NTSP Specials (Season 2) Brendan and Shevonne Part 4

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

Hello and welcome to this special interview as part of our Trachey Talk podcast. This is part four of an interview that I did with a lady called Siobhan who has a special little boy called Henry who has a tracheostomy and is attached to a ventilator. Siobhan has been extremely candid, extremely generous, and talking very openly about the challenges she faced on her journey from hospital to home and to getting Henry into school. Siobhan's been talking a lot about her experiences with lots of different groups, and she's been really campaigning and championing the role of the family in that multidisciplinary tracheostomy team. And Siobhan's picked up lots of insights and information along the way, which she's really happy to share with anyone who's in this situation. So I started off part four of this interview by asking Siobhan how on earth she's actually managed to engender change and to drive those improvements in some of the processes that she's being involved in. So over to Siobhan.

SPEAKER_02 1:26

I go in and speak about this lived experience to nurses, children's nurses, to social workers, and I'm trying to educate the workforce of professionals that are coming out, trained up to come out and deliver to community care or acute care or community care, wherever. I'm trying to help their value base and their understanding with this sort of information, because that will infiltrate throughout the country. You know, these people won't just stay in this area, they'll go off to different areas. And I do think there's a lot to be said for educating the professionals as they're coming out of education to work in this way, because it's really hard to change the system. Because I've said I can't do it in my area. And social media and all this kind of stuff. I'm so grateful to be able to talk here today because this is also what spreads, isn't it? That there's a there's this freedom of speech that we've got, and it spreads between people who are living this life and we're joining dots, and hopefully over time we will make improvements. But I just don't know why systems that are so ingrained and archaic won't flex and won't change because actually it is helpful, and at the center of it should always be the children and the families. It should be for us and it should be the people who are living the life, you know, a shortened life often by healthcare, a life-changing life, which is disabling every single day, you know, whether you're an adult or a child living with a disability, it's disabling in a thousand ways. And I'll come off here and I'll want to talk about so many different aspects, and I've talked about a lot, but I cannot put into words how life-changing it is living with a child or someone with a disability. It's every day is different, it's up and down. You know, some days I just decide I'm gonna go to bed at seven, even now, and I will just go and get in bed with one of them because I'm tired and I'm exhausted, and the day hasn't gone so well, whether it's a fight with social care and pay rises, or whether it's you know, Henry's not not done so well at school because he's got into trouble because he's talking constantly, which again, I'm quite happy he's talking because he didn't have a voice at one point, so that he's getting into trouble for talking is just normal developmental stuff. But you know, these things weigh on you sometimes because you're tired, and sometimes I'll just get in bed and I'll just write off the day, and I'll just think just go to bed, wake up tomorrow and start a new day. And I still feel like that now because I manage a staff team of 11 and I don't get paid for it. But I do a lot of legwork, a lot of it. I do payroll, I do, you know, staff welfare, people are ill, I'm doing supervisions, I'm you know, I'm doing all the things a professional OT would be doing with a staff team of, you know, why aren't I getting a bit of an hourly pay for that? Because if it was a medical negligence claim and it was going through solicitors, I would be. Why is it an starty? Because it's social care and it's a direct payment. Why am I having to fight for pediatric first aid training? Why am I having to fight for appropriate moving handling training to look after my staff team's back care because they're carrying a 12 kilogram, five kilogram ventilator around with them a lot of the day? It again, I could, like I said, talk for England, but there's still a huge work, a huge amount of work that could be done. But there is a lot of learning that could be had from us in our situation across social care, education, and health. And thankfully, I've known enough and pulled enough strings and have enough resilience to not be put off and to write off a day and go to bed early and start the next day with a fresh mind, with a positive attitude, and knowing that my children are getting the best they can out of every day. Um, and then my staff team enabled me to do that. And so I'm grateful that we're in the UK and we get this ability to have this funding. But it shouldn't be so hard for so many families. We shouldn't have to spend our own money to do it, we shouldn't have to fight so hard to do it. Our mental health shouldn't have to deteriorate to enable this, you know, this to happen, this sort of stuff to happen. It can happen. We just need to talk about it. So thank you for having me on tracky talk and enabling me to talk about it.

SPEAKER_01 5:25

Yeah, I mean that that's gonna be my takeaway from it that you know we have a system that that can work, but you need to fight to make it work, which is you know, it it works for you just about with all those sort of gaps that you've just uh nicely highlighted for us. So it it's it's not perfect, but you you know, I suspect what you've got for your family and and and for Henry is is probably a lot better than a lot of other people in your situation because you've gone and found out how the hell to do it, and and that's uh you know, it's it's a really it's a challenge that shouldn't be a challenge.

SPEAKER_02 6:00

And I feel there's a lot, again, that that could be done better. There's mechanisms in place, but they're not being used to their full potential. But families are the ones that are missing out because families are in are at home in despair, in crisis, bobbing and out of hospital because they're exhausted and they don't have the right support to keep their healthcare. You know, kids go to every parent wants their child to go to school because it gives them a bit of respite. Yes, it's the best place for them, but ultimately you can get your cleaning done, you can get your shopping done, you can go for a coffee with a friend, you know, normal, like able-bodied children, healthy children. That's what school is, isn't it? And it's the right place for them to learn and all those things. I'm a massive advocate of education. But so do disabled parents, like children with disabilities, their parents want them to go to school to sleep, to just sit still, to have a breather, that they're not pushing that wheelchair like round and round constantly, or knowing that their child's just you know, not stimulated sufficiently at home and they're not getting the social interaction that they you know, all of it, Brendan, all of it. That school is everything to people, to children, and and especially the the parents of these disabled children, especially for me. I can only do this now because my child is safe and in school, my children, you know, and it's taken a lot of effort to do that and get that in place, but my goodness, it gives me my life back. Literally, I can I can work, I can breathe, I can get to the cleaning. I you know, I'm not looking for perfection, I'm looking that I can put my do my hair today. Do you know what I mean? Like it's almost like back to the newborn baby stage, you know, where you you know they're on you all the time and you you never have your hands free. But going to school is respite for everybody, regardless, you know. So you've got to get it right to give these parents and these caregivers, you know, if it's day service, you need to give them a break. You know, he's he's been at home, he's eight, and it's taken us at least five years to get the appropriate training year in, year out for my direct payment workers. And I had an argument this year about it because if we were an agency tendering for that package, as the normal route is, they would be expected to have children safeguarding, you know, pediatric first aid, moving handling. There would be no question, they would not be tendering for that package if they did not have that evidence of training as an agency. Why am I as a parent begging my local authority and health and education system to fund these mandatory training sessions for my direct payment staff? Why am I knocking on their door saying we need this training? Why am I saying I've got a budget here that I've got money and I can pay for it? I'll arrange it. I just need the nod. And if I don't get the nod, I'm using that budget inappropriately and it could be taken off me. I'm not going to receive that.

SPEAKER_01 8:46

Not really, right, okay.

SPEAKER_02 8:48

Yeah. So again, direct payment is audited. I am spending my budget as I should be, but I still need someone to give me the nod that it's okay. I did it once where I paid for children's safeguarding because they were coming out of date because we'd we'd done them at one point and we'd gone into school, so we needed to update them for school, um, and it was a necessity, you know, often all these things. Oh, absolutely, I'll get onto it. So I paid for it. Well, I got my knuckles wrapped because I paid for that children's safeguarding. Right. I said, well, it's mad that you're training. I didn't think it was a question. No, you need to ask.

SPEAKER_01 9:17

Right, so to supervise and audited direct payments then.

SPEAKER_02 9:20

So I'm sorry, I hold my hands up. I didn't think I was stepping out of line there. I wasn't using budget to go and pay for a holiday to Tunisia. I mean, that's a dream that we've never achieved yet. I'm not Tunisia, but you know what I mean. I'm not asking to do something crazy. Um, so now I need to get the nod on it. But I shouldn't have been to be knocking on the door, knocking on the door, asking for this training when it should be given, it should be arranged and it should be happening because that's what a care agency would be expected to deliver. So again, it's just this this whole like red tape and the power and control thing. You know, I I don't want the power. I do want the control because I need the control because it's my life, it's my children, it's my work, it's it's you know, it is my life. I can't hand that over to anybody else to control actually. Um, I it's impossible. It's very much a finely stacked, you know, stack house of cards. You know, you take one out and it would all fall. Someone has to be in control of that, and that's that case management, case coordinator role. That does have to be me. But I don't want the power, I don't care. I I really don't care. You know, I'm not on here to get my face on the internet, I'm on here to share what I've learned because I've learned a lot. It's been a hard process to do that, but now I can see the benefit for my child and for me and our family. And I want other people to experience that. I really, really do. And I think there's definitely ways it can be done because we're doing it. We're living it like we're living proof of that. I just wish that systems would listen and we could work together down, right down from the MDT from hospital, down to your local panel meetings. And I'll I'll update you on Brendan on that if I get into the panel meeting to discuss my own child care package. I'll let you know if I'm successful.

SPEAKER_01 10:58

But I mean, I I hope by doing things like this, you know, we we are raising awareness of of what the barriers, what can be achieved. And you know, when I first met you a couple of weeks ago, it was very clear that that your story had something for parents, something for carers, something for the community, but also something for the system and and and sort of healthcare professionals more widely. And I think you know, we've covered a lot of ground, haven't we? And and you know, those things that uh we sort of highlighted before about you know listening to parents, understanding where they want to go, being open and receptive to trying to enable some of those things rather than going, oh, well, this is what we normally do, you know, that that there are rules, there are ways around them, you know, that there's that there's there's obviously things to to to to navigate, and and what you've been able to sort of articulate so clearly is is you know, these are the levers that you need to be able to get your hands on to be able to pull, and you know that that there are ways around this. So um thank you so much for being so honest about all that, uh Siobon and giving us that insight into your life over the last uh sort of eight or so years. It's been uh really fascinating. So I want to thank you for your time. I mean, this will be really useful for for lots of different people. Um, so yeah, thanks for taking the time to talk to us today.

SPEAKER_02 12:11

You are more than welcome. Uh like I said, there's a lot of things that I could have touched on, maybe that I haven't. Um, you know, I'd I'd welcome anybody if they have any questions specifically about anything I said, you know, please do get in touch. I will say I'm not the best at coming back to you straight away, but that's to do with life and the situation. Yeah. Um, but I'm happy um at the time I can find to come back to people to to share what we've learned and to answer other people's questions. And people do contact me um about that. And and I think it's fair to say, you know, our our situation is probably very different because Henry is a mobile child. You know, kids that have the complexities of the breathing issues that Henry's had, Henry has, they they might be profoundly and you know, have multiple disabilities, be wheelchair dependent, be hoisted, and a lot of additional things, which I understand there's an OT actually. Um, that was my bag as moving and handling. So I I do understand that there's some similarities maybe in what we do and some that are things that are very, very different. But again, everybody's care package is different, everybody's life is different. But I think there are themes through what we do, what I've learned, um, that could still benefit other people. So I'd just say, you know, if something that I've said doesn't sit well with you, just let that one go. It doesn't mean that we've done it that way and that's the right way for you. I think it's just that if there's anything I've said that does resonate in you and think, hmm, I've not explored that avenue, or even that turning that thinking around, you know, you trying to barrage people with, you know, this is the evidence though, like, and just saying, wait a minute, you've got all the evidence. Why can't we do what I'm suggesting? Just turning that around as a one strategy opened up a whole new conversation with people. If you get embrawled in the negative, if you get embrawled in the, but they've said this and you're meant to be doing that, and you know, I can't believe what they've done to us. I if you get embrawled in that, and and don't get me wrong, there's lots of things that have happened that I could have gone to the press about, and I've chosen not to because I've chosen to put my energy into the future. I cannot change the past, I've got no influence whatsoever about what's happened in the past, but I can influence today and I can change the future, and I have got control over that. So if you can in your own way find a way to not continuously go over the negative and accept where you are, acceptance that's something I haven't mentioned, which is so fundamental. If you accept where you are, your health's your child's health needs are this, your life is like this, and this is where you are, then you will move forward. Now we skip forward, he's eight, still fully dependent on a ventilator. If I had held on to that hope of, oh, I'd be off the ventilator, yeah, get me off the ventilator. You know, you said he was gonna be off it. If I had held on to that rather than accepting that today is ventilated and tomorrow is ventilated, and we just lived our life being ventilated, he would not have made up the climbing wall, he would not have learned to swim, he would, and all that, you know, all that concern and risk. And but you know, he's living his life. And I am I am his parent and I am responsible for that. And I am me and his dad are more than happy, more than happy with our life that he has got a little brother, we have got a wonderful family and and friends around us, he's got fantastic school, fantastic local support systems now. You know, the key people that are in our life with Spiritual Team, Community Nursing, the people that get it are the people that have been on this journey with us for the last five, six years, and they get it. And Great Army Street, I can I they get a good press from me because they are phenomenal. They've supported us everywhere, every step of that way. And that acceptance is the way you move forward. It really, really is. And if you need to talk to somebody about it, if you need to have counselling, accept it and have it, you know. I have I've never had that, although I would, I'm in a place where I would like that. And I will have that at some point because I've got a lot of trauma from that beginning with Henry that I know I haven't dealt with, but I deal with it by talking about, I deal with it by talking about it. I don't bury it, I will talk to you about anything because it's happened, but I can't change it. And if I let that influence my day-to-day and influence my future, that will hold all of us back, and I'm not gonna let that happen. I'm just grateful for what we do have. I work really hard for it, and so does my husband, and and so does all the family, you know. Grandparents are in fantastic, and the care team that we have and funding that we have, you know, but it's really even now, it's still really hard work to make all of it happen. But I think I just like a challenge. I think I'm that kind of person. I just like a challenge. Yeah. But hopefully this will help people that are struggling with that challenge or struggling just to do the day-to-day. I really do hope it helps.

SPEAKER_01 17:01

Anything I've said and yeah, I'm sure it will, Siobhan. And and you're very generous, sort of giving us that insight into your life and and when you're saying, you know, you're welcome to to get in touch with people. I mean, we we've got social media channels which we'll keep an eye on when this uh podcast sort of goes out there. And yeah, it's very kind of you to offer to help other people who are in that situation. So yeah, we'll uh we'll definitely keep in touch. And as I said to you before, I mean, I'm sure this will help lots of people in in lots of ways. So you've been really generous with your time, really generous with those insights into your family, and uh really appreciate your sort of honesty. I'm sure that'll really strike a chord with people. So thank you so much, Siobhan, for taking the time out. Really appreciate it.

SPEAKER_02 17:41

More than welcome, more than happy um to help, and thank you so much for having me.

SPEAKER_01 17:46

No worries. All right, take care.

SPEAKER_02 17:48

Bye.

SPEAKER_00 17:55

That concludes our four-part interview with Siobon telling us about those amazing insights into her life with Henry and the rest of her family. Uh, it's quite inspirational listening to Siobon talk, and it's very clear the sort of drive she has to do the best thing for a child. And I really hope that any of you in that situation will find this interview series really interesting and really helpful in knowing what's out there and hopefully finding a few levers for how to make things happen if you need a bit of help getting the right package for your family member. As ever, everything that you've heard is our own opinions and doesn't necessarily reflect the organizations for which we work. Please like, comment, and follow us on our various social media channels, and you can find out lots more information for patients, families, and healthcare staff on our website, which is tracheostomy.org.uk. Thanks for listening and look forward to seeing you next time. Bye for now.