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SoWhoCaresAnyway E18 Seeing People for Who They Are · SoWhoCaresAnyway

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Hello and welcome to So Who Cares Anyway, the podcast that shares learning, innovation and ideas from the world of health and social care and beyond.
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My name is Ruth Germain and I'm inviting you to join me each week with my inspirational guests to hear about who cares.
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What they do, their passions, their knowledge and ideas, and importantly, the difference they are making to improve the health and wellbeing of people in our communities.
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I consider each of my guests to be incredible individuals working with people in new ways or with key messages to share.
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People from healthcare, social care, the voluntary sector, community groups, and more.
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To join me each week to find out, so who cares.
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Anyway, to find out more about me, who I am and what I do, please head over to my website, www.reflectiveruthconsultancy.com,
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where you can also catch up with previous episodes and read my blogs.
Hello and welcome to the next episode of So Who Cares.
Anyway, and in this episode, I'm really delighted to be joined by Rachel Healy and Aaron Banno, who are both, learning disability student nurses in their third year from the University of Winchester University.
We're actually recording this on international nurses down to celebrate and talk a little bit more about learning disability nursing, what it is that they do, and what difference they make.
So I'm gonna start off just by asking Rachel if you would introduce yourself a little bit further please.
Yeah.
Hello.
My name's Rachel.
I am, as you said, third year learning disability student at the University of Winchester.
I started my career in 2012, so 13 years ago, and that was, my godmother worked in a school for children with learning disabilities and I, uh, wanted to go and see what she did.
She inspired me.
She's absolutely just one of those people.
She's amazing.
She's a foster carer, has done her career all of her life.
So I went and started working in the school, and then took over running their respite service.
They had a kids club that was in the school, that supported about a hundred, 150 children with varying levels of learning disabilities, autism, physical disabilities, so took over running that for a few years.
And through the school, through the respite service, I met a couple of families and one in particular.
Is a family.
We have two children called Sophie and Tom, and that is where my real journey into nursing began.
They had a condition called Sanfilippo Syndrome.
So I supported the family for 10 years.
Sanfilippo is a degenerative condition, so the Sophie and Tom have now passed away in the last couple of years.
And through my journey working with them, I met so many different health professionals, being physios, OTs, schools, you name it.
These, the people were involved with, their family.
And one of those people was the nurses, the hospice nurses, the children's nurses, community nurses.
And I worked alongside those, especially around the end of life and palliative care.
And that's where I got my inspiration.
I thought, this is where I see my next step.
I've done this care work now for 10 years.
How do I further what I already have the knowledge of and the skills to do, but now in I need to understand why am I doing the things that I'm doing? I know how to do 'em.
I've been trained.
This is how you use a suction machine.
This is where, how you use a peg.
Why am I doing that and how am I doing it? And I'd done a lot of teaching around Macon and communication because that's how the children that I'd supported had, used communication aids.
So I just wanted to put all of those skills that I'd developed and learned over the years into a new career and thought nursing is where I want to go.
These hospice nurses were just the most amazing people to me, to the children, to the family and everybody.
So, yeah, looked into nursing, looked to stay local because I'm a bit of a mature student.
Didn't wanna go traveling around the country and doing the whole 18-year-old going out clubbing and all of that.
Malarkey at university did not interest me whatsoever.
So looked at Winchester, and the courses that they ran knew nothing about learning disability, nursing, I'd never even heard of it before, but saw what they did and went, that is a bit of me.
That is exactly where I see myself being, is putting all of the things that I love into one course.
That's quite Inspirational hearing about your aunt and then your own care work and, you've obviously got quite a lot of experience from that, but that took you.
Into this next step to think, right, let's actually go and do something more and ask those questions, why am I doing what I do and how do I do what I do? So you actually were asking those questions already, even before you came into the profession, which is really lovely to hear.
Absolutely.
Yeah.
Okay.
So I'm just gonna go over to Aaron now and ask Aaron, would you introduce yourself as well, please? Sure my name's Aaron Tabo.
I am also a third year, learning disability nursing student.
Okay.
But I'm actually on the apprentice route.
So my kind of career started, originally I did a degree in photography and after I'd graduated from that, my wife and I moved to London and is when I was, looking for work in London.
Basically, I found a care home for adults with physical disabilities.
Started working there and that kind of became more of a passion for me.
The photography side kind of fell, by the wayside, and I was more interested in supporting, these people.
From there I progressed up through to, senior support worker, and then my wife and I moved back towards the Southampton area.
From then I found a care home that, supported people with, learning disabilities.
And I worked there for about five years.
Progressed up to like deputy manager there.
So it was while I was working in the home for people with disabilities that we worked through Covid.
When we came out the other side of Covid, I'd seen what the pressures were for care homes during that time.
And it was actually during that time that I worked with a community lung disability nurse.
She was doing, medication monitoring for one of the, I.
People in the care home.
And she actually sent me an email suggesting that I went for a role within the community team, which was associate practitioner.
And it came at the right time for me.
I was looking to come out of the health and social care system and looking for something different.
So I went for that role.
And I got the position, as associate practitioner for the community Learn disability team.
And then from there they put me onto the apprenticeship to do the, learn disability nursing.
Wow.
And mean a different story.
But not unsimilar.
It was through the work that you were doing previously that you came to that, community nursing and working in that way.
Really interesting and it seems to be the work that you were doing that has driven you into, or that passion and then you've thought about, what's the next step that's brought you into learning disability nursing.
So I know that you both, obviously your students, so you haven't got that final role yet, but I think you're both working in different places.
So I wonder, Rachel, if we go back to you again, if you'd tell us a little bit more about your student nursing career or really anything around that sort of learning disability nursing.
That you found useful or interesting? Yeah, so I, I think we are really fortunate at our university that our lecturers, we've got three amazing lecturers and they come from a very mixed, fields well, they're all learning disability nurses, the three that mainly support us, but they've all got a very different career and background.
So honing in all of their information, they have so much to teach, but also we get some really amazing clinical placements and a real good mix of experience, because it's only since 2018 that learning disability nurses have been trained as the same as the other fields of nurses.
And I think that's sometimes something that's not really very recognized when we're out on placement.
So I've met a lot of barriers, especially going into, placements that are typically adult field or children field specifically.
That some of them have just point blank, refuse to.
Assess me because they're like, we don't know how to support a learning disability nurse.
And it's not until the university go in and say, actually, now that's changed.
And not even recently, 2018.
Now we've moved on quite a bit since then.
That we, are being trained the exact same with all the same proficiencies, all the same skills.
We just get that added bonus of, it's really specific around supporting people with a learning disability.
But those skills are so transferable.
So for example, I had a placement in intensive care.
Those skills that you would use for someone, the communication, and advocacy you're using for someone who might be experiencing delirium or people with a new tracheostomy that don't have their speech back yet teaching them some different, how to use some makaton or different communication.
So I've been met with a lot of barriers in practice at advocating for why I deserve to be in it.
In a clinical placement and even recently going into some others that are predominantly places that have people with learning disabilities, but the setting mainly has adult or child nurses.
I still find myself really advocating for why I'm there and what the difference to my role is.
Yes, I understand that we don't get that broad experience of hospitals and, the other hands-on stuff that you might expect of a nurse.
We might not be exposed to that as much, but we do get exposed to so many other different things that, we can tie in.
But yeah, the placements have been so varied.
So I've done three in the community.
I've done two in hospice care and then I did one in custody, which for me was so out my comfort zone.
As I said before, I've worked with children my whole career.
Children mostly were very complex, found in multiple learning disabilities.
And then I went to custody and went, oh my God, what earth am I doing here? And it was very out my comfort zone.
But still a really interesting place to be and to see how many different areas we as a learning disability nurse could work in.
That the options are endless.
And we often have this conversation of, should we be going to learning disability specific placements and just learning, the real skills of our trade, or should we be going into all of these mixed practiced fields? To a advocate for why we should be, it's the best advertisement for our field is to go into these hospital settings and go, look, this is what we can do.
This is what we're capable of.
And they go, oh, didn't even know your field of nursing existed, but now we know you'd be quite beneficial in a hospital ward.
So there's pros and cons to both, I suppose.
Thank you, Rachel.
So Aaron, I'm just wondering what your experience is, so I wonder if you'd like to talk about that as well and maybe even reflect or concur or if you've got any other thoughts then Rachel has as well be really interesting.
Yeah, definitely.
So I was, as Rachel was talking, I was nodding along and, smiling at what she was saying.
So for me, where it's the apprenticeship, it's a little bit different.
So my placements throughout the course are half within my home base, so half of my placements have been working within the team that I normally work with.
And then the other ones have been away and I've, but mine, mine have been, rather than where Rachel has had some experience in more clinical settings, I, mine have all been learning disability focused.
So, I worked with a, social care company and I've worked within a, learning disability, forensic ward, mental health forensic ward as well, a medium secure ward.
So I still had, there was clinical elements to that placement, but it was still more focused on the learning disability side and mental health side as well.
So I can really see the benefit of.
For me an apprentice, working within the team where I'm working now and getting to know the procedures and getting to know how they work and the people there is beneficial because essentially they're training me to work within that setting, at the end of the degree.
Interesting what Rachel was saying about the fact that we as learning disability nurses are trained, with the exact same proficiencies and skills as the other fields of nursing.
And if you think about it, any adult nurse or a child nurse is gonna have the same skills.
And then when they graduate, they're going to go and work in it in a specialized area.
Somebody might go and work on a cardiology ward or respiratory ward or something like that.
So the expectation or the bias against Learn disability nurses thinking that, oh, you only work with people with learn disabilities.
You're not gonna, you don't need to have all these additional skills, isn't really there because everybody gets trained to the same level and then after that you go and specialize.
So, it is interesting thinking, thinking about it that way.
I think that it's definitely beneficial to have learning disabilities in as many placements, areas as possible.
Within some hospitals in the local area, we have the learning disability liaison teams who are learning disability nurses based within the hospitals who come and support, when a patient with a disability comes in and they can help around communication and reasonable adjustments and making sure that the patient gets the right sort of care.
But often they're not doing the sort of hands-on work.
They're there to support the nurses working on the wards.
Thank you Aaron.
So I just want to, before I carry on, just go back a little bit and just for the people for listeners, it's just talk about the two roots you've already mentioned into nursing, so perhaps it's quite nice that you're both here, but just touch upon that.
So the route that you are doing Rachel, is probably what's seen as the more traditional route.
A university direct route, which people would know and understand from anybody they know that's going to university.
Although obviously you have clinical placements, whereas Aaron doing the apprenticeship route, it's your employer that's putting you through.
So presumably when you talk about having some of those, placements with your employer You do a majority of your learning there, but then we'll go off to other placements to do the rest of your training.
So I think that's where they slightly differ.
I don't wanna dwell on that too much, but I just wanted to bring that in for anybody who is listening to understand.
And that's of course the same for any, nursing field.
But I think what's really struck me here is, there's a couple of things.
One is that actually nursing is so broad, so that when you're talking about some of those barriers that come up, the roles that we see in nursing just vary massively and everybody's expects nurses to be clinical in what they consider to be clinical.
So doing dressings, supporting people in an ITU unit with their clinical care or things like that.
And I think in covid that was really marked because if you were a nurse, everybody was assumed that you were and many, many places.
If you weren't in that direct clinical role, you were asked to cover that because obviously that was what was needed at the time.
Lots of people doing very clinical skills, but actually.
Nursing is as broad as it is long.
I always think it's one of the most amazing professions.
I certainly didn't think that mine would go where it's gone.
And actually for the last 10 years, I still register as a nurse, but within leadership and research rather than that clinical.
So what is clinical work and what is nursing and is it always clinical? I think there's a lot of questions around that.
The other thing is you talk about placements and having those very placements, but actually people with learning disabilities can be anywhere.
So as you said about Aaron, just now you have the learning disability liaison teams and they will be there to support people when they come into hospital.
So yeah, there's a few little reflections there.
As I was going through, I was thinking, well, this is quite interesting So I wonder if either of you want to come in and just talk about why it is that we need learning disability nurses, because I think a lot of people might understand from what you've said, how we, can go in and support and do some of those other things that perhaps other nurses aren't able to do.
But what is it? Why does somebody with a learning disability, need their own particular nurse, is what I'm wondering.
I think between me and Aaron, we could talk for hours of the examples that we hear from our own personal experiences, but also our colleagues and our university colleagues about the discrimination or the inequalities that people with a learning disability face in practice.
We could talk for hours about it, but some of the examples that spring to mind is, for one of my placements, I was working with a lady who was in her mid thirties who had been refused by her GP surgery to have her cervical screening, and their justification was two things.
One, she's not sexually active 'cause she's got learning disability, therefore doesn't need a screening.
Secondly, they're not wheelchair accessible and they don't have a hoist, so therefore they couldn't physically get her on a bed.
That in itself is just bonkers that they can justify their rationale as to why someone wouldn't be.
Allowed a screening.
But also another one example that a colleague of ours gave recently was, Aaron, correct me if I get this slightly wrong, it was a gentleman who needed a hip replacement.
Am I right in thinking? Yeah.
Yeah, that's right.
And they refused to do it 'cause they said they don't do hip replacements for people with a learning disability.
Again, where's the evidence? Where's the justification? Why is that even a reason for not giving someone a health treatment? So, much of our role is just going, a lot of it's fighting and just going, well, why on earth would you feel that way? And I know now we have got the Oliver McGowan training and that is so educational, but is it actually being used in practice? Are people seeing it? Learning from it and going Oh, yeah.
And recognizing their biases that they've got.
And I don't personally think it's, I mean, some settings are better than others, but there's such a massive role for us in the hospitals especially, and in those clinical settings just to make those reasonable adjustments.
But that does become a lot of what the learning disability nurse role is.
It's just making healthcare equal and equitable for everybody.
Yeah.
I think that's what it is.
We have a, particular understanding of ways to problem solve, I think is, what it comes down to.
If for that gentleman with the hip replacement, it was seen as it would've been, I believe it would've, it was seen as a lot more work for them to put in place things to facilitate him to have that operation.
Whereas for us, we look at those things and think about things we can put in place before the procedure or what happens around the procedure to get him ready and to get the staff ready for the different things that he might need.
So yeah, it's problem solving and advocating for people with their own disability to ensure that they get the same equity of healthcare as everybody else.
And it's mad because you just think that should be an absolute right.
You, wouldn't even question if you have this conversation with everybody, they go, well yeah, of course, that's absolutely common sense that nobody should be treated differently.
But that's the realistic side of what's happening.
Yeah, we see it, every day.
People with learning disabilities being treated differently, and that just seems so unfair.
I had a family member at one point who, fell over and ended up having to have surgery on their hip, and they were refused rehab afterwards because they had a learning disability.
Which, hearing what you're saying, I'm sure there'll be many people out there that think, yeah, I've seen this and I've heard this, and it does seem discriminatory and unfair.
So really what you talked about here is the advocacy that you have in a role and the problem solving ability.
So the problem solving, I suppose, will be something that's always there.
But I wonder in the ideal world, should you really have to be an advocate? And what might that ideal world look like? I think a lot of that goes back to the question of, with this big decline in learning disability nursing, and we know that, we know there's not many of us, we know we are in a retiring generation, there's gonna be lots of LD nurses that are going to, leave the field of nursing soon.
Should there really be a learning disability nurse? Should all nurses not be absolutely able to support somebody with a learning disability? That would be the absolute ideal.
But it just, it isn't the case, is it? Unfortunately.
But in an ideal world, nobody should be facing that inequality and there shouldn't really be a need for us.
But that's ideal, isn't it? And I don't wanna get rid of my, future job, so I do, we do still need us.
I think there is an argument, and we spoke about this recently as well.
There is an argument that very, very specific, provision for people with own disabilities is always gonna be needed.
You think about things like, IST, which is the intensive support team, they focus and help, people with, severe behaviors.
That challenge, that, that kind of specialist knowledge is, I think it's always gonna be needed for that sort of patient group.
But the general sort of things that we've spoken about, like being able to implement and think about reasonable adjustments, or being able to get the communication right to be able to make sure that, the person, understands what's happening when you're in, a clinical setting like a ward.
And also that, they understand, what procedures might be needed to be done to them.
Those kind of things.
I think that stuff can be taught to the other fields of nursing to make sure that is happening in any sort of, setting clinical settings or community settings.
And it's, I've just made a note.
Oh, we've spoken about the fact that the learning disability to nurses and our people on our course, are trained to the same level as the, adult nurses and the child nurses.
But there are elements of the other way round the ad on our course, the adult nurses, child nurses, mental health nurses are taught about learning disabilities as well.
And that having us all working together means they get a better idea of the kind of things that the different fields can do.
Thank you.
So that's interesting, thinking, actually, do we need, learning disability nurses, you're questioning that I wonder if that is quite so achievable ever though, because there is so much work to do the one thing that I've learned,, over the years is there's more than enough work to go round.
And if there's.
I think there is a place, Aaron, some of the services that you work in, particularly, that you are employed by, and I know Rachel, you would've been to some of these settings.
They are for people with learning disabilities and supporting them.
So presumably those people would be far better off being learning disability nurses.
So I wonder if this is about, yes, everybody should have a better and increased awareness and probably not just nurses, probably across all of our, allied health professionals, our pharmacists, doctors, as well as social care, workers as well.
Social workers or other people working in the community.
How can we up people's understanding about how to talk with and communicate and engage with somebody.
Who has a learning disability and ensure they're included in as any part of a conversation.
But I think there probably still is work to be done where people do need that learning.
Disability liaison team.
I know I spoke to somebody once and they were doing, when people came into hospital, they were doing some of that one to one support that perhaps, if somebody knew they might not have to do it, but if somebody else knew, another clinician understood that they might not need to do it.
But actually it takes time.
So maybe some of that is about being able to sit down and spend that extra time with people and do some of those things.
So I think it might just be that there needs to be a shift in what's being done.
So there'll always be advocacy, but not advocacy to the extent that perhaps you are talking about at the moment.
There'll always be problem solving, but maybe some of those problems were solved.
There'd be other areas of supporting somebody with learning disability.
So there might be other work there as well that you might be able to do.
So I suppose the ideal world in my mind, and you can come in and challenge me, one of you in a minute, is that everybody understands it, but actually the minute that it goes beyond the time or the capacity or what needs to happen, then that might be where, or in an area where there's perhaps people with learning disability being supported, that might be where people such as yourself, step in.
You are both nodding.
Yeah.
What springs to mind there is again, it recognizes the need for us, but I think it, like I said earlier, there's still that little bit of, I'm gonna say discrimination against the understanding of what it is we do.
And, we recently, we did a taster day in university where the LD nurses, I say ld, learning disability nurses, ran a day.
Showing what we do, day to day to the adult nurses.
And they did the same for us.
We did a, to and from, and it was really, really interesting.
But one of the things that came up was how varied even the role of a learning disability nurse is from area to area.
So, two of our colleagues were talking about a big part of it is desensitization for someone with a learning disability, say going, give the example of an injection or having to have bloods taken or something like that.
So the community team might go in and do this big piece of work at trying to put in all of these measures to make that a calm and as easy a process as possible to get bloods taken.
But then they might not actually be able to take the blood themselves depending on where the area is, because we're not recognized as having that skill.
So therefore, one colleague was saying, oh no, in our community place, in our community.
Setting, we would do all that desensitization work and then we can take the bloods at the end of it, and that should be, the success that comes at the end.
Another setting is, oh no, the learning disability nurse says, no, no, no, that's, you are not skilled.
You can't do that, therefore, that you still have to do all that work, and then they have to go to hospital and have the bloods, and then it might not even be successful because you're putting that person out of the environment they're comfortable with the person that they have become comfortable with.
I've kind of forgotten where I was going with that and what the train of thought was in the first place and what you were asking.
I went off on the tangent.
Sorry.
Well, that, that's, that kind of, leads into something that I was gonna say as well though.
But I think that's absolutely right and that is one of the biggest, one of the biggest challenges that I face within my current role as well, is doing that desensitization work.
And then when it actually comes to taking the bloods, I'm not able to do that.
So that, yeah, we have to arrange for, a district nurse maybe to come to the home or go to the GP surgery and those sorts of things.
And I can support that by being there with the patient and being a friendly face, but I'm not the person actually gonna going to be doing the procedure.
So that, that's another sort of barrier there.
That kind of leads into, what Ruth was saying as well, and I think it's about for people with a learning disability, they put quite often the challenges to their communication and their understanding because of their own disability are what.
LD nurses and people working within that field we try to get to understand that, to provide the best care for them.
So when I'm doing the desensitization work, that could take up to, between anywhere between six to eight weeks of visiting a person once a week to get to know how they best communicate and what their under level of understanding is for the procedure and the surrounding things, for that.
So I get to know the person and then I'm building a, procedure and a way of working with them to best suit their needs.
And that's the kind of thing, as Ruth was saying, somebody on Ward, a nurse working on Ward potentially, or, in the community, when they've got eight, patients to see in their home throughout the day, they're not gonna have that same level of time to get to know the person in that way and provide that sort of person-centered care for them.
So it's getting that balance again, isn't it, of.
Being able to do the procedure, being able to, get the clinical work done while also getting a good person centered and therapeutic relationship for the person.
Yeah.
So it sounds like there's a certain amount that definitely there'll always be for learning disability nurses to do.
And it might be that you build that up, Aaron, and actually in the long run then the nurse might be there with you and build that same rapport and be able to do that.
But then by that time there'd be some, as I say, there's always enough work there'd be somebody else that you can go and support and start to build that level up with to make sure that works.
So I think there's always a space for the work to be done and I think you've both given some really good cases as to why we need to have you, and people like you as well.
One of the things that we spoke about at the beginning is actually there isn't enough learning disability nurses, and we didn't actually say at the beginning, but we actually met.
Because we are both, all three of us have been invited to an NHS England event talking about learning disability nurses and the fact that there isn't enough on, on what can we do.
And one of the things that came up there, there was a number of things, was perhaps we need to rebrand it.
So I don't know if we particularly need to rebrand it, but my question is, do people actually really understand what a learning disability is? So I wondered if either of you want to talk around that and perhaps your own.
And I can see that you are both really smiling, especially you are in there, there's obviously some misconceptions around then disability, what that is, what that means.
So yeah.
I'm just gonna pass over to you.
Do you wanna come in there, Aaron? Yeah, sure.
So it's one of those things that has, been around for a long time and there's been different, words used for a long time as well.
And, we change our vocabulary as we learn about things that happened in the past and recognize that maybe that's not a, acceptable way to talk about things.
For PE for learning disability, I think at the moment there is a lot of information about neurodiversity.
You have, we have people talking a lot more about autism and about A DHD, and also learning difficulties as well.
There's lots of these words out there that kind of, that sound similar, but they do actually mean different things.
So a person can have autism, which isn't a learning disability, but you could have somebody that has a learning disability and autism.
So, it's very difficult for people that don't work within the, within that setting.
I've had conversations when I've been out on placement and with on bespoke maybe community teams, and I've had this exact conversation as to to what the difference is between, a learning disability and somebody that has autism.
So it's being able to, explain and, get that information across to people.
To, improve that understanding.
So, Rachel, do you want to come in and just perhaps give a little bit more about what that difference is or explain that a little bit more for people please.
Yeah, I mean, I think it's such a big question.
It's really hard to define what a learning disability is because the way that it's officially diagnosed is by iq.
So I dunno, Aaron's obviously got much more experience in the community than I have.
But my small experience I did have during my placement, there's a lot of toing and froing from different services of, oh, that person meets the learning disability criteria.
However, they're a person with the learning disability who's having a bit of a mental health crisis, therefore back them off to the mental health team.
Then the mental health team says, oh, but they've got a learning disability, so back them back, and then they just end up sitting in between with no support really.
And the same, I've met a, wonderful nurse who was the liaison nurse for three hospitals in the local area because.
They only funded three between one nurse, between all three of them.
And she left her job because she was so overwhelmed, understandably so.
But her referrals that she was getting from people were covering everything from a learning difficulty, which might include something like dyslexia, dyspraxia, or things like autism, which understandably, all of those people might need a level of reasonable adjustment and they might need support.
However, in the honed off job that the liaison nurse was doing, she did not have capacity to be able to support every single person.
So had to bring her criteria quite strict back to learning disability.
But again, now not everybody is getting a diagnosis or more people are getting a diagnosis.
But how do you seek what level they do support? Uh, what level of support they do need? Sorry.
Otherwise our job might be endless really, if we open that up to everybody.
And like you said, they were talking at, the NHS England event that we went to about rebranding that name.
And as Aaron said, I think learning disability nursing in itself has been, the name has been changed every 20, 30 years to, to meet up with what the current correct vocabulary is.
So I can't remember what it was before learning disability nursing, Joe would be the best person to ask of the history of, but I think they qualified our lecturers as mental handicap nurses or something.
Yeah.
So, you know.
Yeah, that's what I was gonna say.
Yeah.
Times are changing massively.
So now the next conversation is.
Do we include people with autism, people with neurological disabilities into the learning disability realm because it does fit.
It is people that we support and we see every day, and so many of the people that we do support have other comorbidities.
It might have epilepsy and have global development delay and have other things that.
We are very knowledgeable about and know how to support, but don't really sit within our expertise, so to say.
But it's so much of what we do.
So, yeah, that's the next big conversation.
Do we rebrand ourselves to make learning disability nursing more attractive appeal people more, appeal more people in.
I dunno.
It's very conflicted, to be honest.
When they, when Jonathan Bebe, came in and spoke to us in our university, the room was completely split in two.
Some people were really, really for it and going, yep, I can get on behind this.
And other people were really protective A of protecting their role as a learning disability nurse, but b of protecting people with a learning disability and not getting lost in that massive void of, if we open that up to everybody.
'cause the talk was of having neuro disability nursing, which would cover so many more people, do people with a learning disability, then get lost within that.
So the room was completely split.
Did you wanna come in there? You're gonna add in something? No, that's okay.
I was gonna say what you said as well that it feels like to rebrand and change the name.
Opens up, as you say, I feel like it almost muddies it a little bit because you get all of these other things that at the moment have a defined sort of name, but they have a defined name, but as you said, they fall between two posts sometimes as well.
So without clarifying and saying, yes, this is a person with autism, they're gonna go to this team and can be supported by that.
This is a person with a learning disability.
They can be supported by this team.
When if you open up the branding to neuro disability, it's a whole lot of more teaching and, understanding that we're gonna have to give to the wider population and within the healthcare setting as well.
So thinking about that, Aaron, I just want to, you just spoke about that education to the wider population and to, the healthcare team as well, because it's quite obvious from some of your stories earlier on that the healthcare team don't understand why they need you.
I think probably people with learning disabilities probably understand why they need you the most.
But there's other people out there as well who might be coming into the profession or working with you, or even just a general thing around, what is learning disability that the general population needs to perhaps understand as well.
So as you've mentioned about that wider education, Aaron, I wonder if you just want to expand on that a little bit more Please.
Sure.
So, I know about people with learning disabilities and I understand it through working with them, working in the care home and working, with the community team and doing the learning disability nursing as well.
And I think you often find people working within this, field of nursing or within social care for people with learn disabilities, have a maybe a familial contact or somebody else that has a learned disability.
For myself, my sister-in-law has a learned disability.
And you or some somebody else, maybe a friend, a family friend, and, through getting to know somebody with a learned disability, you understand what support they need and how you can better support them in their lives or allow them to be as independent as they need, things like that.
But obviously there, is a big section of the, population that don't have that sort of connection.
So it's recognizing that there is a gap.
Some of my friends don't know really what a learning disability is.
They don't, see people with learning disabilities about, but they don't really know what my job role is.
So I'm talking about what I'm doing and that they're finding it quite fascinating 'cause it's completely different to what they see as a nurse working in a ward as we've talked about before.
So in terms of educating and getting, the word out there for learning disabilities and learn disability nursing, I think there is a big way to go there.
Are there, as we've said, there's, still people that don't understand what it is.
Doing things like this, talking about it on podcasts and talking about it in forums you mentioned the NHS England, event that we went to.
There was a lot of people in the same room that Rachel and I have been to conferences recently within the last year.
And I've been to other things where you see the same people in the same rooms talking about the same things, talking about how do we improve the numbers, how do we improve the knowledge about learning disability nursing, and we're having the same conversations, but there doesn't seem to be much movement on it.
So I'm pleased that we've been given this opportunity, on your podcast, Ruth, to be able to talk about these things and, hopefully improve understanding in that little way.
There's lots of things that we can do that I guess is having a presence on social media and sharing things out and those sorts of things can help improve it.
But I guess it's just continuing to have the conversation and continuing to talk about people with learning disabilities so they don't get forgotten about.
Yes to just add to that, I.
Almost wonder whether people listening who are very experienced learning disability nurses will be going, why are two students who have not even started their career yet? The ones talking about our jobs and our future.
But I think that's very much it and our head of Learning disability nursing at the University of Winchester, Joe Welch, she's amazing.
And she's been a massive advocate for, she won't mind me saying that she's worked in her job for 40 years and she's done so much during her career, but that's why now she keeps inviting me and Erin to these events that she has been part of for the last 40 years.
'cause she's going.
I'm part of this generation that's leaving soon I'm gonna be retiring and it's now the future nurses that need to be taking over.
And that's where, like Aaron said, we've been lucky enough to be invited to a few of these meetings and conferences now.
And you see those same familiar faces.
There is a lot of conversation about the future of nursing, the future of learning disability, nursing, where that will take us.
And I guess just by us being able to be involved in those conversations.
I will not lie, when we went to that meeting last week, we both left going, oh my goodness, what on earth have we let ourselves in for? This is so overwhelming.
But I think it's starting those conversations, starting the thought processes of actually now that we are going into these careers, which for me will be in the summer for Aaron.
Being an apprentice will be next year.
But he's already in his workplace being able to start this.
It's just now going, right.
We know all of these things are going on in the background.
We know all of the fight that people have been putting up for 40 years and it's still seeing a decline in learning disability nursing.
How do we make a difference? And I don't think at the moment we've got the answer to that, but at least now we're in the know to start questioning why that is.
And we do take that back to our other colleagues at the university and have those conversations.
Part of that being, this year we hosted the Positive Choices Conference in Winchester and we got such amazing feedback.
And the main part of it was the fact that we had people with a learning disability involved.
And that was something that, they said that they've not experienced before.
So for example, the Macka Song Choir.
A Choir, which is all adults with learning disabilities that sing and sign, they're absolutely incredible.
Go and find them on social media.
They will just overwhelm you with happiness.
They're so amazing.
But we had them and, charity called Time to Shine, which have shiners, which are adults with learning disabilities, looking to get some work experience.
They came and stood on the stage chairing that conference with us, because for us it was, why on earth are we here talking about people with a learning disability and what we are gonna be doing for them? Without them, they should be the ones up on the stage talking about this.
And the feedback that we got afterwards was, wow, thank you so much for including us.
And that just blew our mind that they didn't, that wasn't even an option.
So yeah, I think that's, as students, that's just where we are now at going into the future of learning disability nursing, of how do we work with people with a learning disability to make sure that our career is, gonna be here for the years to come and for more people to come and join learning disability, nursing, or whatever role or title it may have in a few years.
Might not be LD nursing, might be neuro disability nursing, but we still need to have all of those people involved in those decisions.
And I guess it just opened our eyes to going, how on earth do we make that happen? At the moment, we don't know.
Thank you Rachel.
And there's so much there.
And yes, you're talking about the fact that you're student nurses, but the fact is you are both the future of learning disability nursing.
And I have got another podcast planned with two other people that I learned, disability nurses who, were both there.
So both Daisy Hack and Daniel Marsden at some point are going to be on a podcast.
But I just seen you there and as we say this international, nursing day today, I thought what a great time to just, let's bring you in your training nurses, your the future, just to, to celebrate and put that forwards.
Daniel's and, Daisy have also done a conference that I went to with where there were people there with learning disabilities that were helping to organize that event.
And for me that was a first, but it really fits with a lot of what these podcasts were about.
And you've actually mentioned it there, Rachel, about doing things with people.
Seeing the people as assets.
I think I mentioned earlier on, and for people that are listening, you were both nodding away when I was saying probably the only people who really know why they need learning disability nurses are people with learning disabilities because they can stand up and say, actually what Rachel done for me, what Aaron done for me, what, whoever else that other person is, what they've done for me, the difference that made.
They can explain that.
Or maybe their carers, depending who they are, but they are the people who can advocate and talk about what it is and why it's that they need you.
And the difference that you make.
And sometimes that might be even news to you when you hear people saying, oh, the difference that you made to me.
But it's always really nice when you hear that, but.
It's talking about seeing them as assets.
And then you talked about that, doing things with people, which really fits in with Adam L's episode called hashtag do with and as Adam says, everybody needs to start taking do with approaches and seeing people as assets, whoever they are.
So maybe in the future it is about more doing this with people and drawing out from them some real stories and to talk about the difference that it makes, which is certainly somewhere in the long run that I'm hoping that.
The podcast goes.
So we've been on talking for quite some time.
So I think what I'd like to do is just to come over to each of you and it might be that you come have the same things to say.
What are your key takeaways or points that you would like people listening to think about from today? So they don't have to be big or anything major, but it might be that you have two or three and they might be directed to different people.
So it might be that you're thinking almost strategically on nationally this is what we need to do, but actually locally or for the people with learn disabil disabilities, this is what needs to happen.
So you might have a couple of sort of levels that you might want to speak on.
Um, so I dunno which one of you wants to go first.
It might be a case of Hugh Mutes first.
That's such a massive, point and I'm just trying to think to summarize in a good way, if Aaron, you've got anything you want to actively say first? No.
That, that's why I let you unmute first.
I knew that was the case, Aaron.
Um, I think we have to be so careful not to be looking like we're, unappreciative of the other fields of nursing.
I think we've just spent a lot of our experience really advocating for ourselves, and I know so much of our role is advocating for people with a learning disability, but justifying.
Why we exist, why we're doing what we're doing.
And I get told quite often, oh, what you do is amazing.
I couldn't do what you do.
All I'm doing is supporting people who have a learning disability.
And a lot of the children that I have cared for in the past have quite complex needs.
I think we live in a generation now where it's very acceptable.
People aren't discriminated against generally in the public, but we still live in a population where it's.
Don't ask, don't stare, don't.
I encourage the opposite.
If you see somebody and you have questions, a lot of the time the carers, the parents, they would encourage you to come and have a conversation because that's their life.
And they are as much wanting to advocate, as everybody else.
And like I mentioned Sophie and Tom earlier, their parents are the most amazing people.
I wouldn't be where I am in my career now if it wasn't for their family, because they spend so much time advocating for their children and sharing their kids' story.
And a lot of that was around how healthcare could have been either improved or the things that have gone well, things could have gone differently to have just made that little bit of difference to their lives and their family's life.
And I was really lucky that I got to be part of sharing their story at Positive Choices and at other conferences we've gone to.
And I would just really encourage anybody to, if you have questions, go and ask the right people.
Asking someone to their face, what's wrong with you? That's the most, I get that all the time.
What's wrong with them? Nothing's wrong with them.
What's wrong with you? But I think just having the courage to ask the correct questions.
Ask about what we do, what we support, and just keep sharing that message.
I'm very heavy using social media to share the work that I do, the Macon that I do, because I'm really passionate about it.
And I also really encourage my friends to come and introduce their young children to the kids that I support, because I think just that exposure at a young age as well to somebody who's in a wheelchair, because that for children is again, quite overwhelming to see adults who are in a wheelchair or have all of this equipment with peg feeds and suctioning and oxygen, that's scary to adults, but especially to children.
So I always really encourage my friends to come, bring your kids along for a day out.
Come teach them how to talk to a child who can't talk back to them.
And they'll find a way and they always do.
So that's a bit of a jumbled message, but hopefully it got a point across.
There was some brilliant points in there.
Rachel, I just want to ask one thing.
You said so often people about asking the right questions and people say What's wrong with you? For the people listening and for myself, just so educators, what would be the right question? Ooh, that's a very hard question because I don't know how you approach that.
I, don't know the answer is the honest response to that, because nothing is wrong.
I think it's the word wrong that you are implying that.
I don't know.
Aaron, any thoughts can see your brain wearing? Yeah, I'm trying to think.
Maybe just coming up and saying, hello, my name's Rachel.
Would you mind if I ask you some questions? Because a lot of the time that's where it just gets miscommunication, is that when you come in and say what's wrong, it feels like it's confrontational and it feels like they're being discriminative.
Whereas to just say, would you mind if I just come up or Would you mind if my child just asks you a couple of questions because they want to know what that is? That's, you know what that piece of equipment is.
What? I don't know the answer.
Just starting the conversation.
I don't, I think that's right.
I think there isn't one question that there you can, ask somebody to get all the information about them, I think just as Rachel says, opening the conversation in a friendly way would be really beneficial I think.
Thank you Aaron.
And I think what really came through actually, and I was thinking as you were saying it last week's episode, which was about community-based assets development.
It's a slightly different take on things, but the episode was called, and it's something that Cormack Russell talks about all the time, is start with what's strong, not wrong.
So actually I think that's what we're talking about, Aaron, for those key messages.
Before we finish, is there anything else that you'd like to add at to all place? Sure.
So I've written down that we, I don't wanna come across as preachy and I think I've definitely, Rachel and I don't really want to come across like that.
We don't wanna come as, telling people a lot about what's wrong.
And, we have spoken quite a lot about the frustrations and the limitations that we experience, with it within the role.
But there's also a lot of really, really good work and a lot of really good, things happening for people with learning disabilities.
And I think my message is to, not lose sight of those people.
Basically not lose sight of the people with learning disabilities.
'cause they're the reason why we're working in this, in this field.
They're the people that we want to support.
And that there are lots of changes that are happening currently with, implementations.
To do with, budgeting and finance and things happening within the NHS that are gonna make it harder for people with disabilities and, people that need that, that are more vulnerable, just generally.
So it's keeping in everything that we are doing, keeping them at the forefront of it and making sure that we're doing everything correctly by them is the message that I have.
Thank you.
That's brilliant.
And I think that not losing sight of people is another really important message as we finish today's podcast.
So thank you both for joining me.
It's been really insightful for me.
I've learned so much.
It's increased my understanding.
So thank you.
And, I'm sure it will do for our listeners as well.
Thank you so much.
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