Hello, and welcome to This Is Your Journey.
This is the Specialist Learning Disability
Service podcast.
And I would to share with you a bit of a reason
why we were really keen to do this podcast.
, I'm a specialist learning disability nurse,
and my role focuses in on mental health for the young people
who access our service.
I really want to celebrate our service, our team,
and the young people, families,
and carers that we work with.
This podcast enables us a different way in which we can hear
from the stories
and the journeys of the professionals
who deliver the service,
but also to hear from the young people, families,
and carers about their experiences
and really passionate about mental health
and know that our young people can struggle
with their mental health
and access to services sometimes can be
a bit more of a challenge.
hopefully this podcast will tackle some difficult
subjects and will help provide some resources and support
and advice from people who've accessed our service
and from the professionals who support the delivery.
I want to welcome to our podcast, first of all, ,
Bev Leach, who is our Queen's nurse, operational
and joint clinical service lead
for our specialist learning disability service.
And she's also our professional lead in learning disability
nursing in children and family health.
Devon, welcome Bev.
Thank you for our first coming onto the first episode.
We are going to have an informal chat
and toll, be able to learn a bit more about Bev
and her role and what brought her into her specialist role.
I'm going to first of all ask be, could you share with us
how you came into nursing
and what led you to specialize in particular in learning
disability nursing, please.
Yes, of course. , , I was in six form
and we had to do some, , placements
and volunteer placements.
And, , my placement was in a local special
school in Herefordshire.
And I did some one-to-one work with, ,
big young people in the school and absolutely loved it.
, had been thinking about going into teaching,
but then enjoyed that much, looked into nursing, ,
and then found the Learn Disability Nurse course,
which I had no idea existed at that time.
I started my training in Exeter, ,
and then went back up to Har to complete
and, , diversified a little bit in about four
or five years later and started training as a midwife
and did some work in, in midwifery.
, but my pool was always back to learn disability nursing.
, , I came back into nursing.
, and especially with them, I think comes from,
and I think especially when I was doing the midwifery,
that you realize not everybody knows
and has that same knowledge that you have.
when you are working with young people
with learning disability or adults with learning disability,
you naturally have skills that come out
and you think everybody else has those skills.
And then when I was working in, , midwifery
for the short time, , I realized that not everybody does.
And that's a really important skill to have.
And I, and I loved it.
It, I, it changes over all the time.
There's a different, no day is ever the same, ,
and you get such, , such good feedback,
such good, great responses.
, yeah, that's what, that's what .
I wondered when you were saying the important skills
working with young people with a learning disability,
why do you think it's important, Bev?
What is it important to have those
Skills when you are, when you look back
and you think you expected, as you said, naturally, people
and professionals would word
my gut instinct is to say you need to have a sense of humor.
And I think that's, that is about how we work
and you are often do
that's causing really difficult challenges, situations.
Yeah. , all involved in things
with young people that they're finding tricky,
but they'll have different responses.
And I think humor helps young people
and children to not feel isolated or alone
and you can share experiences.
I think for me, humor is,
and I think most learning disabilities nurses I meet have
got a very unique sense of humor Yeah.
And work in a very different way.
, I think one of the other skills is,
is having patience, having understanding, ,
looking at things holistically.
I think that's a great skill that learnability nurses have,
, people that work in that profession , that you,
that there isn't a set process.
You can't say with this problem, you do A, B, and C.
You have to say, , we're gonna try this
and if this doesn't work, we'll try this.
And, and it, and it has to be different
and you have to be flexible.
Mm-hmm. , and you're adapting constantly your
communication style, your communication, , process, ,
and, and, , generally how it works.
And I think that takes patience.
It takes understanding. , yeah.
many other things come into play with that. yeah.
Thank you. Awesome.
I was thinking you also, your title is
that you are Queen Nurse
and I'm wondering, our may not know
what the title is of the Queen nurse.
Would you be kind to share with us
and again, what inspired you to
become a Queen's nurse, please?
Yeah, certainly. a Queen's nurse is a community nurse
or a health visitor or midwife.
And it's usually someone who can demonstrate a high level
of commitment to patient care, , or leadership.
And, , you have to go through quite a rigorous process
to evidence that you can, you can show those skills
and show that, , work through throughout your career.
, and I wanted to do it
because there are the not many learning disability nurses
that have the queen's nurse.
Yeah. , and I had a colleague
who worked in the community children's nursing services,
awarded Queens nurse and nag and nag me
and said, yeah, you really need to do this.
, and going through the application, as tough
as it was, it highlights,
, for want of a better word.
And I know you love the word journey, love
Journey, love journey. But it, high journey,
It highlights that journey.
It highlights what we've done, what we've changed,
all the things that we've done, , through the service.
, , yeah, it was, it was a great thing to do
and I thought when I put the application in, oh,
it's in now, and , I don't mind either way,
what happens, but then it became super important
and then when, when the outcome came and you get email
and that horrible moment when you're , or is it Yeah.
Did or not. Yeah.
And, , it was, and it, and I was yeah, super proud.
Super proud. It's that it's fantastic
and, , makes you, you're proud to be a nurse.
Absolutely. Lee, I was thinking we've got a student, ,
learning disability and neuro diverseness coming on in one
of the episodes, and you were saying that
learning disability nurses don't always put themself forward
in the Queen's nurse role,
and that's why you also think it's important.
Do you think there's any reason, in your thoughts, why
the learning disability nurses don't always put ourself
forward as a Queen's nurse?
I think learning disability nurses usually
they've got their heads down
and are getting on with their roles.
And I think that doesn't, that's not
to say the nurses don't do the same.
Absolutely. Yeah. , but I think that's, and
and they don't often recognize what they bring to a role
and the uniqueness that they have.
, I think it's also the community aspects,
the learning disability, learning disability nursing many
years ago was based, they were based in institutions
and based in hospitals, there was a different form
of nursing and this is very much a community less award.
, and I think,
and I do think it's about knowledge as well.
It's about knowing that award is there
because I must have met until I had spoken to the colleagues
that I knew I'd knew very little about it.
That's very good. I don't, I'm not sure
that it was as well known.
I think it's getting there now.
We've since got, ,
two more learning disability nurses on a team
that got, which is fantastic.
, yeah, I think it's, it's knowledge,
but I think it's also that confidence to say, I'm,
I'm doing something and this is what I'm doing.
, and, and being really clear with the impact
and the value that has.
Definitely. Can you share with everyone
what is our service in, again, your, through your eyes,
what would you, how would you describe anyone who's tuning
in maybe for the first time about
what is the specialist learning disability service
and what makes IT specialist, would you say?
. the, the service in, , in formal terms,
the service supports children, young people
with a moderate family and disability
and part of child and family health dev.
, the service, I'll say a specialist in, in,
because it supports those young people in
many elements of their life.
there's not one area that we will, ,
necessarily focus on,
but we have specialist pathways within the service.
we will work with children, young people
that are having difficulty with sleep, for example,
I think can be a major concern.
And we know the impact sleep has on,
on health and wellbeing.
, we've got a pathway that, that has a focus on, ,
positive behavior support, which is a framework that, ,
supporting people that may present with behaviors
that would be, , of concern and may be distressing.
, we have a psychological
and mental health pathway, which as , you're part
of, , which will look at the mental health needs
and the emotional wellbeing of our young people.
, and we also, our mommy's the missing one.
Oh, the health. Yeah.
we also focus on the, the big thing with nursing health.
Yeah. But we will look at the health needs of children,
young people, and again, it, it is about adapting.
each one of those pathways will adapt the delivery
of the service offer and, , look at how we,
, might support that individual.
And again, there's no set way,
we have to adapt all the time.
, yeah, there's that.
The specialism I think comes from not only do we understand
and work with children, young people
with a learning disability and understand the various
approaches and communication needs that might be needed,
but we've also got that added
expertise in those other areas.
Thinking of that,
how long have you been in the service?
I appreciate we are now CFHD,
but in respect of the team, how long have you been
In the
Jen? It , we gonna
pause a moment.
Yeah, of course. Thank you.
I didn't put, I thought I should have put a sign.
Tissues are more important. Someone needed tissue.
Tissue, yes.
Yeah, don't worry about it. , yeah,
you , you carry on.
It's absolutely fine. Yeah, no worry.
Thank you, Jen. , we're jumping back in.
I was asking Bev. . Oh, are we recording again?
Yeah, you're good. Well done.
saying about how long you've been in a team,
be please that.
Oh, lots and lots of years.
That's fine. Lots and lots of years. I,
In my current role, , probably
15 years within Yeah.
With the different organizations that we worked with.
And before that I was a team lead and
before that I was a community nurse.
Yeah. I've worked within
children's community learning disability services, ,
since , 2001, ,
which makes me sound very old, which I am very old.
, and I started as a community nurse.
, and then, I say, team lead
and I went into this role.
I've seen the different transitions
and the different, , organizations
that we've worked within,
but we retained our community team, , at, well,
it enhanced the community team that we've got.
, , yeah. Lots of years. Yeah.
I was wondering, 'cause you said about adapting
and thinking back, I think I started this, , started
as a learning disability nurse in 2016.
And I think that, you said,
the service needs have changed
and we've adapted to meet the needs
that we hear from the children, young people and families.
And I wondered, how do you see from your experience
that the services changed
and to meet, you said, the children
and young people's needs?
I think it's unrecognizable now to how it ended.
when I, when I started the role, there was
predominantly learning, discussing everything.
, and I think we have one clinical psychologist across,
, , and with a combination of what the children
and young people and families need,
but also of what is out there in the far as recruitment.
'cause again, we've diversified and expanded.
I think there's, there's some areas that we needed
to get other professions in.
we expanded the clinical psychology. Yeah.
Then we've got occupational therapy,
speech and language therapy.
We've got some fantastic support assistant
that are working alongside us.
We've looked at the mental health nurse role.
, we school hospital admissions.
, and I think it's the changing face of
probably society, but also the services that are out there.
what we've ended up being is
very specialized in the areas that we work in,
but brought in other professions to enhance our offer.
The seen, , and the feedback we get from founders
and young people to inform that is, is hugely important
and gives us an idea of how to shape the service and,
and what's needed and to evidence what's needed.
, because I, as , I can't go up to some, to,
to my, , managers
and say, I needed this
profession and, and that's it.
I need to evidence because it's, it's,
, taxpayer money that we have.
it's about evidence in what we, what we need,
why we need it, and what's the
outcome gonna be for young people.
That leads me into, Dr. Paul Le,
the clinical psych principal,
clinical psychologist joint leads the clinical
service with you.
Could you share that you were explaining then a bit
more insight into your role about
what you do in partnership together.
You were explaining then about the evidence, you have
to be thoughtful in respects of funds and things.
it sounds you hear from the ground as us as workers,
children, families, what's the need and things,
and then how you evidence too.
I think it's, look, I think there's two elements
looking at the national picture.
there's national drivers always that will, ,
change the face of what we're offering.
, and there's also the,
the localities that we have to look at.
Devon's quite a rural community, you have
to look at , how do we provide the service?
How do we provide a service
that's accessible to families and young people?
we've got to look at, at how, where,
where everyone is space.
I think the way Paula and I work together,
I'm a nurse by background.
Paul is a psychologist by background.
we're coming at it from the same angle,
but with different training
and different, , experiences throughout the years.
And we, we bounce off each other and,
and sometimes we have, , discussions
and we disagree and then we work those out
and decide on what would be the best outcome.
And I think that it's a really healthy relationship
because I don't, I don't think to work with someone
that absolutely agrees with everything you say.
Yes. Particularly healthy. ,
we can challenge each other on
what we fill the service needs, ,
and the different experiences that we've both had.
And I think it, and I think it works really well.
, certainly the, the feedback that we get is it
that it seems to be appreciated and,
and people, , in the team have got a voice.
And I think that's super important is that, ,
that there's nothing that we introduced to the team that
we would insist on having apart from the,
apart from the obviously the
national drivers that have to happen.
Yes. I think any change in service delivery
or anything we do clinically, it needs the team alongside.
And that's super important to both of us.
And if we don't have that, , we can't deliver
because the, the,
the team have got to believe in what we're doing.
Absolutely. Thank you.
I was appreciating, you were saying about we've obviously
considered different disciplines coming into our service.
And again, thinking about where the need is,
thinking about learning disability nursing, we know
that Lord Darcy's report in 2024,
which was the independent investigation into the NHS has
highlighted there's a decline in learning disability nurses.
And I wondered what you think the impact is for that
costs our service and nationally seeing that decline.
I think it's, I it goes without saying.
I think that the impact is huge. Mm-hmm.
I don't think people or children
and families know they need a learning disability
nurse until they have one.
, and then they don't usually don't wanna let them go.
Yeah. , and I think I don't other professions know that,
which is I think why there's been that decline.
And then as soon as other professions or children
and family work rather than nurse, they,
they understand the value,
they understand what they're doing.
, I think what we've tried to do it is diversify in,
in some ways with other posts.
, things occupational therapies,
speech language therapy and, and psychology come
with their own expertise and then their standalone.
Mm-hmm. But I think what we've looked at is other roles
that could enhance the learning and offer.
And , in some ways it, it can work,
but it, it, it's really hard to replace those skills
and though the expertise that brings
and the passion, I think that's one thing, the learning
between nurses, they have this huge passion,
which is about advocating for, , young people.
And that's incredible.
And when you see it in action, even, ,
I'm looking at it operationally sometimes
and thinking, come on, we need, we, , there's,
there's other children meeting, we need to move this on.
And, and, , no, no, no, I need to do this.
I need to do that. And which is, which is great to see.
And, , I love that part of it.
It's, , it's challenging sometimes when
you're trying to manage waste.
Absolutely. No, I totally agree that, yeah.
We, I think that passion, you said it, the,
where we can see a justice, where
we come alongside families, children, and young people.
And you said, we know that for families
and children, young people learning disability,
it does feel it can be a fight.
And you said, we come alongside
and it's difficult sometimes for us to be able, sometimes
to know when it's to step out.
you said, it's to real balance for yourself.
'cause you can always feel that
passion, the core of who you are.
Yeah. And then you said, you're having
to consider there is awaiting list, there is service
and we have to think about the other needs
of other young people too.
it's, it is difficult. It's
Balancing. Yeah. Yeah.
Yeah.
What's your hopes for learning disability nursing?
What do you hope for us for the future?
I think in an ideal world,
they would increase the training places. Definitely.
I agree. I think that would be my, my hope
that they cognize south here would be great.
Yeah. Yeah.
The Southwest is, I think that in the, the north of England,
they, they have more training places most definitely.
But the Southwest , they don't.
And, , I don't want that, that area of nursing
to disappear because I think, , there's been many
ways in, in even in the media with, with things that when,
when they haven't had their specialist
and it goes dreadfully wrong.
Yeah. And, , those, those reports, the,
the various panorama programs, et cetera, they show that,
that there is that need for that specialism
and that understanding and that compassion.
And, , my hope would be that those skills are recognized
and they build on that as opposed to
let it go into decline and then,
and then wish that hadn't happened.
'cause I think that's what will happen. I think if,
if it declines, they'll, they'll look back
and think, oh gosh, in 10 years, 10 years length, ,
we have this wonderful nursing all disappeared.
Yeah. And that's what we need.
, , that would be my hope
That could, leads me into thinking again about Lord
Darcy's report.
, and it highlights for people with learning disabilities
that they continue to face health inequalities.
And I know as a service we continue to strive to challenge
and bridge those health inequalities.
When you think of us as a service, where do you think
that you see that we are addressing
and continually raising
that these health inequalities aren't?
. You mentioned that the link nurse
Role. Yeah.
, I think there's, there's, there's ways.
I think o over the years we've tried to highlight the health
and qualities and we're constantly
shouting from the rooftops about the, the need
for same access for our children
and people as, as other young people.
And I think, , being completely honest, we know
that the world out there is, is challenging at the moment.
And I think funds are tight everywhere.
I think that, that there's a level of being, ,
realistic about what, what is out there.
what we've, what we've looked at doing from CFHD LD
service is, , developing post
because for adults with, for example, they have, ,
something called the liaison nurse in based in hospitals
that supports hospital admissions
and, , planned, usually planned admissions.
, but we don't have that for, for young people in depots.
what we developed was a link, this role that
supports planned admissions
or planned appointments for young people
where things reasonable adjustments.
Yeah. if they need to know the room they're going into
for a procedure, for example, , she will go ahead
and take photographs of the room, of the anesthetist
of all the things that are likely to happen
to support that young person.
it's not scary.
it's not as, , frightening to go into, ,
and also do things ,
they're first on the list, they're not waiting.
it's that, it's that type of thing that we're,
they're constantly looking at.
Yeah. But for our young people, it's also being able
to access, , the same things as,
as other young people of the same age.
I think that's where we come to, to, again, to advocate.
Because quite often they're dismissed
because maybe their communication needs are different.
they can't access, , the, the same,
, services.
Well they can with the support. Absolutely.
I think for us it's we're, we're constantly being
this fight with health inequality.
I, I don't see that disappearing, I have to be honest. Yeah.
I think we will always have to do that. Yeah.
, but support that for,
for families and, and young people.
And obviously adults is, as they get, they get older.
But it's, it's looking at, we know that the,
sadly the statistics for adults with learning disability
and paral parental death
because the, the health needs are not met in the same way
as the rest of the population.
we have to do our bit for children's services to try
and work with things the annual health checks
with hospital passports to support young people
to have an understanding of their own health ly,
but also the people that are working
around them and supporting them.
And I suppose the Oliver McGowan training is living for
'cause you said, when we train
as learning disability nurses, we are learning,
you said about where the communication challenges
are, how to adapt.
But if you haven't had that exposure
or understanding, then when a young person does present
several behaviors that can be distressing to the, the nurses
or other professions don't know how to support
and work with that young person.
And then that causes those barriers
to having their health needs.
Absolutely. Yeah. Absolutely.
And that training, , is incredible for,
for professionals that,
that don't work within learning disability
and maybe don't understand.
I think it highlights what you can do.
And, and, and tiny things
sometimes can make such a difference.
Yeah. And how such an impact.
, the training has been Yeah. Really, really valuable.
Thank even you said, if you go into a hospital
and you haven't been there before
and your understanding, isn't it,
it's really scary when people suddenly are trying
to do things to you.
you said, taking photos, you said,
having the health passport that families can share that
before and go, this is what I need, it's how I communicate.
And things. you said, having that discussion,
could they be more a personal list you're not waiting?
'cause we know when we are waiting for any appointment,
it really can be stressful.
Mm-hmm. you said, under the equality act,
us having some reasonable adjustments can
make a real difference.
Yeah. And I think it also prepares staff, I think.
Absolutely. Yeah. , for, for staff when they are in,
in the acute sites that may not work with
as many young people as we do with and disability.
Yeah. I think if we can prepare them to say,
if they, if they display behaviors in this way
or if then if they're acting in this way, it may mean this.
And absolutely. That's what's
happening for that in person.
Yeah. , because, , we assume
that everybody knows everything
and they, and they don't.
And that's why there's the various professions.
That's why there's very true.
I think it's also understanding that our colleagues
also need that support and not, not that assumption
that everybody knows the same, , ,
as we do. Yeah. With things.
Thinking back into your nursing, is there
a experience
or experiences that shaped you, that still drive you today
in that getting up in the morning, continuing
with your role despite the challenges that, ,
the world does face and in, , our work,
but is there things that you still go, there's,
I can remember from experiences?
Yeah, most definitely.
There is various ones,
but the, the one that stands out for me is I was, ,
working as a community nurse
and it, I was based, , in,
, Timson.
, and he had, I had a young person that I was supporting
who was experiencing quite
complex, , behaviors in presentation.
, we'd got a lot of supporting, , for overnight respite.
And, , but sadly, his, his mom was also family ill,
which added, , additional pressure.
And the family were wanting time together as a family.
, sadly his behavior came to such a point that we, ,
we needed to find residential and, ,
because Devin didn't have residential placements for,
, young people under the age of 18, ,
with a learning disability, he was placed in Kent.
And, , it was a really, really hard evening.
I had to wait with him in a respite at home.
And people came up from country we'd never met before,
and he got in with these people
and was taken off to get '.
He didn't know anybody.
And, , it was distressing and, and horrible.
, and I think for me then it was trying to, then
it's constantly saving my mind in, in to say,
we, we can't have this.
We can't have, yeah. People being
shipped off in the middle of the night.
We have a placement out of county that's not .
, and constantly advocating for those needs for families
because it's not, we don't support the child.
We support the families and try and hold them together.
Mm-hmm. , and for that family, when they're already going
through such a distressing time, they also had
this additional pressure
and this additional knowledge that, that their son was,
was going somewhere that he didn't know.
And, , I was going up
and down to Kent probably,
I think it was once every two weeks to go
and see him, which was part of the role we had to do then.
And we eventually did get him back to Devin. Really?
, but it was, it was not .
And, and I think that's what holds me
and drives me with this service is
whenever possible, if we can keep on this together.
, and sometimes you can't.
And that's, , that's a really tough decision
that parents sometimes make.
Yeah. But if we can't, then can we have them endeavor
that Absolutely.
that families can still maintain contact
and for that young person and that,
and that we have that planned, planned transition for
that young person that it's not in the middle
of the night in the line with two guys that they don't know.
That's absolutely was awful.
, yeah, that's the, that's the one experience
that stays with me
and drives me with, with things when they're getting tough
and, and keeping families
and, , young people in mind.
And I think that young person's story still very much
alive and still being told, isn't it?
why yourself And that difference that drives
through is , you will never be forgotten and
nor will his mom, it still there
and , you said, changed your experience
and shaped, you said, everything
that you stand for going forward.
Absolutely. Yeah. Thinking
In the service, how do you, I'd , I appreciate
that you will have the, , service achievements
and where we have achieved,
but for yourself, what do you see when the service achieves
and you've gone, we've reached good outcomes, would you say?
I think, I think it, it's when we know we've got it .
And that can be a whole load of different presentations.
, we, as you said, we've got various outcomes
that we have to achieve for, for various national drivers.
And that's, that's great. That's numbers usually.
And that's that works.
And I, I nobody likes people waiting. Yes.
, but for me it's when we know we've got it
for young people and their families,
and that can be a whole variety of things.
It can be as small as, as, , , a young person
wanting to do something independently
and they manage to do that.
It can be that a parent gets a whole night's sleep
and they feel refreshed and
therefore can enjoy their experience
with their child the next day.
Mm-hmm. , and it can be, it can be bigger things,
but it's, it's, it's often the small things
that make the difference and the small things
that we celebrate in the service are usually those tiny
moments, but make up the difference for the quality of life
for the family and the young person.
, it is hard to quantify with one Yeah.
Example that I think there's lots
of examples that we could say.
Yeah, I've got it there.
Absolutely. I think even , I remember
with one family working with, and the child was 11
and it's the first time they said, mama, and they called
and we cried together.
It's you said it, what can feel maybe
smaller to other people.
It's huge. And when you've been part of that journey
with a family and young person, it is small milestones,
you said, being able to have that extra hour
of sleep or Yeah.
, the things that are really important
that could be easily overlooked is we bring it back
and go, let's ,
let's celebrate The sisters made a real difference.
It's huge. I can, I can remember having phone calls
or coming to in the days of answering machines, coming back
to lunch, seeing messages
and for the parents saying he's paid the food on the water.
Yeah. He's done it.
And, and then the whole office absolutely celebration
because there's something that's done,
been done independently.
And, , it's massive. It is huge.
And it, and it brings much joy and, and, and it, yeah.
It's that it's the small things,
but it's the small things that make a huge difference.
Definitely. I was thinking about when you were talking
about children, young people
and families, voice, hearing them.
How do you see as our service that we bring the families
and carers voice in and the young person,
and why is it important
that when we're completing our assessments
and we're doing our interventions that we have,
you said, the family
and the young person involved with it?
I think if we, if we don't have that we're in danger
of whacking labels or doing an assessment
and making an assumption
what we think the young person Yeah.
Needs or the family needs.
, I think days gone by, we will often
do the assessment with parents.
Yeah. And, ,
their needs might be slightly
different to the young persons.
And I think that's why it's important
that we get young people's voices in
There. Yeah. ,
Because there's, there's examples of young people
with, with certain behaviors that may not be distressing,
but for the parent, they're, they're not seen
as the norm and they wanna change it.
But for that young person, it's great.
They doing it not hurting anybody. Yeah.
Grackle very, very true.
And I think that's, that's why it's important we get
those, those children's voices.
Sometimes it's time consuming
and I think that's what's often lost in, , when,
when you look at data and statistics
and all the, all the, the number crunching that happens
that we have to deliver to, ,
the national drivers is the time it can
take to get the child's voice.
Absolutely. Especially young people. Exactly.
You can, you have, you might have to go through time.
Absolutely. Go through the door. Absolutely. Yeah.
Yeah. You're quite, I
Think, I think that's, , important and,
and things observation.
, you can, you can get a lot
from observing a young person.
even if the communication isn't verbal
or they don't have a communication aid that is,
is they're able to use at that time.
observing, seeing
what's their response to this.
It, you get that voice, it's taking their time
and that recognition and looking and, and feeling.
, , it, it is, it's the assessment
and it's being part of that family, which is why
the things COVID, it was difficult for us
because everything went on to teams
and one check in with parents.
You can't do it in the same way with our young people.
, they, they really on the whole
some were fine with it.
Absolutely. But on the whole, it was really difficult to,
, get that child's voice in a meaningful way.
Absolutely. It's that relationship building
with the young person that's a screen doesn't,
in my opinion, provide in the same way, you said,
for our young people, there's
many different ways in which they allow you to have
that connection with them,
but through a screen sometimes can feel a barrier with it.
And also considering our families
and carers that we work with too, that suddenly Yeah.
Shifted from the human connection
that I think is still really important.
Yeah, absolutely.
I was thinking when you mentioned COVID,
thinking about, do you have thoughts about what some
of the challenges children
and young people with a learning disability you in your
opinion and experience face and for families
and carers, what you think some
of the challenges you feel that they face today,
But not in COVID now. Yeah, yeah.
Or from the impact from COVID too.
We know that mental health has really seen an increase from
COVID or some, you said,
some people found the actual connection or using teams
and things has helped, but we've seen other people,
their mental health has struggled and resources
and things have changed too. other
Thoughts. I think
it's a mixture of those things.
I think the, the impact
of COVID you talked about, I think and,
and the fact that young people couldn't access
education in the same way.
that had a huge impact on, on children
and young people that were reliant on routines, for example.
Very. That had an impact in families.
, I think the struggles that families
and young people are facing are much the same
as, as every other young person
and family in this current climate with, , NHS,
, cost of living courses, all of those, all
of those things that are out there.
But in addition, they also have a young person
with these additional needs that,
that may need more support.
And sadly that supports in the way that it used to be.
Is that them in the same way.
, things short breaks are not there
to support a family that may need
what we've talked about sleep, for example, those night,
that sadly has declined the availability of that
with pressure on, on services and resources.
Yeah. I think those are the, the pressures they face.
I think there's a higher demand for specialist education
that's increased considerably.
, recruitment is always difficult into those environments.
then that has a knock effect on effect of,
of what's done for those families.
, and I think , society in a whole is,
is tough at the moment.
I think everyone's struggling in their own way and,
and that's enhanced in some ways
for our families and young people.
it's about being there and,
and supporting if whenever we can.
And I, and I think listening,
I think we underestimate the way listening sometimes the
hearing, , we wanna solve
and we want to, , make it all .
But sometimes a parent
or the other person wants
To talk. Absolutely. And that's,
That's really, really important.
But, , you could,
you can't on to find that and measurement. No,
I do remember a parent recently saying to me,
there's a difference between a professional who listens
and a professional who really listens.
you said, there is something about,
and our world can feel quite busy
and demanding, be our watches
that let us know someone's message to our teams going off.
And , you said, being present
and hearing someone's story.
And that's important in my experience, I think
for the children, families, and the young people.
It's you said, a space.
If you want to share, then we are here to hear, to hear
what you have to say and it's important
and valid what you say.
And I think that is a, yeah.
you said, we can't change everything.
We haven't got a magic wand, but we can, we can hear
and we can think about what we have got within our skills
and what's available to use to our best.
Absolutely. Yeah. What's your hopes,
aspirations, thinking
of the specialist learning disability service going forward?
What would you to see?
I think more the same.
I think, I think we never stopped developing and I,
and I'm super proud of that as a service,
that we are constant, constantly changing our, ,
delivery even by tweets, by what the feedback
that we getting from families and young people
and other professionals.
I think it would be for us to continue
as we are, But better.
I don't think we're ever in a place
where we say this is us and we're amazing
because there's
many other things that we can do.
There's many other things we can change. Yeah.
, and, and,
and more evidence can down more research coming.
Yeah. And we have to keep evolving and, and moving with that
and, and the pressures of,
of families and young people change.
Yes. And I think we're very much influenced by that
and what we can deliver to support that.
I, I think more of the same, but let's keep going
and let's keep improving and let's keep changing, ,
and adapting to those needs. And which
Is what you said at the heart
of learning disability nursing from the beginning when
we first started talking was you said the ability to adapt.
Yeah. And that's something you said, we need
to keep hearing, keep seeing, keep adapting.
Yeah. Keep changing, keep learning.
Yeah, absolutely.
got a few questions before we finish First step.
, I wondered, Beth, what would you carers
and parents to hear from you today who'll be accessing our
service in the future?
What would your words be to them?
And also if I could ask those
who have accessed our service, those two parts
for our future and those who've accessed
before, what would your message for you to them?
I think for the parents that haven't accessed us or
or professionals to, to, to reach out to talk to us,
, we may not be the service support,
but if we're not, we will support you to find a service
that may.
, and,
and if there are gaps, if there are things
that are not being
provided that you think would be
helpful, again, let us know.
We're always developing, we're always looking at ways
of, of how we work.
, and
that's very much influenced by the people we support.
We can only deliver to that standard if, if,
if we're aware of what's needed.
, I would say be open with us and, and talk to us and,
and they're, , super friendly bunch that,
that's the one thing I would put out there is the team
are as well as being passionate
and, , determined,
, in their personalities.
They're also super supportive and friendly
and, , that, that's always worth a, a conversation.
And, and, and to reach out to you that
You said when we did we, this obviously is a
absolutely final polished version of this podcast
where we met before doing our premo.
You mentioned about wellbeing for parents and carers
and you were thoughtful of that and the term wellbeing.
But I was thinking when you said about children
and young people, and , you said,
their behaviors can be difficult for parents and carers.
And you, when we first ran through,
you also talked about parents
and carers thinking of themself,
which can be really difficult.
, when you are looking
after a child with a learning disability,
it can be present some challenges.
And I wondered not,
we don't wanna put wellbeing onto anyone with a pressure,
but I suppose I was thinking when you talked
about the importance of ourselves too, where you can
thinking of yourself too.
Yeah, it is. It is though.
It is looking after yourself and,
and I think parents, parents generally
don't put themselves first.
, and I think parents
who are also advocating for children Yes.
Definitely don't Yeah. Put themselves first.
, my plea would be to,
to wherever you can to look after yourselves.
And that might be you talked about the extra hours
sleep or a walk
or any of those things that, that might give you
that space and time to, to , , be you.
Yeah. energy, there's much you, you said,
when you are advocating and having, and some of our parents
and carers families work with me, have their own needs too.
they're already having their challenges, you said,
it's trying to find, to know you are important too.
Yeah. , in This journey, what about for children
and young people who've accessed the service they've passed
them to are coming forward?
What would you your message to be to them?
, I, I want to say the words that, ,
my granddaughter said to me last week, which was,
, you do you
That's awesome. Which
was, which was incredible.
And I think, and I think that's it.
It's, it's be you
and we'll, we'll help you, we'll support you.
, and if there's things that, that you wanna work on,
we'll we'll help in any way we can.
But yeah, , be you.
I think when, again, when we did our pre-run,
you said don't change.
That was a big message for yourself was
, you don't need to.
Yeah. That don't
Need to change. You don't need to plead
with anybody else as well. Yeah.
Do you need to make the world work for you? Do you? Yeah,
Absolutely. ,
and you said,
closing thinking about
professionals 'cause you are .
We can, I feel sometimes guilty.
I can assume that as professionals will have
that experience knowledge working with people
with learning disability
and you are , not everyone does.
think of any of our professionals, colleagues
who are out there who may be listening to our podcast.
What advice would you give to them if they
get the privilege in my mind of working with someone
with a learning disability
or someone who's accessing our service?
How would you say your advice would be
for them in that first meeting?
I would say work alongside us
and don't, we don't expect everyone to know everything.
And I think that's some of the barriers
that we may come across is that, ,
professionals are slightly, ,
hesitant about the work because they may not feel confident.
Yeah. And if they come alongside us
and work with us, we'll always support that.
Yeah. , I want say join again
because that's as many times as you wanted.
This is your journey.
, we will, we will support.
We don't, if you came to us
and said, , I don't understand this presentation.
I'm not sure how to, how to work.
That's, that's what we're there for. We'll enhance that.
We'll support that, but tell
us and we can work with you.
You think that's something if a, it's being able
to say, you said, without judgment.
I'm not sure how to, if we start raising it
and go, I may not feel confident, but I want to learn.
Yeah. And I want to be able
to know more about this young person who's come through
and asking the family and care
and asking the young person to, you said,
how do they communicate?
What do you need from me? Yeah.
, it starts to break it down
and then maybe we start reducing those
health inequalities again.
Completely. And I think also the,
quite often when professionals come together, it's usually
because there's a time in that person's, young person's life
that is really challenging or they're in crisis.
everybody then is a little bit panicky
and a little bit , oh my goodness,
what do we need to do to support?
But if we could all take a step back
and say, , you are gonna do this, we'll do this.
And it's all quite measured and planned.
It can have better outcomes for young people.
And that's what we want and that's what we want.
But it's when we're all spiraling,
trying desperately to get it .
And that's the moment when we should say,
I'm not really sure of this bit,
but if you can do this bit, we'll get there.
Thank you, Bev. Is there anything else you'd to say
or do you feel you have said much?
I think I've said much, much.
Bert, thank you much for coming on.
This is your journey. We thoroughly enjoyed having you.
Thank you much.
You're very welcome.