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