NTSP Specials (Season 2): Brendan and Helen

Helen is a community-based SLT who looks after children with complex needs, including children with tracheostomies. Helen works at the Vale Federation- a group of special schools in Aylesbury in the UK. 

Brendan and Helen discuss practical advice of where parents should start in their efforts to find local support once they're home from hospital with a young child who will have on going complex needs. Helen outlines the support available from schools (for school-age kids) and Health Visitors (for pre-schoolers) and the GP and the Paediatric services. Importantly, Helen discusses what help could and should be available, and how Helen and the team at the Vale Federation deliver that support - essential listening for parents, families and staff in the sector.

--------------

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.

This is the only podcast to bring you literature reviews, hot topic discussions and interviews with healthcare staff, patients and families.

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. 

Most of our content is supported by videos. You can access our training videos and resources for Basic Care, Emergency Care and Vocalisation & Swallowing. Download and print bedhead signs and emergency algorithms from our resources.

Transcript

SPEAKER_01 0:07

Hello and welcome to another special interview for Tracky Talk. This time I'm talking to Helen who is a speech and language therapist who works in the community with children with complex needs. So Helen's got a unique position where she does a lot of clinical work but also she works behind the scenes, helping patients, families and children access education but also access the care that they need. So Helen gives us a fascinating insight into the work she does but also the services that are available for children who have complex needs, which includes those obviously with tracheostomies. So I hope you find this interesting.

SPEAKER_00 0:49

So I am a speech and language therapist and I work for a small federation of special schools in Buckinghamshire. Part of my job is clinical, and I'm also the team lead along with my job share partner for a small team of speech and language therapists. We're not NHS, so we are employed directly by the school, and we're part of a multidisciplinary health and therapies team based in the school. So there's us, there's physiotherapists, occupational therapists, school nurses who are contracted in from the NHS, and we have a music therapist as well.

SPEAKER_01 1:26

Cool. Okay. And how much of your job is sort of clinical doing the speech and language interventions, how much is everything else?

SPEAKER_00 1:34

That's a really good question. It fluctuates a fair bit, and I am very lucky to job share the team lead role. So the two of us do often sort of balance it a bit between us. My speciality is dysphagia, eating, drinking, and swallowing. And we do find that the workload sort of fluctuates through the year, particularly around the winter months, for example. On paper, I'm 40% uh clinical and 60% management. Um, but I I definitely find that shifts at some times of the year. And um yeah, we we are lucky we've got quite a lot of uh autonomy and flexibility within the within the service to to be able to shift things around uh so we can we can kind of be flexible to what what's going on for the for the kids and for the young people.

SPEAKER_01 2:19

Sure, okay. And you know, when we were um talking back at that conference, it's very clear you've got a really good multidisciplinary team sort of set up, and that's something we found in tracheostomy care, like you know, it is essential really. But um, I was really interested that sort of team that you've got together. What what what sort of services can you provide for the uh the people you look after then?

SPEAKER_00 2:42

So within the school, I I think the thing that we do really well is an integrated therapy service. So when we have uh we're we're a primary and a secondary school, so we have kids. I think our youngest, uh the youngest we've ever taken is three. We do take a couple of nursery age, but usually they're they're from early years. Um, and in special schools, they stay with us until the year that they turn 19. So they're with us for one more year. Um, and in that time, the therapists who are working in the school, we can really work in the classrooms with the children. So we're not taking them out for intervention, they're not needing to get picked up by their parents and taken to hospital or taken to clinic. Um we uh and we don't even, to be honest, take them out into a therapy room or a clinical room. Most of the time, the work that we're doing is in the classroom alongside the teachers. Um and the teachers are a really key part of that multidisciplinary team and the parents as well, of course. Um, so one of the one of the main uh ways that underpins how we work is all of the pupils who are with us, they'll have an education and health care plan, an EHCP. Um, they'll have their long-term outcomes in there, both for their education and their health and their independence. Um, and we'll meet once a term as a multidisciplinary team with the teacher, and we'll work out what are we really going to focus on for the next term that that's gonna make the biggest difference to that child or that young person. And then we'll work out what's that gonna look like in the classroom. So we can be in the class, for example, if we've got a pupil where they've been nil by mouth for a long time and we want to introduce some oral tasters, um, we might do a little bit of work with them. Actually, that is a time when we might take them out and do a specialist group for a little bit just to see how they get on. Um but as quickly as we can, we'll have the TAs with them in that group. And then myself and my colleague who run those groups will be back in the class with the TA at snack time, at lunchtime, with the OTs, talking about how we can get that early weaning exploring of foods into their everyday snack routines, lunch routines, food tech, um, whatever it is that they're doing. So I think working in the school in that way it gives us a chance to integrate the service really well. Um, the downside is we're not a community service. So I have worked in in community clinics with the NHS, um, and then you're you're working much more closely with the parents. So we do work with the parents, but we don't work in the holidays. That that is a big downside of a school-based service. Um, again, especially with dysphagia, if it's the long summer holidays and there's a problem, where do the parents go? And we've had to work quite hard to put things in place so that the parents do have a place to go, but that involves kind of joining up with our local NHS teams and making sure they're signposted to GPs and that kind of thing. Um, and we do kind of bring parents in. So sometimes, for example, I might ask parents to come and join me at lunchtime at school so we can work on something together. But what I don't really have the opportunity to do is to go into the home and work with the parent uh in at home in the same way. Um, so I think that's that's kind of one of the downsides for a service that's that's commissioned in that way. And for kids who are under us, if they're under us for their speech therapy, they they won't have an NHS speech therapist as well. We we are there that the total of their provision. Um so it's not the case that there's a counterpart of me who's in a community clinic somewhere, kind of mirroring what I'm doing in the home. It is all through the school. Um, so yes, there are some challenges there around working with the parents. But you know, sometimes it helps if the parents are doing pickup and drop-off. We can catch them at the school gates. That's really easy. Um, we are there at parents' evenings, they can grab us there, and we do things like coffee mornings and parents' training so that there's opportunities for them to come in. But not all parents can if they're working, if the kids are on transport, it can be tricky.

SPEAKER_01 6:40

Yeah, I was gonna ask you about parents' evening. It takes on a whole new dimension, I suppose, isn't it?

SPEAKER_00 6:44

Yeah, it does. Um, I mean, the way we work is we we say to parents, you know, we'll we'll always be there, not the whole team. Um, they'll they'll normally be a handful of us. Um and uh but if uh if we know a parent's evening's coming up, if we know a parent wants to catch up with us, we'll we'll normally make make use of the opportunity to book in and and have a time with them. And again, I I mean I personally I can go and chat with them in the teacher slot, and then that's really helpful because the parents got the the therapist and the teacher all together, and we can just chat about, you know, how is this going? What's it looking like at home? This is what we're seeing in school. Um, do we need to tweak anything? What are we happy with? What are we not happy with? So the other thing that we can do in schools as well is we we can do uh parent clinics. So I do a multidisciplinary feeding clinic once every half term, and the dietitian comes in for that. So she's an NHS dietitian, but um she'll come into school for the day. Um, we'll have a list of kids that where we'll meet with the parents if if needs be, she and I can pop into the class and see the kids together, um, just see how they're doing. Um, and we'll usually have a catch-up as well about kids on our joint caseload and just check in with each other.

SPEAKER_01 7:52

Right, okay. Yeah, that's really interesting. I mean, it's it's a very different way of working to people like me who are used to working in hospitals, I suppose. But it's uh yeah, it's really interesting. Um without sort of breaching any confidentiality, can you give us a sense of the sort of broad range of complexities that that some of the children at the school have?

SPEAKER_00 8:12

Um I I think broad range about sums it up. Um so we we are a school for um children and young people with severe and complex needs, which includes some really very complex medical needs. Um the majority of our cohort, I should say, are have have autism and learning disabilities, but we have a quite significant minority of pupils with um either sort of profound and multiple learning disabilities. So these will be pupils who are wheelchair users, they will be at a really, really early stage of their cognitive and language development, um, and very often they've got really quite complex medical needs. Um, we get sort of unusual syndromes, unusual genetic conditions, um children where we actually don't really know what's going on yet, they don't actually have a formal diagnosis at all. Um they may well be under tertiary centres like like Great Ormond Street or John Radcliffe. Um, and you know, sometimes a diagnosis might materialize when they're a bit older, sometimes it doesn't before they leave us. So yeah, we we do have have quite a range, and we do have some children who um are in and out of hospital um for for all sorts of things from from sort of operations, uh dialysis, um, yeah, a really wide range.

SPEAKER_01 9:30

Yeah, okay. And I know from our discussions you you do get uh the odd child with uh altered airway and and and and tracheostomies. So what sort of sort of planning uh do you have to do when you find out that uh a child with a with a tracheostomy is is going to be coming to the school in the near future?

SPEAKER_00 9:52

I think how much planning we do depends on how much notice we have. Sometimes they really do appear very quickly and very suddenly. Um luckily the the teachers at our school they've uh they're quite experienced, so they've kind of met lots of different uh kinds of medical needs over the years. In terms of a tracky, I think the the key thing is we need to get trained staff in place. Um sometimes that child may have uh continuing healthcare, a CHC we would call it, um, and or sometimes that kind of um that application for that funding might still be ongoing. So we might be writing reports kind of in support of why we think continuous healthcare funding is is going to be necessary or helpful for this child. Uh sometimes we're looking at training teaching assistants. Um, so the teaching assistants who work with us, a lot of them um have quite a health-based role as well as education. Um and I think within the speech therapy team, we'd be thinking about who's gonna take this child on. So I I've been working in special schools for 20 years, and in that time I've worked with two children with tracheostomies, one of whom um got decannulated while they were with us as well. Um, and on both occasions, actually, there were other members of my team who were better trained in tracheostomy and and and had more experience than me. So we kind of look within the team, what's the skill set and experience that we've got existing, who's gonna take that person on? Um, what additional training do they need? So for speech therapists, there are tracheostomy competencies that we'd be looking at, who's got what competencies and what does this child need? Um, what training might the therapist need? Where are they going to get it from? And I think what's really key for me, certainly with with all of the complex medical children, is how am I going to link in with their medical team in the hospital? Um, so I would be trying to find out who who's looking after them right now and making contact with that speech and language therapist. I'd want a really um thorough handover, and ideally someone who I can be reaching out to in the early days to sort of say, you know, this has happened, we didn't quite expect that. What are you that, you know, my thoughts of this, but I just want to talk it through with somebody who already knows the child. Um there's often not one right way to address uh any problem that that occurs in the community. It's really hard to predict um what is going to play out. You know, might might the child be one who who pulls out their tracheostomy, might there be somebody who doesn't tolerate the dressing? Um might there be another child in the class who who suddenly is really interested in this other child's tracheostomy and wants to touch it and fiddle with it. Um so I think it the first um few days and weeks, they're they're really dynamic. Um there's normally a lot of activity around the child, a lot of therapists in and out and and um you know, playing with the children, watching them, interacting with them and chatting to each other. Um and I think for us in those early days, having that um support from the hospital that discharged the child, it's really invaluable to help us just navigate the stuff that no one can think of or plan for. So I think it's the it's not so much the planning, it's having the things in place for the things that you can't plan for is is key.

SPEAKER_01 13:18

Sounds very Donald Rumsfeld. So the um the the frequency that that that you get children with with with tracheostomies, that sounds like it might give you a bit of a problem then that you you may have a gap where perhaps you haven't got children with tracheostomies.

SPEAKER_00 13:34

Yeah.

SPEAKER_01 13:35

How do you go about then accessing training for, you know, if you work out that is there like a a ratio or or a policy about how many people need to be trained and and and and and with the child? And how do you go about accessing training?

SPEAKER_00 13:50

Well, the short answer is no, there's there's not a policy. And I think one of the things that is tricky when you work in education, not in health, is thinking about the kind of question of who do we need trained in what? Should we meet a child with a tracheostomy and be looking after them in our school? That's not really something that ever sits at the top of the agenda of a of a head teacher. Um so a lot of what we do do is uh as part of the integrated service is sit on the school senior leadership team to try and kind of drive some of those policy um decisions and discussions and try and move things up the agenda a little bit more. And I think one of the challenges of working in schools is there can sometimes be a bit of a friction. You know, are we an education setting, are we a health setting? Actually, we're kind of both, um, and we need to accommodate both. In terms of what would we do to access training? I think I'm really fortunate to have really lovely close links with my local NHS service. I used to work in that team in the community service, so I very often reach out to them. Um if if I have a particular gap, um, less so for tracky because I haven't had it uh come across my path for a little while, but for something, for example, like video fluoroscopies, um they they consistently invite me to go and attend. And then when we're analysing the images afterwards, they'll sit down and do their analysis with me there. Um, and as a community therapist, that that's really valuable. So I think it's it's often finding the people doing the work who are willing to have you come along and tag along and and learn in that way. Um, I do, I mean, for tracheostomy, I would reach out to your your network and look at your e-learning and things like that. Um and I'd I'd go back to our Royal College as well. And we we do have a really helpful competency framework that you can just pull up and look at what's listed. When did I last do this? Actually, that's really been a long time. I'm gonna have to go back and either find some e-learning, um, find myself a tracheostomy mentor that I can hook up with somewhere in an acute setting who's gonna be able to um just guide me through this. Um and and within speech therapy as well, uh uh we're under HCPC, we we do have an obligation for for clinical supervision, um, which so I I already have dysphagia supervision actually from somebody who works at Great Ormond Street. So um there should always be somebody in place who's who's giving you that supervisory support as well.

SPEAKER_01 16:20

Right, okay.

SPEAKER_00 16:21

In terms of the training the other staff, the teaching assistants, it would usually that would fall to the nurses to do that, and they may well provide us with some training as well. Um, certainly our school nurse is wonderful. Whenever I've asked her, you know, can I please come along and and can you remind me how to do this or walk me through this? Uh, she's always really happy to do that. And they would be the ones who would provide training for things like the TAs. It might be the school nurses, it might be the community nurses. Um, it's it's it's not always set who's who's going to do what. Um, and I think sometimes that can be a bit a bit confusing for for parents who who's going to train uh my child's TA. And I think sometimes it does need a bit of phoning around and and emailing around to get a name of okay, this is the nurse who's going to look after the gastromy training, this is who's going to look after the tracheostomy training, this is who's going to look after the suctioning training. Um and I think for parents, yeah, it must be really quite bewildering actually to come home from hospital and and you're trying to, we're trying to form that team around them, and they're trying to work out who we all are and what our role is and how we can help. So I imagine the first few days and weeks must be quite a lot for them as well.

SPEAKER_01 17:37

Yeah, no, I'm sure, yeah. That I mean that's a consistent thing that we hear, you know, people and families are discharged from hospital and then it becomes right, one set of problems is finished and they open the door on a whole new world. Um I was interested what you said about the decision making um around where children are placed, and you sometimes get sort of short notice. I mean, could you just shed a bit of light on on how a child, say, with a tracheostomy or with with complex needs out in the community, how those sort of decisions are made about where's the best place for a child to go to school?

SPEAKER_00 18:14

So for a child with a with an EHCP, um uh and when there's a a question over which school will they go to, it will go to a panel, um, and the decision is made at by the local authority essentially where where to where to place the child. So um, you know, the idea is you you look at the EHCP. I I think one of the things that is really, really important that a child has a really good quality EHCP that really describes them so clearly. I I've you know, I've I've seen really varying quality of EHCPs in my time. And the the worst is when you have an EHCP that has kind of really generic statements, like, you know, this child is developing uh their comprehension or something like that, and you think, well, what does that mean? You know, can they understand single words?

SPEAKER_01 19:03

Helen to sorry to interrupt you, but so tell us how the EHCP gets sort of where does that come from? Who fills that in?

SPEAKER_00 19:10

So for EHCP, the there's a request made to the local authority for a child to um have an assessment. So the first decision that gets made is the local authority decide are we going to do the assessment? Yes or no. Okay. Um if the assessment is agreed, there's a time frame whereby that has to be completed. Um, and whoever is required for that assessment, so maybe a speech therapist, pediatrician, educational psychologist, whoever, there's a sort of collating of these different assessments and reports. We call them Appendix F reports because that's where they sit. Um, those reports all make their way back to the local authority and get put together into an education healthcare plan. The process it does have time frames in place, um, but I think some local authorities really struggle to meet those. Um I I think probably lots of people are aware from from the news and their own experiences that we that there there are problems in turning around EHCPs uh in a timely way because of uh staffing issues and and um you know, finding the services, finding the people to write the reports, finding the people to collate the reports, it can be tricky gathering all this information and putting it together into one document. And that document should then also give what is the provision that that child needs. And it's that provision element that often determines the placement. So, you know, what what level of therapy do they need? What kind of therapy and how much? What kind of support are they going to need in school? How much differentiation will they need with the curriculum? So often where they get placed, it can be linked to the child's learning as well. Um, you know, you you may well have a child with a tracheostomy with complex medical needs, but who is cognitively absolutely fine. And then that child would be far better off in a mainstream school where where they're learning the national curriculum, they're with their uh peers who are um who have the same learning as them and uh they're getting that that kind of experience. Um if a child comes to us, they may have a trachee, but they will never only have a trachee. Um they they will have lots of other other things going on as well, um, not least in in their cognition and learning.

SPEAKER_01 21:20

Okay. And it it's the educational health care plan that sort of determines those sort of needs, I guess, is it then?

SPEAKER_00 21:27

That's right. So that that EHCP should describe the child, what can they do, what do they find difficult, and what do they need? Um and that need then becomes the provision. And essentially it should be when you're reading the provision, you can kind of picture in your head, okay, what kind of setting are we describing here? Are we describing a really differentiated curriculum, small class sizes, a specialist teacher, a high level of adult support and integrated therapies, or are we describing a child who needs mainstream curriculum, opportunities to interact with peers, um, but with reasonable Adjustments for for medical needs. Yeah. That's a very simple uh example. They're rarely so cut and dried, but it it should be when you read the EHCP, you can kind of picture what what are we talking about here.

SPEAKER_01 22:13

Okay. And so when so they I'm just picturing a scenario then. So the the local authority have got this report in front of them and it's very clear, let's say, uh what uh needs a child has and and and what provisions we need to put in place. Is that decision then about where a child goes? Is that all tied in with a funding package or is funding separate to that sort of care package?

SPEAKER_00 22:39

The funding is tied to the provision.

unknown 22:41

Okay.

SPEAKER_00 22:42

So um and and where the EHCP really uh, as things currently stand, I should say this is obviously we are in the middle of the the SEND reform and the white paper, so um I don't know exactly how things will look in future, but as things stand at the moment, if something is written in section F of the provision, then the local authority is legally obligated to provide that. Um so for example, um we the the children who come to us and the young people who come to us, they will have a certain number of hours of speech and language therapy that they need to receive over that academic year. Um and the funding for the service that I work for uh and for the therapists that we employ, that is paid for by the provision that's in that EHCP. So if we have lots of children um uh, for example, to use dysphagia, we've we've had a significant increase in the number of children with dysphagia needs um over the recent years, uh, as we've had these more complex children coming through into school. Um, and so we've had to increase the number of dysphagia trained speech therapists, so that means more specialists. Um and similarly, we've needed more specialists in autism and complex behaviour and things like that. So the the funding is linked to the child and to the provision. Um and that that is what should pay for whatever package that child that child needs.

SPEAKER_01 24:05

And is there a capacity in in your school? Because I mean that I'm sure there is, but I mean uh it I I know from uh talking to a few people that that it capacity seems to be uh negotiable sometimes. I mean, how does that work? If there's a child that would really benefit from your setting and your services, do you just have to find a way?

SPEAKER_00 24:26

There are enormous capacity issues in specialist settings, all specialist settings, not just complex medical needs, all of them. Um, and and again, you know, who knows what will come out of this uh send reform uh and the impact that will have on capacity. Um if we have a child who really, really needs the place, the local authority can uh because we are a maintained school, so it depends on the nature of the school. Um we're a maintained school, so if the authority um place a child with us, there's there's not an awful lot we can do about it. We we accommodate them. Um that sometimes is problem that's problematic. Um, I mean, we we do have schools uh uh up and down the country where there's a lack of physical space um for for classrooms and and um especially uh in special schools, you often need not just a classroom but lots of small kind of um breakout spaces. Uh you know, again, thinking of a child like a tracheostomy, for example, where might they go for suctioning? Where might they, thinking of children with more complex medical needs or disabilities, where are they going to go for their personal care? That that's not gonna look like a normal school uh toilet. Um and often the children with complex learning needs, they tend not to learn so well in a whole class group. They need things really, really differentiated. So we often split our classes for teaching. Um, and then it's it's kind of how do you do that? You need spaces then if you're having lots of small groups, where where physically do you move those small groups to um that has enough physical space? Uh it sounds really silly, but things like wheelchairs, standing frames, hoists, um, these are large pieces of equipment that that need large spaces. And, you know, to go back to your question about a child with a tracheostomy, they come with quite a lot of equipment. Um, you know, and we haven't yet had someone who's still vented, but if you had a child who was vented, they would come with yet more equipment. Uh and and just the physical space demands of that, um and and the build the building that you're in. Uh, you know, often the buildings might be quite old, they haven't been updated for a while. Um, I will say though, we we're usually quite good at making it work, as are most special schools in my experience. There's a usually a willingness, but it it can really take some some thinking.

SPEAKER_01 26:53

Yeah, yeah. I mean, that that's a bit like the intensive care services that I'm involved in, where you don't get much choice and all those infrastructure problems that you uh refer to. So, yeah, that that that's very familiar. Um, so that's a really useful uh insight, uh Ellen into the the the role you have and and and the the sort of landscape for for for accessing your services. Have you got any sort of top tips uh for parents say who find themselves looking after a child? I I guess for this podcast, a child with with tracheostomies, but but uh more broadly uh children with with sort of complex needs. So at the start of that journey, is there anything if you could sit them down over a coffee and and and explain to what was going to happen? Are there any sort of top tips that you would have for those parents or or the child, even if that was appropriate?

SPEAKER_00 27:43

Yeah, that's a really good question. I I think the first thing I would say for parents is get your own support network around you, your your friends, your family. Um, and then I I'm I'm thinking of a friend of mine actually who who has a daughter would send and um uh our group around her, and uh she sort of has us in different roles for different things. So, you know, I I will go with her to the annual reviews. She has another friend who she takes to medical appointments, you know, work out what you need, or almost build your your home team. Okay. And then in terms of it, I think the biggest challenge, like I mentioned, is is going to be tracking down and finding your professional team. Hopefully, they'll also be trying to find you. But I think really don't be afraid to pick up the phone. I think sometimes parents say things to me like, you know, oh gosh, we know we we know you're really busy, we don't want to be a bother, we don't want to be a pain. Please be a bother, be a pain. Um, it usually uh ironically makes my life easier if if I'm trying to work something out and then someone goes, Oh, this person's on the phone for you. And I'm like, oh yes, that's the person I was trying to find. Phone calls or all emails, um, but do reach out directly. And even if it's not the right person, you know, if somebody emails me and it's clear they've they've come to me and they should be to my colleague who's in the special school in another part of Aylesbury, uh, we're we're all connected. We know who each other are. So even if you reach out and it's the wrong person, they should be able to connect you up. So I think unfortunately, you will have to actively seek these connections. I think our our system in this country is not at a point, sadly, where everything will will slip into place. It that just doesn't happen. So I think be prepared to to pick up the phone and do some active chasing. And then you'll usually find, or almost always, in the team around a parent, there'll be one professional who who really connects with that parent. It it becomes really clear. Um, and then you know, you you can have that person be your your sort of ad hoc lead professional, they they can be your go-to. And um, you know, I do that role for a couple of parents in the school, and they often say, you know, it's it's far more helpful just to have one person that we can channel everything through. Um, because I'm not sure is this an OT question or a physio question or a speech therapy question. So it just comes to one person first of all. We know what each other do. We can sort of say, okay, that yeah, I can really hear that question. I don't think I can help you, but I'm gonna pass that on to this person and and they'll get back to you. So I think uh as a parent, really don't be afraid to to reach out and and keep asking. I'm sorry, because I know that places a burden on the parents that at a time when things are already difficult for them at home, be prepared for some of that. And and I think that's why I perhaps started with having that home team around you, because maybe some of that you can delegate. Um you know, certainly I've I've made phone calls on behalf of my friend when when she's just exhausted and she's got too much on. And it's like, yeah, I can I can ring round some people and track that down for you and come back to you.

SPEAKER_01 30:47

Yeah, that's right. That's really good advice.

SPEAKER_00 30:49

Yeah, yeah. Don't be afraid to to delegate.

SPEAKER_01 30:52

Yeah, I mean, I I know from working in the NHS, and you obviously know from from your role what a mess it can be, despite everyone genuinely trying their best to sort this these sort of things out. And and what we're trying to do with these podcasts and conversations, just try and shed a little bit of light on on what's out there so that parents and and families know what they can access, and you know that it is a shame that that there's not just a one front door you go through and everything's on the other side. Um for that initial part of the journey when you know you you were just saying there you've got to make some phone calls and you've got to try and sort these things out. So if if you're a family who've you've just like landed at home with with, if you like, a sort of medical care package for for a child just to keep things ticking over at home, what are those sort of first steps? Is it is it ringing the local authority and saying, right, what do I do? Or is it getting in touch with uh community speech and language therapy teams, community physiogs, you know, it it it who exactly should should parents be trying to uh get in touch with, do you think?

SPEAKER_00 31:59

Well, ideally, there'll have been in an ideal world you'll have discharge letters that say who you are being discharged to. So I would say, first of all, look through your discharge paperwork, look for names and phone numbers on that paperwork and start there. Um, because that that hopefully is the team that's waiting to receive you. That will almost always be an NHS community uh team. Um where it gets more complicated in schools is is like I described, we're we're not an NHS service. So often hospitals don't know we exist. Um so often the the children who come to our schools they're discharged back to the community NHS. Um they do then generally find their if if anything goes to that community team, they will reach out to us. Um so I would say start with what is on your paperwork. If you've got a school age child who is already in school, call the school. If it's a mainstream school, call the head, call the Senko. They may not know. In fact, in all likelihood, they won't know, but I would hope they would know who to ask and who to call. Ideally on your behalf to save you a bit more legwork, but I I would even if they're making the phone call for for you, I would say get the name and the phone number of the person who they're calling, because sometimes it takes more than one call, and sometimes you might decide you want to pick that up yourself just to keep things moving. If the child's in a special school, call um call the head or the assistant, you know, sort of call the the person who's in charge operationally of the school, it's it's usually the head or the deputy. Um and they should be able to signpost you. If the child is in early years, I would maybe suggest the health visitor as the first port of call. If they're in a nursery, uh nurseries are really complicated because a lot of them are private. So I think the nursery may well not know unless they happen to have had some experience of that before. So I think um if if it were were me and I had a child who was early years, I'd probably start with my health visitor um and with their support, kind of work my way out from there.

SPEAKER_01 34:05

Okay, that is really useful, Helen. That's the sort of uh practical advice that the people are really desperate for, you know, when they've got so much stuff uh going on. So um yeah, I'd I I like ending with some practical uh take-homes. So yeah, thank you so much. Well, I mean, it's been fascinating learning about the work that you do and uh how you provide that sort of service for the for the complex kids that that that you look after. So, on behalf of everyone that uh accesses your services, thank you for everything uh that you do. It's been really interesting uh talking to you, and uh, we hope that people find this useful.

SPEAKER_00 34:41

I hope so too. Thanks very much, Brendan.

SPEAKER_01 34:43

Alright, thanks, Helen. So thanks to Helen for that really interesting insight into the work that she does, but also her explanation of the landscape that uh parents, patients, and families have to try and navigate to get the services that they need for their children. As ever, the views that you've heard are our own opinions and they don't necessarily represent the organisations for which we work. Please like, follow, and comment on our social media feeds, and there's plenty more information for patients, families, and healthcare staff on our website, which is tracheostomy.org.uk. Look forward to seeing you next time. Bye for now.