NTSP Specials (Season 2) Brendan and Shevonne Part 3

This Special Episode is a fascinating interview with Shevonne, the inspirational mum of Henry. This is Part 3 of 4 episodes. 

Brendan and Shevonne discuss the journey that her family have been on with their little boy who has had a tracheostomy from a young age. Thanks to the tenacity and resilience of Shevonne and her family, Henry leads an incredibly active life, despite needing to take a ventilator with him wherever he goes.  

Shevonne has been incredibly open about the challenges they faced and shares how they navigated the complexities of the health and social care system, care packages, funding and access to schools. Essential listening for anyone in a similar situation, or for health and social care staff who are tasked with trying to help.

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The UK National Tracheostomy Safety Project (NTSP) is committed to providing education, information and resources to improve patient safety and the patient experience for those with tracheostomies and laryngectomies. All of our resources are housed on our website www.tracheostomy.org.uk, accessed by over 30,000 visitors each month from around the world.

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Our goal is to improve the safety and quality of care for patients with tracheostomies and laryngectomies through education. We work closely with patients, families and healthcare professionals to develop new resources to improve care. We’ve collaborated with key stakeholders in tracheostomy care since 2009, and developed freely accessible resources, supported by online learning developed with the UK Department of Health. We’ve worked with the Global Tracheostomy Collaborative since 2012 to improve care for patients and their families everywhere.

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Transcript

SPEAKER_00 0:07

So welcome to this special interview as part of our Trachey Talk series. This is me talking with Siobon, who is the mum of a little boy called Henry who's ended up with a tracheostomy and has been discharged from hospital after a long time there when he was newborn. Made it home, made it into school, and Siobon is explaining to us how she's driven the process behind that. And if you're a family of a young person who's ended up with a tracheostomy, particularly in the UK NHS, but this will be applicable anywhere, Siobhan describes the sort of services and the levers that you need to pull in order to make things happen. And Siobhan describes how Henry runs round play parks on his ventilator, goes to school and lives a happy and active life. Siobon also signposts a lot of the services and the things that you can access and describes how she made them happen. So it's a fascinating interview. I hope you find this interesting and I hope you find it useful.

SPEAKER_02 1:13

As a parent, your parental responsibility is for your child. So throughout any any healthy child's life, their parents, you know, the parents are responsible for everything. You take them on holiday, you know, in terms of everything you do. So when you've got a child with healthcare needs, why is it that someone else is the decision maker or someone else gets more say over your child's life when you're the one at home living that life? You know, there's there's things in terms of acute services that, you know, for instance, getting a getting a tracheostomy wet. Now, this is this is a an area that is is uh you know questionable, but as I've said, I'm a risk taker. Now, Henry can swim. Okay. I have taken risks to enable him to do that, and I've done it safely. And this is not me, I'll be very clear, this is not me saying go and take your child with a trachea and ventilator swimming. I'm not saying that. But I have done that, and Henry can swim 10 metres independently, okay? There's lots of reasons why he can, I think, do that, and there's lots of reasons why I think other people may not be able to do that. But the main reason we explored water around the tracheostomy is because we wanted to let him have a shower. We wanted him, along with his brother, to go and step under a shower. Because we do it every day, and it's a massive part of everyone's life, you know, maintaining your hygiene. No one wants smelly little boys. I mean, there's not little boys running around all the time, they need to be showered, you know, they need to have baths. So we wanted him to just have that ordinary part of his life again. Where when you're in acute services, it is very much you do not get this wet, you do not put water around this area. And I'm sure that that's what's the they're still training because that is the safest thing to do. However, when you come out of hospital and you're in your normal life and you're showering every day, or you get caught in the rain, or you've spilt juice down your neck and you've got a tracheostomy tape, it isn't actually for us, again, for us talking just about Henry, it isn't an emergency situation. How his dressings are, how his stoma is, how his trackie is, how he's, you know, he doesn't have signal aspiration, all these things. He can tolerate getting that area wet to the point that he can swim. And we've only discovered that by trial and error over years. And again, I'm being very clear that I'm not saying go swimming with a trachee. I'm not even saying go and put your kid in the bath with a trackie. But what I'm saying as a parent who is a positive risk taker and is a professional is with my child, I have made decisions. And any parent of any child will make their own decisions, but mine get questioned, mine get unpicked. Mine get is that is that child's protection? Is that safeguarding? Well, is it safeguarding if you put your healthy child on a motorbike and send them around motocross on a on this, like I wouldn't do that to Henry. I'm mine or speed team, I don't know. But there's certain things that you can question anybody's decision making about their children, yeah, of whether it's safe or not. But with mine and with any parent with a child with health needs, everything gets some picks. And and again, I could go down the route of the child protection stuff and how a lot of a lot of professionals will come into homes and maybe look at things and go to child protection. Actually talk to that family and ask them about what they're doing and why they're doing it. Because I can honestly say, when I'm extending Henry's tubing on his ventilator from four metres to six metres, which nobody in writing says I can do. But I do it and I do it for about 10 to 15 seconds, where he's on a long tube, so he can reach the top of the climbing wall. When he goes on the climbing wall on holiday at the caravan park, and all these kids are climbing up this wall. Henry's physically able, he can climb that wall, and I've enabled him to not I've not disabled him in any way. Whenever he can do something, I'm goffygo. You want to do that? Let's go, let's let's work it out, let's see what you can do. That climbing wall's exactly the same. So when he goes up that climbing wall, imagine only being able to go four metres and looking at the top and seeing that I could probably get there, but he'd never ever been able to do it. What kind of life lesson is that? That's what you could get, but you're never gonna have it, Henry. I'm not gonna teach him that. I'm gonna take a risk and I'm gonna accept that risk for 10 or 15 seconds to put him on that six-meter tubing so he can reach the top. The smile and sound that comes out of his voice of joy that is beat disabled-bodied 10-year-old next to him, that is life. That is quality of life, that is living your life. And that, if you were gonna refer me to child protection, that's an inappropriate referral. And anybody that did that, no one's done that to me. But there's so many occasions where they probably could have done if they weren't looking and seeing what I'm enabling my child to do rather than saying, no, that's your limit. Yeah. You're really gonna get that flat on that. You know, and so again, not everybody has that maybe confidence to do it, but I know my child better than anybody. I can tell you what he can tolerate. And again, an example going into the first time we could do a lung function test. So the first time he was old enough to be compliant at age six, where he could walk down the patterns route, you know, standardised assessment with all the um SATS monitor, CO2 monitoring. And we did it on BIPAP, fully ventilated with a consultant present because he's never done it before and his exercise tolerance. And I'm like, this is a child that runs around a playground now with a ventilator on his back, because now we've got a five kilogram ventilator, which again that's another story, but he runs around with this ventilator on his back now, even though he's only got one good working lung, he's mainly fully ventilated all the time, with small time on a speaker bell, but never on activity, you can't do that. But yeah, we're having this lung function test with a consultant present, knows him well, and we're doing it on BIPAP and we've got some read-ins, and we do it on CPAP and we've got some read-ins. And me and my husband are like, six minutes? Why don't we take him off the ventilator? Why don't we see if we can what readings we get for six minutes just with the tracking? This was before we're speaking about was ever a question. It never like brought into the into the equation, and so there was a bit of discomfort. You know, they had a little talk. Yeah, okay, come back in half an hour, and yeah, okay. So we'll give them a bit of time to, you know, recruit again. Um, and so then we did it off the fence layer, and that information, as parents who were suggesting an additional risk, we're doing it in a safe environment, know our child, know his tolerance that when he runs off at home, he'll disconnect, you know, because he's judged his distance wrong and he's but he's not completely deflated and collapsed, and we're not having emergency situations at home. We know he can tolerate transfers to take his top off, you know, this kind of thing. So we're like six minutes, we'll know if he needs to go back on, trust us. And they do. So that's what we did. And that information meant that we could try a speaking valve in line in the circuit. And then we've progressed over two years to putting a speaking valve on his trackey and having some time off the ventilator. And the management for Henry is about reducing the damage to his one good lung by taking him off the ventilator at any time. So we tally up at the moment, you know, two minutes in the classroom speaking valve to go from his seat to get a laptop and go back again. You know, in those two minutes over a day, we might have to add up to two hours. That's two hours of less damage to his lung because of the speaking valve views. But the only reason we knew he could tolerate a speaking valve for a short period of time is because we said as parents, let's do this off the ventilator. And that acute trust said, okay, let's give it a go. So it's about pushing boundaries, it's about communicating, it's about trust. And Henry has made improvements. He's not, he's not well. I'm not in any illusion that he's well. But if he can live his life on a ventilator and have a great quality of life, I would happy, I would be happy if he only lives till he's 30 because he's having the best time. I don't want him limping to the age of 50, not being able to climb the stairs, oxygen at home because we've we don't need a ventilator anymore, but he doesn't have quality in his life. That would crush me as a parent. And some people might completely disagree with that, but that's me, and that's how I see things, and that's how I live our you know my life. My husband might disagree again, and this is the thing, we don't agree eye to eye on everything, but I want him to have the best life he can, and at the minute, that is what we've got.

SPEAKER_01 9:14

We are living in that's what's happening.

SPEAKER_02 9:16

We're living our ordinary life and we're taking risks, but I need a staff team around me. I need my we're called Henry's Angels. If I do not have Henry's Angels, all of this crumbles, all of it. You know, three people every day I need for him to just go to school. You know, to leave the house, you know, when George was a baby, I couldn't, I couldn't have had him without grandma leaving work and and and helping me full-time, which was her decision. I didn't ask her to do that, but she did that because she knew I couldn't have another baby otherwise because we didn't have the right care at home. Now we've got a fantastic robust team of 11 staff, and they are, you know, you talk about blurred boundaries. When you've got a direct payment and children to care for, there has to be a blurred boundary because you're living in my ever you're living in our everything. You know, and that that's again another bigger discussion about how I want my my staff to feel. You know, I employ them, I'm their employer. I want them to feel invested in our family because they mean I have a life. You know, they mean I can go for a night to Leeds and see my friends and know that his dad can still go to work that day and come home at six or seven, and know that these people that we're invested in who work for us will keep our children safe and and and bring bring them on in life, you know, and and we'll adhere to all the many rules and regulations we have around his healthcare and just about managing children and the behavior and all of those boundaries that you have as parents, that these people are doing that. But literally, without those people, I I wouldn't I wouldn't work, I wouldn't sleep, Hemi wouldn't go to school, everything would would collapse. So they are absolutely pivotal to us living our life, and like I said, just going to school, every every child's expected to go to school. But even just this morning, one staff member has got the flu, so she can't come in, she's been at hospital. So another staff member has stepped in, which means I could still come and do this. But if that didn't happen, what I do is I can only do agency work as an OT, really, because I have to be able to drop that work to step in to be a Henry's angel to be able to go into school and support my child so he's safe, because if he hasn't got two people there, he isn't safe. And I have a lot of interest about how we do it for Henry in school and how he's there, but it is all on that head teacher saying yes. If that head teacher now turned around and said no, all of it would stop. And that's the same code of practice. It's got to be the head teacher and is in agreement to the direct payment being delivered in school. But you know, there's a mechanism of direct payment in an EHCP. What's it there for? I've never heard it been used before. Maybe this is what it was always designed to be used for, which no one's ever done it. And that's the annoying thing about services in general. No one ever comes to you and says, This is what you can have, or I can see this is a struggle. Let's try it this way. It's always, in my experience, coming from the parents, that we're saying, this is what we need. And I think I found a way we can do it. Do you know what I mean? It's like you've got to live the you've got to be in the in the experience and living that experience to fully know and appreciate what you need. And then you need key people in social care or community care to say, yeah, we can do it this way, or it's not been done like this before, but let's do it creatively. And actually, nine times out of ten, it will save you money. I'm sorry if I didn't answer your question there, Brendan. Oh no, around the houses a bit.

SPEAKER_01 12:42

It's honestly it's fantastic listening to you, Siffon. I mean, the the the it's like gold, uh, what you're uh what you're explaining, because you know that it is a well, certainly the way our service is set up, it is a minefield, as you know and have experienced. And knowing how to navigate that from your lived experience, I think is way more useful than just saying, Oh, go to this website or whatever. It's it's so it's fascinating listening to you explaining. Um, I wonder if we could sort of summarise just a couple of things that uh I mean, I posed this question before, a sort of list of things you wish you knew that you know now, and you know, that's obviously going to be a pretty long list, and it's quite tricky to sort of uh bring all that together. Um, but I mean are there any sort of burning things that that you ended up, you know, the situation you're in now sounds like it's what you want, you're in control of it. Is there anything that you think would have really helped if you'd have known it, you know, six, seven years ago potentially?

SPEAKER_02 13:46

Certainly the discharge from hospital, um me being a capable person thought I could go home with limited care, have a review, and then get the actual care that I needed. And obviously that's what was meant to happen, and that didn't happen for us. So my biggest regret was not taking the biggest package that I could from hospital because the caveat that was used in our local area was you were discharged with 70 hours, so yeah, and that's not what we get like for eight years.

SPEAKER_01 14:16

There was no negotiation over it because it's being set up.

SPEAKER_02 14:20

Fundamentally, completely ludicrous that that was the line and that they took, but they did. Um, like I said, never in writing. Um, but I am a truthful, honest person, and that's why we still only have 70 hours of funding now uh from health. So I would say at the point of discharge from the beginning, have as much care that you feel you need. Have if they're offering you more, accept it. Push away all those fears in your mind about having people in your home, what life will be like, because when you get home, it will be completely different. And that was what I was underprepared for. I hadn't thought about it enough. I was just desperate to get home, and my heart was there, and my head wasn't, and it's completely different. You cannot, I cannot ever put into words how different it is being in hospital for a period of time, and we were there long, a long period of time, but I imagine 10 days at the beginning felt like a long period of time in in the NICIV. So 15 months then was like, you know, so however, you know, however long you're in hospital, coming home is completely an unknown entity. You do not know what practical life will be like until you're living at home in that situation. Take as much care as you can possibly get, ask for as much care as and over and above what you think you need, and then cut back from there. Because if you're in a position like we were, and they toe the line of you were discharged and that was what you were medically fit for discharge for, that's what you were able to, you know, manage with, no, that wasn't actually the case, but that we would have had a very different experience if we'd have had more care hours from discharge, definitely. Um in terms of other learning about complaints, if you're thinking that you are not being treated fairly as in as a parent, as your child, you know, you're advocating. When I say we, I mean in Henry, you know, if if Henry's not getting the support he needs, when I say it's me, it's because I'm his advocate, so it's you know us. Um but if you feel that you're not, his needs aren't being met, is normally the term, isn't it? That there's something and there's an instinct in you, trust that instinct wholeheartedly, make a complaint because what happens is complaints have timescales on them, so they have to be adhered to. If you uh put your trust in people, which uh have talked a lot about trust, but even if you trust somebody, if there's a time scale on it, they will move quicker. In terms of EHCPs, which obviously I know there's a whole white paper and the send reforms going through, but currently, and our experience is with the send reforms again, sorry, with the EHCP process, I should say, you have this mediation time in between. They drag on for years do EHCPs, even waiting for assessments for all sorts of things, you wait for a long, long time. I skipped mediation altogether. There's an option in your information. Do you want to do it through mediation? We'd already done mediation before the term mediation came up, so no, I don't. I want to skip that and I want to get rid of all that wasted time and I want to get to the point. And like I said, two years I started that process early for Henry, where we had 14 professionals around the table before COVID, and all of them politely were scratching the head because everybody was there because they wanted, they should have been there, but they wanted to be there because they weren't sure what we were going to do, but they didn't know what we were gonna do, and I didn't at that point know what we were gonna do, but they were all sat around scratching the head, thinking, right, we've got two years to get Henry into school before his compulsory school age. He'd already missed out on nursery, COVID happened, was you know crazy for everybody. But he started school with the same kids he was meant to start school with, and for me, that is important. He should not have been delayed because of his health needs, he should not have gone to school a year behind. You know, there's an argument he should be a year above, actually. He's really clever. Um, you know, but he started with the kids he should start with, and that is why that took two years and skipping mediation, and COVID, and the tribunal, and a care package, which included me. You know, it's a really hard system to navigate, it's a really, really difficult road to walk down being a parent of a disabled child with such complexity. And you could argue, heavy's on a breathing machine, surely you get support. Surely, no, we have to fight for all of it. Anything that you can skip the time-wasting part, and again, people might be sat there going, I can't believe she's saying that. But I'm just saying from my experience, and if we hadn't done that, it probably wouldn't have started with the the kids you should have started school with. So I'm glad with every decision I've made.

SPEAKER_01 19:11

I think that's what's shone through from this conversation, Siobhan, that you know, it it's that sense that you know mums and dads I would like to think as well, uh, absolutely best. And you should listen to them. Uh, you know, parents are an integral part of that MDT, it's very much a team game, and I'm sure lots of people will listen to this and be have their eyes just opened up by you know what you've been through, but also the signposting that you've been able to sort of share and how you've got stuff done and and and sh you know sharing what your life's like now and but but that then the the stuff you've had to do to get there. But I think what's really useful that you've highlighted it it's your the way you've gone and found the levers to make those things happen. And I suspect there's lots of healthcare professionals and people working in social care that probably don't know about all those levers, so you know it's it's incredible that you've gone out to find them. And I think if anyone is is is faced with the prospect of a child uh making that transition home with a tracheostomy and and a care package and thinking about okay, what's life gonna look like, what's school gonna look like, and how do we survive as a family? I mean, listening to what you've just been willing to share for the last you know hour and a half or so is is just amazing. So thank you so much for for being so open and honest and and sharing your story. It's it's really inspirational. So uh thank you so much.

SPEAKER_00 20:41

So that's the end of part three of our special series of interviews with Siobon. I'd like to thank Siobhan for talking so candidly and openly and honestly about the levers that she had to pull and the mechanisms that she had to uh find in order to make things happen and get that care right for us on. I hope you found that interesting, and if you are somebody who's looking to sort out Tracheostomy Care for a member of your family, I hope you found that useful. As ever, the views that you heard are our own views, they don't represent the organisations for which any of us work. Please like, follow, and comment on any of our outputs on our social media. You can find a lot more information on my website, which is tracheostomy.org.uk. And there's part four of this interview series as well if you want to find out a little bit more about uh Henry's life at home with Chivon. So thanks for listening and look forward to seeing you next time. Bye for now.