NTSP Specials (Season 2) Brendan and Shevonne Part 2

This Special Episode is a fascinating interview with Shevonne, the inspirational mum of Henry. This is Part 2 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.

We are funded by grants, donations and in partnership with medical device companies through unrestricted awards. This podcast series is supported by unrestricted education funding from the Atos Learning Institute. The funding supports the professional production of the podcasts and videos, and the medical device companies that support us do not have any creative influence over the content that we record. All of our work is undertaken by volunteer healthcare staff, patients and their families. 

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Transcript

0:07

Welcome to this special interview for Trache Talk. This is me talking to Siobon who is the mum of Henry, who's a special little boy who's ended up with a tracheostomy. This interview's been chopped into several sections because it was so fascinating. And Siobon in this section is talking about that transition going from hospital to home with a young child with a tracheostomy and a ventilator. It's fascinating learning how Siobon and her family navigated all the complexities of care, and Siobon started to plan early for what would happen with Henry when he was ready for school. And she tells us about the process in our British NHS for lining up the services and support required to get a child with a tracheostomy and a ventilator into Maid's Cream School. So over to Siobon. So we were discharged out of intensive care, which would again like been there pretty much for nine months all of his life, and left that team of people that really have got they'd got into that point, like a family, really. And then we stepped down, so there was some apprehension about this new ward, but it was geared up for long-term ventilation and preparing you to go home. So unfortunately, we couldn't go home. It took longer, I think, for us because it took still five months from that point, five and a half, because he still had some bioabsorbable stents in his airway. And there was concern that the tracheostomy and the bioorbal stents would touch and they'd create problems. So they had to be removed. So that was also quite tricky. And he was very unwell during that period. But he did stay in on the long-term ventilation ward, and it meant the biggest thing for me was I could be with him. Intensive care as parents, you can't stay overnight, you can be there as long as you want, hours-wise, but you have to go to it, you can go away and sleep. So it meant in you know, we were in a hospital where we could be in a cubicle and we had an ensuite, and we could I could be by his side. So I really then for the first time got to know what Henry was like at night, or to know what he did when he woke up in the morning. And as a mum, I was yeah, living and breathing my son. So again, that was tricky because then it's you're quite immersed in it. Then my husband was lucky enough to have nine months off and then went back to work and then would come down every weekend, as would um grandparents um and other family members and friends. Um but it was really the the training to to think about right, we're gonna have to take Henry home with all of this because this is his, this is this is Henry now, this is who he is. Um so quite daunting, but again, we had this very clear pathway of what we were expected to do. So it was training up to change the tracheostomies, um, to two-person job, and uh how risky it is uh in terms of if the stoma were to close or you needed to do emergency intervention, you know, there's the smaller tracheostomy, so all of your emergency blue box kind of stuff. Um suctioning, that was a strange thing to get used to. You know, you saw the physios do it without a thought because that's that was their job. But when you're the one passing the catheter into the tracheostomy, you're talking about all the risks of you know, to measure it and to make sure that you don't go any further and the risks of what can happen if you do. Um, but doing it for the first time, even the first few times, you you feel like you're gonna hurt hurt him. Yeah, that's what it feels like. But when you think about it logically, the the catheter has only been passed inside the tracheostomy, so it's never touching him actually, it's touching some silicon. And so I think you need to yeah, think think about it practically. Um as long as you're doing what you're guided to do, it's absolutely fine. And for you to be able to retrieve the secretions actually means that he can auction it properly and and yeah, sound it's a lot of it. So it's actually a good thing, isn't it? It's just getting your head around it. Yeah. So I mean that there'll be parents, um, I suspect, right now, listen to this, thinking, oh my god, you know, that this is me right now, you know, I've got to learn all this stuff. And and what I'm taking away from you here is that it's you know, it's it can be quite daunting, particularly the first few times you do it. And even you as a healthcare professional, you know, you you're obviously you're you're 90% mum and and and 10% healthcare professional, I suspect, in in in in that setting. But it's you know, the the message I'm hearing from you is that this is all doable and achievable. Oh, 100%. You've just got to take one day at a time, one step at a time. So if you think about, if you think too far ahead, you know, if I thought about even for us, just get it going home. That was a you know, that's what we're aiming for. Everybody when they're in hospital, they want to go home. So that was our aim as well. But that was too big a picture to think about. I couldn't, it was overwhelming to think about taking this fully ventilated child home. Wow, what might how are you? So you've got to stop yourself. And I think my professional background gave me that ability to compartmentalize things and go, no, think about the here and now. And that would be my one of my tips, really, to any parent in that situation when you're in hospital, living that life is just be kind to yourself. And if you need to close your eyes, you know, for half an hour because your child's sleeping, just do that, you know, because that's I think what normal people do at home when they're sleep deprived as well. Apply the same strategies and don't think too far ahead. Just one day at a time, one step at a time. So if it's suction in that day, suction in, if it's a tracky change, it's that. And talk openly about things. Um, don't let that anxiety um sit with you. Don't feel like you can't speak up, don't feel like any question is a silly question because it absolutely isn't. Everybody in that environment wants you to go home and want you to take your child home and want you to be successful in doing that. And they don't want to see you coming back repeatedly, they don't want to see that happening either. Going back to the coming out of hospital bits, um, you know, we were we were fit for discharge, so uh we were going home in my mind. Um, and that's what we should do if we're fit for discharge. However, because of our long-term stay in hospital, the MDT at that point, which we weren't included in, I asked if we could, but we weren't for some reason in that part of the hospital. And I think that was a big failing, to be honest, because we didn't develop any relationships with our community teams, with our uh our CCG at that point, but integrated care board now. And suddenly on paper, you've got this really scary child, as in he's got complex needs, he's fully dependent on a breathing machine, he's got a trackie, he's got a Hickman line, he's in the hospital, you know, all this time. What are we gonna do with him when he gets home? And they wanted us to step down to different hospitals, and that would have been another two to get home. And I knew we were getting we'd get stuck again. My background um working in social care. I knew we were gonna get stuck in hospital, and I thought, I don't want to do that, he's fit for discharge. He should go home, that's where he's gonna thrive, that's where we as a family will thrive. So I sort of said, Why? Why can't we go home if we're fit for discharge? And so the MTT would come back, and the long-term ventilation nurse would come and say, Well, there's issues with equipment, it'd be different from what we have in London to there. And I said, Well, fine, my husband will bring it down. What's the equipment that we need to use? So, again, that thing about asking the questions and not just accepting the information that's given to you meant that we tried a different circuit for his ventilator and it was absolutely fine in hospital. Said, right, so we'd take that one off, there's not a problem there. Um, his nebulizer, that was a different one locally, so we tried that, and yeah, he couldn't tolerate that, so we had to have the one that we had in the hospital. So the local area had to purchase that. So I said, right, we've tick that one off. Um, what what else is there? In terms of care package, it was going to be nursing care overnight. Um, I'd said I did want just the overnight care to start with. I hadn't had a baby at home, you know, those three days were a distant memory. I had a very different child I was bringing home now. So I wanted to go home and find my feet and see what I could do because at this point, you know, you're trained up in London to go out for periods. So I could go with Henry for a coffee, you know, just round the corner from the hospital, just me on my own. So although it takes two people to manage a trackee and plus a ventilator and a Higman line and all your emergency pack there, and he had a cortisol deficiency, so all your emergency pack there. But I was capable and confident that I wasn't going to be putting him in a safe position. I could go around to a coffee to have a coffee, bring him back again. And they build you up, they give you that confidence. So I took him to London Zoo at one point on my own and met a friend there. And I mean, my anxiety was up here. But I was like, I need to set my goal and I need to do it because how are we ever going to go home if I don't? So we were discharged with 70 hours of nursing care, which was 10 hours overnight, seven nights a week. And then I knew through our continuing healthcare side of things that we could have a review and we'd have our care reassessed. Um, so that was the plan. And then when we we did get home, because again, the only thing that was gonna keep us in hospital after we'd had these discussions with the MDT was professional anxiety. It was how they were gonna cope with this child in the community. It wasn't anything to do with equipment, it wasn't anything to do with the care package because that was ready. It was the anxiety of bringing him home. And I said, Well, he's fit for discharge, we're gonna get on the train, me and my husband, there's gonna be two of us there to manage all of his needs, no one's driving, we're having to stop on a motorway, it's two-hour train, someone's collecting his at York and it'll be in our home. And that's what we did. And it was so, as parents, liberating to go out and go home with our child. And we had him christened before he left in the hospital because again, that was his family when we were there. Um, those are people that knew him, and we were leaving all them behind to actually go home to our actual family where we lived. So then everyone started to get to know when he was 15 months old, you know. But if we'd have towed the line of you have to step down, I don't think we'd have been home by the time he was two years old, if not older. So we got home and we had a couple of nights without care, which was my request because again, I'd been living with him in hospital. I knew what his overnight care was. What we were coming to was a brand new house. Um, a lot of people get stuck in hospital because of housing needs and finances. Um quite luckily, my husband with our house was on the market and we moved into a brand new home. So we're bringing Henry and I was coming to a brand new home, the home I knew had gone and we were somewhere else. Um, but better, bigger, thankfully. Um, because once you have all this medical equipment, it's got to be where you're gonna put it. Yeah. Um so we we did get home, but then the care package that was meant to be in place was never seven nights a week. And that they say, they say a lot of research. There was a, I think, a systematic review over 25 years about experiences of people coming home from neon native intensive care, that was, um, coming home with the kids, and you feel like you fall off cliff edge as a parent. And that is so true. You are built up to be confident, to be resilient, to know what to do in an emergency. You're literally mini paramedics for your kid when you've got a child like Henry, and then you go home and you're managing him, and when paramedics do arrive, they go, What do you need from us? Because they don't know about ventilation. Yeah, they're not experts at all in that. Yeah. No, and track is they absolutely aren't. So they go, What do you need? And and you say, I need this, I need the cables, and and so when you get home and you ask you are the experts, but then your community teams come and we were in a really the area we live in just didn't have an understanding, was really archaic, I'd say, in terms of its approaches to complexity of care that Henry needed, we were just told you were discharged with 70 hours, and that's what you're gonna, that's what you get. And even though the 70 hours weren't a full complement of nurses overnight, so one waking member of care over overnight with him, seven nights a week, we'd probably get one week three nights, the next week five, the next week three, two uncovered, two more. And the sleep deprivation is is one thing. Any parent knows about that, but then you've got a child who might not wake up, might not be alive in the morning if he's not remaining attached to his ventilator. How do you sleep? Me and my husband, we had to take it in shifts, and he was still working because he was the only breadwinner for the family. The first year, honestly, at home was was like like that, and it was impossible. And I could not understand, and I would I was complaining, so I was exhausted. I was on my own every day with him, and this is a mobile child, so just paint that picture. This is a child that's walking. When we came out of the hospital, he was walking. So I had a 12-kilogram ventilator on my back, I had 1.4 meter length of tubing that went from the pipe from here to his neck, which is basically one step away from him at all times. And I'm allowing him his freedom of movement to move around and explore, as you know, uh you know, a 16, 18 month old wants to do. And I'm literally behind him the whole time. And the only time I can put that ventilator down is when he's in his high chair, because he's contained. Yes, true. The ventilator is by his side. Yeah, he's not going anywhere, or in his pushchair. So we spent to cut that that I could go on for how brutal and and just degrading is begging your local services to help you, and and knowing all the legislation and complaining and putting it in writing, you know, when I'm when I should be sleeping and resting. When I've got this child who I don't know how long his life's gonna be anyway, all of those emotions, everything, the trauma of what I've just been through for 15 months, and I'm just left to it. I could not, could not believe it. So after the end of complaints, complaints, complaints, getting nowhere, never having no review, never put anything in writing, and they'd verbally say things like, You don't have a right to work. I could not believe it. So I had no option, no choice or control over my life. The expectation forin our local area was you're gonna care for your child, and that's it. And I wanted to do that, but I also wanted to be a person and go back to work and keep my professional registration and all those things. And at the end, at the end, we um we paid for our solicitors because we had had an independent continued healthcare assessment who couldn't again believe what what limited care we were getting. And that we gave to our our CCG and said, This is what an independent continued healthcare team are saying. As a as a can you know, as a CCG, you should be going and asking someone to do this impartially to compare yours to see if you're you you know you're delivering your services in the right way, and they weren't doing. So we were funding all this, although we only had one wage coming in. Um, and the only way we got we moved forward was to do with going through an EHCP process, which had started early just before COVID. No one knew what to do with Henry. I was crying in meetings because I was emotionally exhausted. I was not put together, I couldn't advocate for my own child because I was just too emotionally involved and attached and exhausted. And the EHCP try went to a tribunal, as like 98% of them do anyway. I mean, my was on a my son's on a breathing machine. I mean, how more dependent do you get? Um so the EHCP tribunal outcome was with us, favoured, you know, the parents, and it said that he should have a nurse in school and a healthcare assistant to train up alongside that nurse. And in the school should be awareness trained staff. Over time, that could downgrade to two trained healthcare assistants and awareness trained staff in school, and a third option would be trained carers, so people we train ourselves through a direct payment and awareness-trained people in the school. So always three people around Henry at all times, one of them carrying his ventilator because again, he's not strong enough to do that, he's moving, so someone wearing his backpack and being close to him at all times, and by the second year being at home, we had um five meters of tubing. So actually, we could be a bit further, we could put the ventilator down and he could move around five metres from that point. So we learned a lot with that. But this tribunal gave us that legal backing that he should get the right support and be able to start school at compulsory school age, which was my goal two years before compulsory school age, that's what we were doing. And so we got Hemi in school, but it was on a direct payment through an education, health, and care plan, and that has been how we manage his care. So now, and for the last four years, five years, he's had a staff team of 11, which is made up of me getting the money. So I get the budget from health, so over the overnight care, which is the THC funding, I get the direct payment from social care, and I get a direct payment through an EHCP for education. And that isn't a done thing. The solicitor said to me, How did you know about that? And I said, Because I read my small print. I read the same code of practice and I saw where you could have the funding come directly to you, and we are a candidate for that. Because Henry needs care across all those areas, he can't have it separate because you need to know him, you need to know what he sounds like, um, you know, you need to know when he needs a suction, when he can go on his speaking valve. You need to know him. So we needed this team of carers, and that is the only way that he goes to school, you know, 94% attendance the first 92 for nursery, 94% year one, 94-5% year two, 95% for year three. And this is a child who's dependent on a breathing machine. Now you ask anyone in the country if they've got any long-term ventilated children in education, if they've got statistics like that for attendance, and they will say no, that's phenomenal. And that is because we've got the right support, the right team of people that know him. And we we've had to fight for it. It's cost us £15,000 in solicitors, and that's with legal aid. And you don't get legal aid with children's cases, you know, you you don't. It it, you know, I had people, charities well, childhood charity that I'm really well um ambassador for, and they do phenomenal things, but they were saying, How are you getting legal aid? And I said, I don't know, I don't know. I just keep pushing, I just keep asking, you know, the right questions, and I just know where we need to be, and it's just how we get there. And thankfully, we've got there. Um, and Henry's thriving because of it, and I'm working again, you know, and I'm still an OT, which is important to me. And don't I have that right as a parent to have have that? I worked hard for it, I want to keep it, and I'm a good one. I mean, there's gonna be a lot of people listening to this who who, you know, maybe aren't in our part of the country, never mind uh our part of the world, and and it's you know, depending on how the services are set up or not set up as you're uh uh explaining. I mean, it's it's it's well it's horrendous listening to you sort of telling that story. And for people like me who work in hospitals, you know, we sort of we do our bit if you like, and then you go, right, great, social care, or the community will be able to sort this out. And and I I I I guess I'd summarise the people who who aren't working in in our healthcare system that it it sounds like you've had to go out and find how all these different pieces of the jigsaw work yourself, and then you've had to put them together yourself. Uh, you've had to um pay a lawyer to to to force the point, and and you've got to where you are now because of your drive, dedication, determination to to do what you knew that Henry needed. And I mean, I I would imagine, well, I I I know there's other healthcare systems sort of like ours where you know you you have to fight for everything. Um, but I mean it just goes to show what what can be achieved, and I think your story, although it's you know, tough listening to all the things you've been through, what you're able to sort of point out the window now and say, Well, look, he's he's over at school now, and you know, he's got this care package, and and like you say, you your your family life sounds amazing, you know. You've got two thriving children, you you you're back at work yourself, and you know it's a real inspiration, and I guess um, you know, I feel like apologising to you for the the state of the the healthcare service that you've had to go through to get to that point, but it's a really inspirational uh story, Siobhan. So, you know, hats off to you and and thank you for explaining all that because there'll be people you know listening to this who will think it right, how on earth do I do this? And so laying it out like you have done is is is really important. So um thank you for doing that. So that's the end of part two of this special interview with Siobon as she describes the life of her young son Henry and all the complexities that that brought because of his tracheostomy and his care needs. There's lots more information on our website for parents, families and patients, hopefully explaining some of the complexities around care that patients with tracheostomy sometimes have. As ever, the views that you've heard are our own views, they don't represent the organisations which we work. Please follow, like or comment on our social media channels. Stay tuned for subsequent episodes where Javon tells us a little bit more about what happens to Henry as he gets a little bit older. Thanks for listening, and we'll see you next time.