: can't remember.
4:07
Speaker 1: Yeah, it feels like a lifetime, but yeah.
4:09
Speaker 2: Round about then. I met Tom in person at the
4:12
Speaker 2: Older Hay conference. Also met Faye, but I don't think
4:15
Speaker 2: we got to chat too much. But I do remember
4:17
Speaker 2: chatting to Tom about this on the day, And it's
4:21
Speaker 2: kind of something that I was just originally really interested
4:28
Speaker 2: in seeing if it was possible, because kind of when
4:32
Speaker 2: I joined the Hirshbrungs support groups, I was getting a
4:35
Speaker 2: lot of messages through from parents with questions. And they're
4:39
Speaker 2: not just kind of more logistical questions like what does
4:44
Speaker 2: this mean? Or what kind of surgery does this mean?
4:46
Speaker 2: Like medical questions, which again can't give medical advice but
4:49
Speaker 2: can provide like lived experience things. It's also things like
4:53
Speaker 2: what does starting school look like? What kind of adjustments
4:57
Speaker 2: did you have when you on a school trip? Or
5:01
Speaker 2: like even just things like were you able to go
5:03
Speaker 2: hon a sleepover? How did that even work? Things like that,
5:06
Speaker 2: And I think obviously in these scenarios it's very likely
5:11
Speaker 2: to be like parents and families and guardians that are
5:14
Speaker 2: like in early stages. But I still think there's real
5:18
Speaker 2: value and merit in having someone who's kind of been
5:22
Speaker 2: living with the condition, or like family who've been living
5:25
Speaker 2: with the condition in their family for a long time
5:27
Speaker 2: and seeing how basically they've gone on to live and
5:31
Speaker 2: have loads of experiences and do loads of things. And
5:35
Speaker 2: there's like a lot of hope in that. And I
5:37
Speaker 2: know that if my parents had had that been able
5:40
Speaker 2: to access that when I was younger, I think that
5:43
Speaker 2: would have been really helpful because I think obviously there's
5:45
Speaker 2: a lot of confusion during that time. I've never experienced
5:48
Speaker 2: it myself. Obviously I was simply a baby. I wasn't
5:50
Speaker 2: experiencing those things like my parents did. But from what
5:53
Speaker 2: I've heard from their perspective, it can be really scary.
5:56
Speaker 2: But also you can't like picture how things will look
5:59
Speaker 2: because things just so so much and there's so much
6:03
Speaker 2: going on. So I think it can be really nice
6:04
Speaker 2: to have someone who's gone through similar experiences and can
6:09
Speaker 2: just kind of relate to the parents or the guardians
6:15
Speaker 2: in what they're going through. So that was kind of
6:17
Speaker 2: the aim of it. And it's really cool to be
6:19
Speaker 2: working with Old Hay obviously because they and myself grew
6:24
Speaker 2: up with Older Hair Support. You you know, we've lived
6:28
Speaker 2: in the area and we have a lot of connections
6:30
Speaker 2: there people that work there, So it's really cool to
6:32
Speaker 2: like be giving back a guess to the community in
6:36
Speaker 2: that way.
6:38
Speaker 1: Yeah, for sure, for sure. And I think Older Hay,
6:41
Speaker 1: I mean, it's a specialist center, I guess for people
6:47
Speaker 1: with Hirshprung's. I mean, there's so many people from the
6:50
Speaker 1: Manchester area and even further north than that who travel
6:56
Speaker 1: down to Older Hay because because they know so much
6:58
Speaker 1: about so much, so it's it's really great to have
7:02
Speaker 1: to have them on board. And I think that's the
7:04
Speaker 1: other thing that a lot of people have spoken to
7:06
Speaker 1: have really liked the fact that you know, obviously this
7:09
Speaker 1: is not just going to be just us, but it
7:11
Speaker 1: is going to be Older Hay and they are They've
7:15
Speaker 1: been brilliant so far, so it's it's really good to
7:18
Speaker 1: have their expertise because again, none of us are our parents,
7:24
Speaker 1: so it's all kind of very kind of new new
7:27
Speaker 1: to us as well, so it's great to have to
7:30
Speaker 1: have their support. So in terms of because this has
7:35
Speaker 1: been the real sticking point for the last god knows
7:38
Speaker 1: how long in how this will actually function and how
7:41
Speaker 1: it will actually work, so by myself, well both us
7:48
Speaker 1: and Older Hay have come up with a flow chart
7:52
Speaker 1: and a sort of step by step in terms of
7:55
Speaker 1: how this is actually going to function because the idea. Again,
7:58
Speaker 1: ideas are great and fantastic, but they also need things
8:03
Speaker 1: behind them, and that's what's taken a long long time,
8:06
Speaker 1: because the important thing I think for us and for
8:09
Speaker 1: everybody is that we get this right, and we get
8:13
Speaker 1: it as one hundred percent right as we can. There
8:15
Speaker 1: will be things that probably crop up that we need
8:17
Speaker 1: to change a little bit, and there'll be things that
8:19
Speaker 1: we actually don't know until we start. But in order
8:24
Speaker 1: for this to start properly, it needs to be you know,
8:27
Speaker 1: it can't just be on a wing of the prayer.
8:29
Speaker 1: It has to be like properly, properly done and GDPR
8:32
Speaker 1: and safeguarding and all of that stuff. So in terms
8:35
Speaker 1: of how it's going to work, so be a baby
8:37
Speaker 1: born with hrsprungs. There will then be a poster that
8:42
Speaker 1: you're making at the moment that will have a QR
8:45
Speaker 1: code on, so we won't necessarily come to you. It
8:47
Speaker 1: will be a poster that you can then scan a
8:50
Speaker 1: QR code you can, and then that will come sort
8:54
Speaker 1: of to us, and then we will the pair and
8:58
Speaker 1: then ask for virtual or in person support. So the
9:02
Speaker 1: virtual and in person so I know you're going to
9:07
Speaker 1: be on more on the in person side. Do you
9:10
Speaker 1: want to talk a little bit more about that.
9:14
Speaker 3: Yeah, So obviously I was as a child basically lived
9:18
Speaker 3: my whole child in Older Hay, so it's not too
9:20
Speaker 3: far from me and I'm always in Liverpool anyway. So
9:24
Speaker 3: the in person again, the referral come through via that
9:28
Speaker 3: QR code and there will be a matching process between
9:34
Speaker 3: the two families almost on a peer to peer support really,
9:37
Speaker 3: and then once we have received that referral match and
9:40
Speaker 3: process of being complete by myself Tom and now we
9:45
Speaker 3: will pass on details from a from a peer to
9:48
Speaker 3: peer perspective, and then it's up to the volunteer to
9:52
Speaker 3: make arrangements and go and see the patient or the
9:56
Speaker 3: parent of the patient in Older Hay themselves, whether that's
10:01
Speaker 3: go for a coffee or actually go on the ward
10:03
Speaker 3: and just a bit of other emotional support, a bit
10:05
Speaker 3: off a validation and some advice and guidance without any
10:12
Speaker 3: medical knowledge and I can't stress that enough, no medical
10:18
Speaker 3: knowledge whatsoever. Please, just to keep everybody safe, that's you know,
10:23
Speaker 3: we can't do this without keeping everyone safe really, So yeah,
10:27
Speaker 3: it's an exciting time. Old Hey are very much on board,
10:30
Speaker 3: are very supportive of the process. Yeah, it's all.
10:35
Speaker 1: Busted definitely, and I think that that medical knowledge part
10:40
Speaker 1: is really important and I think it's for the safety
10:42
Speaker 1: of everyone really, because again I'm sure we've seen Facebook
10:46
Speaker 1: groups loads of times where people are saying, oh, I
10:49
Speaker 1: took this supplement, I tried this cream, I did that.
10:53
Speaker 1: And the last thing, the absolute last thing we want
10:57
Speaker 1: is for someone to suggest, oh I took this or
11:00
Speaker 1: I did this, and then their child developed some sort
11:04
Speaker 1: of rash or whatever and they go, well, you told
11:06
Speaker 1: me this, and I just it just really really muddies
11:09
Speaker 1: the water. So yeah, it will be sort of experiences
11:14
Speaker 1: much rather than the medical side. And then I guess
11:17
Speaker 1: the other part, the virtual side, possibly yeah, a little
11:22
Speaker 1: bit easier, but you've I've had several people from lost
11:27
Speaker 1: different countries who've come forth and said, I, you know,
11:29
Speaker 1: I really want to offer virtual support. And again it'll
11:32
Speaker 1: be up to the pair of what they want and
11:35
Speaker 1: whether they want virtual or whether they want in person.
11:38
Speaker 1: But just in terms of virtual, how do you see
11:41
Speaker 1: that kind of process working?
11:45
Speaker 3: So yeah, so virtually it can be. And what tappen
11:48
Speaker 3: is a good app to use, and it's free. Everybody's
11:53
Speaker 3: on WhatsApp. Again, it's swapping those numbers, and those that
11:57
Speaker 3: don't want to swap the numbers, it's it's Zoom or
12:00
Speaker 3: Microsoft Teams and that can be shared via emails. Some
12:04
Speaker 3: people prefer that and again, you know, it's offering the
12:08
Speaker 3: emotional support, that validation to parents who are you know,
12:14
Speaker 3: their worlds have just been turned upside down and then
12:16
Speaker 3: you know they're feeding literally in a bit of a
12:18
Speaker 3: battlefield with this new condition and their little baby just
12:24
Speaker 3: being born, and you know, there are lots of theories around.
12:29
Speaker 3: You think you're going to one country and you end
12:31
Speaker 3: up in another country, and actually it's how you adapt
12:35
Speaker 3: and how you manage and how you cope with all
12:37
Speaker 3: of that distress and that change that you weren't expecting.
12:41
Speaker 3: So for us, it's about supporting those parents who have
12:44
Speaker 3: landed in a different country and following their pathway through
12:49
Speaker 3: the journey of Hirshbrun's.
12:52
Speaker 1: Yeah, definitely, definitely, and that virtual support because of obviously
12:56
Speaker 1: not everybody can make it to Older Hay, but they
12:58
Speaker 1: still want to help, which is fantastic. So we've got
13:02
Speaker 1: several people who you know are maybe like London based
13:05
Speaker 1: or further south or further north and they can't get
13:08
Speaker 1: toward Hay, which is fine, but they still want to
13:11
Speaker 1: offer that virtual support. So, like you said, the sort
13:14
Speaker 1: of through zoom through teams. And again this the whole
13:19
Speaker 1: volunteer support. Again, you don't there isn't necessarily a strict
13:27
Speaker 1: time commitment either, So it could be like just a
13:29
Speaker 1: weekly catch up and this, and it could it could
13:31
Speaker 1: just be one catch up. It could be someone who
13:33
Speaker 1: doesn't know a great deal about it, they just want
13:35
Speaker 1: to know bits and pieces, and then that's the one
13:38
Speaker 1: catch up and it's fine. You know, it isn't going
13:40
Speaker 1: to necessarily be you know, every Wednesday that you have
13:43
Speaker 1: to be on teams or whatever. This is going to
13:46
Speaker 1: be very much individual and very much down to the
13:51
Speaker 1: volunteer and the parent themselves. So I guess from from
13:59
Speaker 1: there then it's kind of up to down to us.
14:02
Speaker 1: We contact the person that we think would be best.
14:05
Speaker 1: And again because we've got people, lots of volunteers with
14:09
Speaker 1: different types of hirshprungs as well. So if you maybe
14:13
Speaker 1: get somebody who's long segment or short segment or whatever,
14:16
Speaker 1: we might think, actually, this parent would be better to
14:18
Speaker 1: talk because they have a child with this condition or
14:21
Speaker 1: they have that condition themselves, which I think has been
14:25
Speaker 1: really handing us really good that we've got forty seven people,
14:28
Speaker 1: because we've got lots of different experiences, lots of different
14:33
Speaker 1: types of hirshbrungs as well, which I think will be
14:35
Speaker 1: really really valuable. So we'll then do the intro volunteer
14:39
Speaker 1: to parents, so will essentially be the go between. The
14:43
Speaker 1: volunteer support, like I just said, will vary from in
14:47
Speaker 1: terms of length, and then what we will also do
14:52
Speaker 1: is we will keep checking in making sure that everything's fine,
14:55
Speaker 1: because I think, like you've mentioned before, Fade, that it
14:58
Speaker 1: doesn't necessarily if you feel that when you're the volunteer,
15:05
Speaker 1: or if you're the person who's being helped that it's
15:08
Speaker 1: not working, or you don't feel that the info that
15:13
Speaker 1: you're getting is what you want at that time, we
15:19
Speaker 1: can also switch I guess as well.
15:22
Speaker 3: Yeah, absolutely so from our perspective, it's about keeping everybody safe.
15:27
Speaker 3: And what we mean by that is the volunteers are safe,
15:30
Speaker 3: they're attending alder Hey, they're in a safe arena to
15:34
Speaker 3: share their experiences of hosh runs, but also in a
15:37
Speaker 3: safe place to be able to support the parents who
15:41
Speaker 3: you know, as I said previously, the wills just ended
15:44
Speaker 3: really at that time, So it's the support and the
15:49
Speaker 3: respect on both sides. What we want is the volunteers.
15:52
Speaker 3: If they're not happy about anything literally anything is to
15:57
Speaker 3: come towards we can re evaluate, we can review and
16:01
Speaker 3: sometimes you know, for us to offer support to the
16:03
Speaker 3: volunteers because they're taking on other people's distress and so
16:09
Speaker 3: actually we need to look after everybody involved, you know,
16:13
Speaker 3: for the support to work really and equally for the volunteers.
16:16
Speaker 3: If they're not getting the support that they feel they
16:19
Speaker 3: need or meet their needs, then absolutely can get back
16:22
Speaker 3: in touch. We can have a look at matching or
16:25
Speaker 3: actually they can speak to one of us and we
16:28
Speaker 3: can offer the parents that emotional support they need really
16:32
Speaker 3: to get through it's difficult time. So yeah, there's there's options.
16:37
Speaker 1: Yeah, no, that's brilliant. No, it's fantastic. And and again
16:41
Speaker 1: I guess just finally in terms of an actual start day,
16:44
Speaker 1: we will we will have that hopefully shortly. That that's
16:48
Speaker 1: not necessarily down to us, So that's that's more on
16:51
Speaker 1: all the house side, so we will when we get
16:54
Speaker 1: their go ahead from us. It's not us sort of
16:56
Speaker 1: sitting here not doing anything. We need to go ahead first,
16:59
Speaker 1: so we're we get that go ahead, then hopefully we
17:01
Speaker 1: will be starting you know, very very shortly, which would
17:05
Speaker 1: be great. And I guess just finally for both of you,
17:12
Speaker 1: what are you sort of most looking forward to about
17:16
Speaker 1: this whole experience or this whole process or do you
17:21
Speaker 1: kind of look forward to that you hope that it
17:25
Speaker 1: will will provide. I'll start with you, L.
17:29
Speaker 3: I think it's just.
17:31
Speaker 2: As I kind of said before, like the opportunity to
17:34
Speaker 2: give back to the community and like facilitate something, because
17:39
Speaker 2: I think a lot of these things, as you say,
17:42
Speaker 2: exist on Facebook groups, and until that older hair conference,
17:48
Speaker 2: I've literally never met anyone else with hirshbruns. Like that
17:51
Speaker 2: was the first time ever in my life meeting in
17:53
Speaker 2: person apart from literally just you know, messaging on Facebook,
17:56
Speaker 2: like in comments on Hushpringg's forums. So I think the
17:59
Speaker 2: idea of being involved in facilitating like those in person
18:03
Speaker 2: or you know, virtual, but like actual connections where you
18:06
Speaker 2: feel like if someone asks you, does do you know
18:09
Speaker 2: anyone with the same condition as you? Or do you
18:12
Speaker 2: know anyone that has your child's condition? And you can like, yeah,
18:15
Speaker 2: I do, and you could be like I know this
18:16
Speaker 2: person that I've connected with, and it's like an actual,
18:18
Speaker 2: real connection. Not that the Facebook comments aren't real connections,
18:22
Speaker 2: they're often you know, useful, but I think it's just
18:25
Speaker 2: a really nice way of like bringing people together and
18:29
Speaker 2: providing that support, as Fay says, at a really difficult time.
18:32
Speaker 2: And hopefully those kind of connections will you know, naturally
18:36
Speaker 2: carry on, Like obviously the volunteers need to have really
18:40
Speaker 2: set boundaries, but hopefully those like connections will be really
18:43
Speaker 2: useful like throughout life and like just kind of yeah,
18:48
Speaker 2: growing that those relationships in the community thing.
18:52
Speaker 1: Definitely, and same question to you.
18:56
Speaker 3: Yeah, absolutely, and just on the back of what else said, really,
18:59
Speaker 3: I think all organically and naturally will create relationships and
19:02
Speaker 3: bonds for the children as well of all ages. So
19:07
Speaker 3: although we're very much thinking the support will come from
19:11
Speaker 3: volunteers for parents who are currently in old Hay just
19:15
Speaker 3: had that bombshell dropped on them for their newborn baby,
19:18
Speaker 3: but actually it could you know, it's the child's lifetime,
19:23
Speaker 3: the struggles of education and holidays, day to day life
19:28
Speaker 3: struggles with hirshpruings really and also the positives. You know,
19:33
Speaker 3: children with hushprings are resilient and strong as we know,
19:39
Speaker 3: and you know that goes for the whole of their lifetime.
19:43
Speaker 3: So that support is ongoing and I think it will
19:45
Speaker 3: create natural and organic relationships not only for parents and
19:50
Speaker 3: friendships that really flourish, but also for children on a
19:54
Speaker 3: peer to pierce support as well. Yeah, I'm excited and
19:59
Speaker 3: I'm really looking forward to seeing some really positive outcomes
20:03
Speaker 3: from less.
20:04
Speaker 1: Yeah. Absolutely, No, I think we're all we're all echo
20:07
Speaker 1: those sentiments and we're all very very excited for what
20:11
Speaker 1: this can be, which will be fantastic. But no, thank
20:14
Speaker 1: you so much for you for join me, for helping
20:17
Speaker 1: with all of this as well. And yes, we'll we'll
20:20
Speaker 1: definitely possibly do another one at some point and catch
20:26
Speaker 1: up with everyone. But no, thank you very much, Thank you,
20:33
Speaker 1: Thank you for listening and being part of this growing community.
20:36
Speaker 1: If you have enjoyed the episode, don't forget to subscribe,
20:39
Speaker 1: leave a review, and share it with someone who might
20:41
Speaker 1: need it. You can connect with us on social media
20:44
Speaker 1: via Instagram, Facebook, and TikTok under the name Tom's Hirshprung's Podcast.
20:50
Speaker 1: See you next week. The