where r tell people what I do for a living I can almost guarantee the
living I can almost guarantee the
living I can almost guarantee the response how sad that must be really
response how sad that must be really
response how sad that must be really difficult I don’t know how you do that
difficult I don’t know how you do that
difficult I don’t know how you do that now people say this because they think
now people say this because they think
now people say this because they think that children’s hospices a place is full
that children’s hospices a place is full
that children’s hospices a place is full of sadness and loss and death and grief
of sadness and loss and death and grief
of sadness and loss and death and grief they’re wrong a children’s hospice can
they’re wrong a children’s hospice can
they’re wrong a children’s hospice can be one of the most uplifting places you
be one of the most uplifting places you
be one of the most uplifting places you will ever have the pleasure of working I
will ever have the pleasure of working I
will ever have the pleasure of working I deal with life every day but we must
deal with life every day but we must
deal with life every day but we must remember that death is sadly part of
remember that death is sadly part of
remember that death is sadly part of life and sadly children and young people
life and sadly children and young people
life and sadly children and young people aren’t exempt from that and yes I want a
aren’t exempt from that and yes I want a
aren’t exempt from that and yes I want a children’s hospice so some days we care
children’s hospice so some days we care
children’s hospice so some days we care for her support children and young
for her support children and young
for her support children and young people at the end of their lives and we
people at the end of their lives and we
people at the end of their lives and we care for and support their parents and
care for and support their parents and
care for and support their parents and Families the pain of loss and grief
Families the pain of loss and grief
Families the pain of loss and grief however what we do most of the time is
however what we do most of the time is
however what we do most of the time is to work with children young people and
to work with children young people and
to work with children young people and their families to help them live the
their families to help them live the
their families to help them live the lives they want to lead making sure they
lives they want to lead making sure they
lives they want to lead making sure they have all the care and support they need
have all the care and support they need
have all the care and support they need to achieve that making every moment
to achieve that making every moment
to achieve that making every moment count for every child own personal
count for every child own personal
count for every child own personal family is what we aspire to achieve
family is what we aspire to achieve
family is what we aspire to achieve every single day at the hospice so today
every single day at the hospice so today
every single day at the hospice so today what I like to talk to you about is what
what I like to talk to you about is what
what I like to talk to you about is what does face in the future mean when you’re
does face in the future mean when you’re
does face in the future mean when you’re a young person living with a
a young person living with a
a young person living with a life-limiting a life-threatening
life-limiting a life-threatening
life-limiting a life-threatening condition a condition that will
condition a condition that will
condition a condition that will significantly shorten your life to help
significantly shorten your life to help
significantly shorten your life to help do this I’ve own list the help of some
do this I’ve own list the help of some
do this I’ve own list the help of some very brave special young people that we
very brave special young people that we
very brave special young people that we support at the Don Luiz Children’s
support at the Don Luiz Children’s
support at the Don Luiz Children’s Hospice here in stoke-on-trent I’m going
Hospice here in stoke-on-trent I’m going
Hospice here in stoke-on-trent I’m going to let them introduce themselves
thank you I’m doing so these young
thank you I’m doing so these young people have one major thing in common
people have one major thing in common
people have one major thing in common they are all living with a life emitting
they are all living with a life emitting
they are all living with a life emitting or life-threatening condition so at this
or life-threatening condition so at this
or life-threatening condition so at this point you may have noticed two things I
point you may have noticed two things I
point you may have noticed two things I talk about living with a life emitting a
talk about living with a life emitting a
talk about living with a life emitting a life-threatening condition not dying of
life-threatening condition not dying of
life-threatening condition not dying of an illness or condition now this is
an illness or condition now this is
an illness or condition now this is really important as a children’s
really important as a children’s
really important as a children’s palliative care specialist we focus on a
palliative care specialist we focus on a
palliative care specialist we focus on a navy and supporting all to Leon people
navy and supporting all to Leon people
navy and supporting all to Leon people to live the life they aspire to to
to live the life they aspire to to
to live the life they aspire to to achieve their hopes dreams and business
achieve their hopes dreams and business
achieve their hopes dreams and business aspirations despite their condition and
aspirations despite their condition and
aspirations despite their condition and illness the second thing you might be
illness the second thing you might be
illness the second thing you might be wondering is what are these conditions
wondering is what are these conditions
wondering is what are these conditions i’m talking about what our life emitting
i’m talking about what our life emitting
i’m talking about what our life emitting conditions what our life threatening
conditions what our life threatening
conditions what our life threatening conditions were life-limiting conditions
conditions were life-limiting conditions
conditions were life-limiting conditions are those conditions often progressive
are those conditions often progressive
are those conditions often progressive for which there is no hope of cure and
for which there is no hope of cure and
for which there is no hope of cure and which will ultimately be fatal
which will ultimately be fatal
which will ultimately be fatal shortening your life significantly often
shortening your life significantly often
shortening your life significantly often in childhood or early adulthood these
in childhood or early adulthood these
in childhood or early adulthood these lots of conditions that follows this
lots of conditions that follows this
lots of conditions that follows this category the one our suspect you’re most
category the one our suspect you’re most
category the one our suspect you’re most familiar with will reduce schönes
familiar with will reduce schönes
familiar with will reduce schönes muscular dystrophy life-threatening
muscular dystrophy life-threatening
muscular dystrophy life-threatening conditions on the other hand are those
conditions on the other hand are those
conditions on the other hand are those conditions for which treatment is
conditions for which treatment is
conditions for which treatment is available but treatment could fail and
available but treatment could fail and
available but treatment could fail and again the one I suspect you’re most
again the one I suspect you’re most
again the one I suspect you’re most familiar with would be cancer so facing
familiar with would be cancer so facing
familiar with would be cancer so facing the future three little words that can
the future three little words that can
the future three little words that can be interpreted in so many diverse and
be interpreted in so many diverse and
be interpreted in so many diverse and unique ways so before I go on any longer
unique ways so before I go on any longer
unique ways so before I go on any longer I’d like you to all please just to think
I’d like you to all please just to think
I’d like you to all please just to think about for just a few moments the words
about for just a few moments the words
about for just a few moments the words you would use to describe how you felt
you would use to describe how you felt
you would use to describe how you felt about facing your future when you were
about facing your future when you were
about facing your future when you were 16 17 or 18
I suspect for some of you there may have
I suspect for some of you there may have been words like excited full of hope and
been words like excited full of hope and
been words like excited full of hope and anticipation looking forward to new
anticipation looking forward to new
anticipation looking forward to new discoveries new experiences carefree for
discoveries new experiences carefree for
discoveries new experiences carefree for the phone laughter sadly for some of the
the phone laughter sadly for some of the
the phone laughter sadly for some of the young people that we supported the Don
young people that we supported the Don
young people that we supported the Don Luiz this isn’t the case Facing the
Luiz this isn’t the case Facing the
Luiz this isn’t the case Facing the Future for them can actually quite the
Future for them can actually quite the
Future for them can actually quite the opposite it can be scary very scary it
opposite it can be scary very scary it
opposite it can be scary very scary it can be a battle as you move from
can be a battle as you move from
can be a battle as you move from children’s to adult services you often
children’s to adult services you often
children’s to adult services you often have to fight for everything you have to
have to fight for everything you have to
have to fight for everything you have to fight for access to appropriate
fight for access to appropriate
fight for access to appropriate healthcare you have to fight for the
healthcare you have to fight for the
healthcare you have to fight for the right Social Care Support Package fight
right Social Care Support Package fight
right Social Care Support Package fight for equipment fight for transport it’s a
for equipment fight for transport it’s a
for equipment fight for transport it’s a social life that’s a luxury are not a
social life that’s a luxury are not a
social life that’s a luxury are not a given and it can be alive fraught with
given and it can be alive fraught with
given and it can be alive fraught with all kinds of challengers issues and
all kinds of challengers issues and
all kinds of challengers issues and barriers but at this point I’m going to
barriers but at this point I’m going to
barriers but at this point I’m going to let some the old people talk about their
let some the old people talk about their
let some the old people talk about their experience a face in their future yeah I
experience a face in their future yeah I
experience a face in their future yeah I liked it is I’m doing fine same day as
liked it is I’m doing fine same day as
liked it is I’m doing fine same day as eyebrows my edges are going to this see
eyebrows my edges are going to this see
eyebrows my edges are going to this see all right but I’m i select on you a
all right but I’m i select on you a
all right but I’m i select on you a little bit earlier I am is there just
little bit earlier I am is there just
little bit earlier I am is there just talking about mathematician watch them
talking about mathematician watch them
talking about mathematician watch them apart made across this accommodation
apart made across this accommodation
apart made across this accommodation suppose it is for me now purchases
suppose it is for me now purchases
suppose it is for me now purchases flight treasure it’s like to be
flight treasure it’s like to be
flight treasure it’s like to be different in half my feet ship and now
different in half my feet ship and now
different in half my feet ship and now nearly remember engage as you want to do
nearly remember engage as you want to do
nearly remember engage as you want to do or that I feel it and have a patient I’m
or that I feel it and have a patient I’m
or that I feel it and have a patient I’m anyone little dent updated an hour and
anyone little dent updated an hour and
anyone little dent updated an hour and that will you risk injury so I know I
that will you risk injury so I know I
that will you risk injury so I know I know I box change
know I box change
know I box change before my versions of secular their
before my versions of secular their
before my versions of secular their school and then did college legatee
school and then did college legatee
school and then did college legatee investing what that will change when I
investing what that will change when I
investing what that will change when I love sign all this stuff and blemish
love sign all this stuff and blemish
love sign all this stuff and blemish balm okay I’ll take in what I was a bit
balm okay I’ll take in what I was a bit
balm okay I’ll take in what I was a bit of a college or to do my colleges and
of a college or to do my colleges and
of a college or to do my colleges and then 50 this 10 hey crashing down like
then 50 this 10 hey crashing down like
then 50 this 10 hey crashing down like stop by potential for future kings
stop by potential for future kings
stop by potential for future kings island there were I want to do I don’t
island there were I want to do I don’t
island there were I want to do I don’t think about futures just I’m concerned
think about futures just I’m concerned
think about futures just I’m concerned when I get there how I actually do it so
when I get there how I actually do it so
when I get there how I actually do it so I in my mind of God set that little one
I in my mind of God set that little one
I in my mind of God set that little one to do but and it’s not like something
to do but and it’s not like something
to do but and it’s not like something that’s like Alice well groomed
that’s like Alice well groomed
that’s like Alice well groomed impossible of what in your mind you know
impossible of what in your mind you know
impossible of what in your mind you know sensible things that I want to do with
sensible things that I want to do with
sensible things that I want to do with my life and older it’s just when we get
my life and older it’s just when we get
my life and older it’s just when we get to the point of doing it well you know
to the point of doing it well you know
to the point of doing it well you know how to accomplish it I just take a long
how to accomplish it I just take a long
how to accomplish it I just take a long time I don’t know ignore the future you
time I don’t know ignore the future you
time I don’t know ignore the future you see if he comes cuz I don’t really know
see if he comes cuz I don’t really know
see if he comes cuz I don’t really know where let him know what how never do I
where let him know what how never do I
where let him know what how never do I just like trying to be as much so huh
just like trying to be as much so huh
just like trying to be as much so huh you heard different tech spirits is
you heard different tech spirits is
you heard different tech spirits is there you heard Tilly talk up being
there you heard Tilly talk up being
there you heard Tilly talk up being excited to want to do all the things
excited to want to do all the things
excited to want to do all the things that all young people want to do it just
that all young people want to do it just
that all young people want to do it just takes a little bit more time and
takes a little bit more time and
takes a little bit more time and planning we also heard Khloe talking
planning we also heard Khloe talking
planning we also heard Khloe talking about having her future all planned out
about having her future all planned out
about having her future all planned out and that future sadly coming crashing
and that future sadly coming crashing
and that future sadly coming crashing down around her as a health needs
down around her as a health needs
down around her as a health needs changed deteriorated as a young person
changed deteriorated as a young person
changed deteriorated as a young person living with a life of it in our life
living with a life of it in our life
living with a life of it in our life threatening condition you could and
threatening condition you could and
threatening condition you could and should be planning for your future
should be planning for your future
should be planning for your future planning for your future studies your
planning for your future studies your
planning for your future studies your careers your independence like all other
careers your independence like all other
careers your independence like all other young people however but some of the
young people however but some of the
young people however but some of the young people that we care for also have
young people that we care for also have
young people that we care for also have to think about is what time they’re
to think about is what time they’re
to think about is what time they’re going to have left to achieve although
going to have left to achieve although
going to have left to achieve although things and ultimately when their lives
things and ultimately when their lives
things and ultimately when their lives may come to an end imagine if you can
may come to an end imagine if you can
may come to an end imagine if you can and it’s very difficult to be 16 17 or
and it’s very difficult to be 16 17 or
and it’s very difficult to be 16 17 or 18 and trying to plan for your future
18 and trying to plan for your future
18 and trying to plan for your future hopes dreams ambitions but also planning
hopes dreams ambitions but also planning
hopes dreams ambitions but also planning things like where you’d like to be the
things like where you’d like to be the
things like where you’d like to be the end of your life who would like to have
end of your life who would like to have
end of your life who would like to have around you what kind of funeral you’d
around you what kind of funeral you’d
around you what kind of funeral you’d like to have you would like to leave
like to have you would like to leave
like to have you would like to leave your special belongings to I’m sure
your special belongings to I’m sure
your special belongings to I’m sure you’ll agree that’s a huge psychological
you’ll agree that’s a huge psychological
you’ll agree that’s a huge psychological dilemma for any young person to have to
dilemma for any young person to have to
dilemma for any young person to have to face in the palliative care world we
face in the palliative care world we
face in the palliative care world we call this parallel planning now parallel
call this parallel planning now parallel
call this parallel planning now parallel planning is health professional support
planning is health professional support
planning is health professional support children young people and adults to
children young people and adults to
children young people and adults to simultaneously plan the life they would
simultaneously plan the life they would
simultaneously plan the life they would like to lead and the death they would
like to lead and the death they would
like to lead and the death they would like to have again a really difficult
like to have again a really difficult
like to have again a really difficult concept to get your head around at any
concept to get your head around at any
concept to get your head around at any age never mind as young person so how do
age never mind as young person so how do
age never mind as young person so how do they do it how do these very brave young
they do it how do these very brave young
they do it how do these very brave young people face dealing with knowing they’re
people face dealing with knowing they’re
people face dealing with knowing they’re not going to have the time or the
not going to have the time or the
not going to have the time or the opportunities that we all take for
opportunities that we all take for
opportunities that we all take for granted to achieve the things you want
granted to achieve the things you want
granted to achieve the things you want to achieve relationships possibly
to achieve relationships possibly
to achieve relationships possibly marriage possibly children they’re all
marriage possibly children they’re all
marriage possibly children they’re all mortality how do young people face their
mortality how do young people face their
mortality how do young people face their own mortality well here single people
own mortality well here single people
own mortality well here single people talk about how they’ve dealt with it
talk about how they’ve dealt with it
talk about how they’ve dealt with it yeah worry about like my life like I
yeah worry about like my life like I
yeah worry about like my life like I will anyway not always in the end and I
will anyway not always in the end and I
will anyway not always in the end and I want to try and do do as much as I can
want to try and do do as much as I can
want to try and do do as much as I can before then
and I think it as we’ve got all dates
and I think it as we’ve got all dates because i have seen my conditions like
because i have seen my conditions like
because i have seen my conditions like limiting get to spend a lot of people
limiting get to spend a lot of people
limiting get to spend a lot of people that have passed away unfortunately so
that have passed away unfortunately so
that have passed away unfortunately so it’s always very much in the forefront
it’s always very much in the forefront
it’s always very much in the forefront of my mind about the condition and the
of my mind about the condition and the
of my mind about the condition and the time I’ve got really that that does
time I’ve got really that that does
time I’ve got really that that does affect you that even I know that we can
affect you that even I know that we can
affect you that even I know that we can all go anytime but obviously when you
all go anytime but obviously when you
all go anytime but obviously when you got lively with condition it’s obviously
got lively with condition it’s obviously
got lively with condition it’s obviously more more real in your mind then it will
more more real in your mind then it will
more more real in your mind then it will be in say someone else do it was my age
be in say someone else do it was my age
be in say someone else do it was my age 28 they wouldn’t think about their own
28 they wouldn’t think about their own
28 they wouldn’t think about their own mortality really a lot a lot of friends
mortality really a lot a lot of friends
mortality really a lot a lot of friends with Ike initiative passed away and it
with Ike initiative passed away and it
with Ike initiative passed away and it feels like there’s not many of us left
feels like there’s not many of us left
feels like there’s not many of us left from my age group there so it’s a bit
from my age group there so it’s a bit
from my age group there so it’s a bit scary really to think wait because
scary really to think wait because
scary really to think wait because you’re not sure who it could be next see
you’re not sure who it could be next see
you’re not sure who it could be next see it’s pretty much guaranteed that it
it’s pretty much guaranteed that it
it’s pretty much guaranteed that it could happen at some point also as it
could happen at some point also as it
could happen at some point also as it feels like you need to hurry up and do
feels like you need to hurry up and do
feels like you need to hurry up and do things because you might not have time
things because you might not have time
things because you might not have time to get things done a lot of things like
to get things done a lot of things like
to get things done a lot of things like I like find a partner or something
I think about it I’m not sure Oh the
I think about it I’m not sure Oh the only thing sounds like someone else into
only thing sounds like someone else into
only thing sounds like someone else into what music and I hear a song and I think
what music and I hear a song and I think
what music and I hear a song and I think happened I don’t know why I think this
happened I don’t know why I think this
happened I don’t know why I think this one but I like that kind of a few as you
one but I like that kind of a few as you
one but I like that kind of a few as you can see there’s no one way that young
can see there’s no one way that young
can see there’s no one way that young people deal with him or 30 they deal
people deal with him or 30 they deal
people deal with him or 30 they deal with it in their own unique and
with it in their own unique and
with it in their own unique and individual ways I should expect when I
individual ways I should expect when I
individual ways I should expect when I was preparing and planning for this talk
was preparing and planning for this talk
was preparing and planning for this talk I was prepared to hear them really sad
I was prepared to hear them really sad
I was prepared to hear them really sad difficult and challenging things we were
difficult and challenging things we were
difficult and challenging things we were after all discussing some very sensitive
after all discussing some very sensitive
after all discussing some very sensitive subject matter however what I got
subject matter however what I got
subject matter however what I got instead was a huge dose of hope and
instead was a huge dose of hope and
instead was a huge dose of hope and inspiration for many of the old people I
inspiration for many of the old people I
inspiration for many of the old people I got a real live demonstration of courage
got a real live demonstration of courage
got a real live demonstration of courage in the face of adversity of bravery
in the face of adversity of bravery
in the face of adversity of bravery immaturity that was way beyond their
immaturity that was way beyond their
immaturity that was way beyond their years and just to give you an example of
years and just to give you an example of
years and just to give you an example of that I’d like to read to you some words
that I’d like to read to you some words
that I’d like to read to you some words from two of young people that you saw in
from two of young people that you saw in
from two of young people that you saw in that film clip the first one is from
that film clip the first one is from
that film clip the first one is from Tilly and this demonstrates beautifully
Tilly and this demonstrates beautifully
Tilly and this demonstrates beautifully that hope and inspiration sorry I put my
that hope and inspiration sorry I put my
that hope and inspiration sorry I put my glasses on as a young person with a
glasses on as a young person with a
glasses on as a young person with a potentially life-threatening condition I
potentially life-threatening condition I
potentially life-threatening condition I feel only all the more inspired to live
feel only all the more inspired to live
feel only all the more inspired to live each day to the full I personally do not
each day to the full I personally do not
each day to the full I personally do not dwell on the more sinister aspects of my
dwell on the more sinister aspects of my
dwell on the more sinister aspects of my condition but instead invest my full
condition but instead invest my full
condition but instead invest my full attention into how I can make my life a
attention into how I can make my life a
attention into how I can make my life a fantastic one however long it may be if
fantastic one however long it may be if
fantastic one however long it may be if you aren’t able to live a hundred
you aren’t able to live a hundred
you aren’t able to live a hundred percent at the time one will call a
percent at the time one will call a
percent at the time one will call a normal life time you must only ensure
normal life time you must only ensure
normal life time you must only ensure that you get a hundred percent out of
that you get a hundred percent out of
that you get a hundred percent out of each and every second to me Facing the
each and every second to me Facing the
each and every second to me Facing the Future means ambition preparation
Future means ambition preparation
Future means ambition preparation flexibility and courage ambition is
flexibility and courage ambition is
flexibility and courage ambition is inside every teenager and I as a
inside every teenager and I as a
inside every teenager and I as a sixteen-year-old girl with spinal
sixteen-year-old girl with spinal
sixteen-year-old girl with spinal muscular atrophy am no different and
muscular atrophy am no different and
muscular atrophy am no different and lastly I Levon Levon Charlotte’s were
lastly I Levon Levon Charlotte’s were
lastly I Levon Levon Charlotte’s were starts a very down-to-earth your lady
starts a very down-to-earth your lady
starts a very down-to-earth your lady and keeps it quiet Barry
and keeps it quiet Barry
and keeps it quiet Barry she quite simply said you can’t live
she quite simply said you can’t live
she quite simply said you can’t live your whole life thinking you might die
your whole life thinking you might die
your whole life thinking you might die you’ve just got to make the most of what
you’ve just got to make the most of what
you’ve just got to make the most of what you’ve got and carry on with life do the
you’ve got and carry on with life do the
you’ve got and carry on with life do the things you want to do and make the most
things you want to do and make the most
things you want to do and make the most of what you’ve got the hope that leaves
of what you’ve got the hope that leaves
of what you’ve got the hope that leaves you two with a smaller dose perhaps of
you two with a smaller dose perhaps of
you two with a smaller dose perhaps of hope and inspiration thank you for
hope and inspiration thank you for
hope and inspiration thank you for listening
listening
listening [Applause]
”
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