thank you rachel i now start my speech
for my tap
that's fantastic um i'm going to change
the mood slightly i'm sorry about that
in some ways so
um i'd like to introduce you to a friend
of mine and i would really like you to
close your eyes
don't fall asleep after all that
exercise but if you could close your
eyes and concentrate
on the gentleman i'm just about to
introduce you to
trust me please close your eyes
i'd like to introduce you to robert he's
early 40.
he was diagnosed with primary
progressive ms in his early 30s
he's now trapped in a body that doesn't
work for him
he's in a wheelchair from the moment he
gets up to the moment he's put to bed
the caters come in four times a day he
gets up
at about nine o'clock and he goes to bed
at six o'clock in the evening
in that time he's in east wheelchair
aldi
this is july and it's very very hot
outside
he's sitting in his wheelchair waiting
for his social worker to arrive
and he is perspiring down back and his
head
is very itchy because he's not had a
shower for about three weeks
the caters come in because of time
restraints they're only in for
10 or 15 minutes sometimes quick bed
bath
wash and up microwave is pinged
and some pore i just put in front of
them sometimes it's too
hot and the carriers don't have time to
actually
meal assist to miss breakfast so it
stays there until 12 o'clock until the
next carriers come in
he lives by himself he was married with
two children
and when he was diagnosed they were the
archetypal
lovely family he had a wonderful job
beautiful wife two lovely children and
their life was mapped out
unfortunately ms arrived to join the
party
and um his family disintegrated
his wife didn't sign up for this he had
three years of rapid degeneration high
dependency happened very quickly
and she struggled to cope she had to go
back to work full-time because he was
working they had two children and
unfortunately the stress of caring
caused depression for her
and the stress of living was too much
for her
she fell into the trap of a lot of
carers in the fact that she
either um also cares for abusive drugs
alcohol
or food and she fell into the trap of
once
robert was in bed and children in bed
opening a bottle or two of wine
and became morbidly obese
they realized that this couldn't carry
on because if anything happened to her
there was nobody there to look after the
children so they decided to separate
and so much so that he doesn't really
see her or the children
for the children it's not cool to bring
anybody home
from school if your dad's in a
wheelchair you can't understand what
he's saying
he's dribbling and he smells of pee
and that's not really very cool for the
kids and robert
quite philosophically understood that
he um he spent his day
by himself most of the time the friends
that they did have he used to come in a
regular basis
one by one dropped off and now he's only
got one or two people that come and see
him
apart from his carers and sometimes the
carers don't turn up because there's
issues
within the care agency and it makes a
very socially isolated situation
and actually quality of life isn't there
however
there's one thing three years ago his
social worker who has been very
proactive
managed to acquire funding for him
to visit lucky house over christmas in a
year christmas and year is very
difficult time for people with high
dependency because a
they don't want to intrude in other
people's family but also
their own carers need time off as well
and it's very haphazard whether
the care will arrive or not especially
with the festive season
so the social worker said i think it'd
be really good if we could get you to
looking because at least
you will get back here so he came to
looking for the first time that
christmas
that was three years ago and immediately
he met like-minded people same level of
dependency
they could interact they had a lot of
fun together
the activities and entertainments were
planned he could decide if he wanted to
go to the pantomime
if he could go to the cinema or he could
go up to christmas market or if you just
wanted to stay
at lucky house and just listen to the
children that came in from local schools
to sing carols
or the local dramatic society who came
in to do a christmas carol
or whatever but the choice was there
he also had the choice of when he went
to bed when he got up
he had the choice of what he could
choose to eat
he also had a a load of volunteers that
would come in
specially trained to do meal assist so
there was no rush and he could actually
save her having dinner again which he
had not done for a long long time
he was shared on a daily basis he had
access to the lucky mot as we call it
which is where we fully assess our
guests physical and emotional
requirements
and we refer back to the community he
got access to physiotherapy
he got pressure mapped we looked at
these drugs to see if they were the
right things for him now
his quality of life changed because if
there's one thing
to look forward to every year enemy he's
waiting for his social worker to arrive
and she does arrive and she says to him
robert i've got some really good news
and some bad news i've managed to get
funding for the two weeks at lucky over
christmas and year
the bad news is that the key is going to
be closed by then and it's closing in
the beginning of december
and you will not be able to go to sleep
for christmas
and that was the reality of the
situation at that time
so at that time i was part of a team of
people that worked for the ms society
and part of my res my payment was the
rest quite strategy
and we knew what it meant 500 people
to come to look on a regular basis not
just for them but for their carers
and their children and the extended
family
we were all absolutely devastated
because we knew the implications of what
this would bring
so we asked the ms site to try and
change his mind
and they said no so we started the
safe-looking campaign
to try and orchestrate enough public
interest that would try and make the
society change the mind we did very well
i mean there was articles in the
guardians articles and private eye there
was debates and parliament questions at
westminster
but they still didn't change the mind
however we were due to close the
beginning of december
and four days five days before were due
to close
the chief exec of msi tell us to meet
airport met someone he said marrying
we're considering opening it for um
keeping looking open for another few
months to see if you can set up as an
independent charity
um so we'll give it say three months or
something
and i said well it's kind of something
that we'd like to know
a good few months ago because we have
absolutely no money
we've got no bookings and we're about to
close and
he said well this will give you some
time see how you get on
so off we went that was the monday on
the tuesday i went to the staff bearing
my staff
had jobs to go to they had
uh redundancy money and i said to them
um
at the beginning i'd like to go for this
i know it's a huge risk but i would
really like if some of you could stay
with me
and such was the commitment and the
passion and the values and i'll come
back to that later
but we talked about the tribe early on
the lucky tribe
we're so committed to what we do 75 of
the staff stayed
however we had to pay that staff and we
had no money whatsoever
so my talk today is going to be about
vision and values
commitment and passion who to bring with
you
who are your partners going to be don't
be afraid to ask
and stay true to those values and i'm
going to come back to these as i tell
you the story
so there we were we said we'd go for it
and we had absolutely no money but
because we all had this vision and this
passion
of what we wanted to do it was very easy
to transfer that
into and ask but we didn't ask if you
know what i mean we just said
this is what we'd really like to do we
need help and it was amazing
the amount of help that we got from
anything from fifty p
five pounds five hundred pounds five
thousand and
one aspect one lady came up and said
i'll give you fifty i thought oh my gosh
you might give me a bit more
fifty thousand and
we got no money from scottish government
uh
it was a really difficult time however
we managed to set up and
we raised about just about under 600 000
in those few months
and we launched our new charity on the
4th of july very
very carefully chosen date and we set up
on the 4th of july
at that time i'd literally just
registered the care inspector that
morning
oscar had come through the day before
the transfer agreement with the ms
he hadn't been signed and the lease had
not been negotiated
but we were not letting that date go
past it had to be the fourth of july
the journey was not easy we also changed
the model because the vision we had was
of a country house hotel
specializing in long-term conditions
with high dependency
because of the genetic malformation why
should you have to accept second best
and go to a care of the elderly or
hospital environment for respite
and how could the carers go away and
enjoy a well-earned
rest or break knowing that their loved
one was miserable where they were
so having this holiday environment meant
that the caterers had a wonderful time
because
their loved one was having a wonderful
time that was a win-win situation for us
however it was um very easy
to get to abundant because the the
mountain was so huge in front of us
we're having to raise at least 1.2
million every year
so the fact we raised 600 to set up was
only the first step
and because people had sort of been so
generous at first we couldn't go back
for at least another two or three years
so every year
every first of johnny because our year
was january to december every first of
january you know everybody was like
having a great time i'm thinking
where am i going to get it this year
where am i going to get this money
the staff were completely committed but
then we up we changed the model to all
linked
conditions it was nsmd parks and stroke
so the staff
it was four seven or eleven nights very
complicated model i think of all the
knowledge and everything that we needed
to have the care plans the drugs
everything
for everybody every guest coming but we
wanted to make sure that we had
extended our customer base partly for
the business but also because we wanted
more people to have access to this
unique model that we had
very much a social model food is
fantastic fun
it's a very happy place it's not a sad
place you think it would be but because
everybody was so united and making the
best of the time
made it much easier so when we come back
to
talking about values and that 75
staff stayed with me we all had that
common value
that value and that commitment that
brought us through the first stage
however it was very difficult for the
staff and there was burnout
it was very difficult for everybody
because you know money was paramount but
we also wanted to provide a really good
service
care and spectrum didn't really
understand our model we weren't here
home
and the complexity of the model was
really difficult to understand
however we went through quite a few
details of that but the big thing for us
was the vision we were all united as a
tribe
about the vision of what we wanted to
achieve and also
when we talk about the social aspects
social leadership which was brought up
earlier on this morning
it was very much about that there was a
very open communication
the staff knew that i was behind the
save looking campaign
they knew that i was employed by the ms
society that could have been so easy for
them to have just
um picked up the phone and said it's
nice
but they didn't we were so united in
what we wanted to do
it was very important we had that
authenticity together and that
transparency together so they knew
when things were going good with going
well the same
um so we've talked about the vision
we've talked about the values we've
talked about the passion
and the commitment that even when things
were going really badly and the staff
were really
affected by the amount of
they still stayed with me which i think
is also vitally important
one of the major things is that we
couldn't have done it ourselves we
talked about the collaborations
very quickly i realized hey
what the hell i've done but also
i couldn't do this by myself now the
first partners were obviously the staff
but i had to bring a boarding board and
an advisory board and
we set up another charity as well called
the lucky forever fund
that would hopefully fundraise for
reserves for us because we had no
reserves
so every year the fact that we brought
it in budget because it's a very
expensive model to run was nothing short
of a miracle
itself i was really honored that one of
the first partners that we had
apart from the staff was qmu
petra and joe goldblatt visited and
through them we got access to furniture
from the caledonian hotel
so we immediately were turning it into
this country house hotel only it's again
that vision that we had
and we then developed a much further
partnership through
brendan and others about the student
placement physical plate
placements nursing placements you know
there was the whole thing
when i left i was really hoping to
business students because of the
fundraising aspect that we had to
develop
but it was a synergy that we had which i
think is one of those things i'm
most proud of actually and we also had
major donors why would they give money
to us
we were just a tiny charity in east
lothian so it
became quite apparent that we had to get
right out there as quickly as possible
so we weren't just seeing as a tiny
charity in eastern national respite
centre
so we went from having no bookings to
nothing
between that and the next seven years we
were doing over six thousand dress by
nights
a year for 35 different conditions from
28 local authorities in scotland so yes
we could call ourselves national respite
center
again that vision but that doesn't
happen
you know all the time it brought its own
risks with it
professionally because we were expanding
and we were so
thin on the ground the risks with added
legislation etc etc
were coming more and more to the fore
and personal risks because we were all
in danger of burnout not just the staff
but the management as well
so that is a hard one to when you see
your staff getting their absolute utmost
and you thank them for it but you also
feel incredibly guilty that you're
putting them through it
so there was a whole emotion around
there but there's a lot of transparency
and i have to see
what we talked about earlier on a lot of
love not just for
the guests but between the staff as well
um major donors
i never had to ask them for money i just
told them the story of where we had
how we got here and they gave us money
one major donor said i'll give you this
amount of scottish government match
funds and scottish government did
it took two years of them to do it he
did do it
and because of that we had a bit of
certainty or more certainty
politicians they were fantastic
i immediately went to them when we're
doing the sigil okay campaign
and they had visited lucky a lot of them
had already visited
and they immediately saw
the bereavement aspect of losing service
not just for the guests but actually for
nhs as well because we were saving nhs a
lot of money
[Music]
the um they knew that we
were a very robust service
and for me the model should have been
replicated in glasgow and aberdeen we
shouldn't just have lucky
clothing we should have all over
scotland because it is mopping up all
the issues that long-term conditions
are not being able to be sorted out in
the community just now
until integration gets more mature shall
we see
less embryonic and
so we had that vision started on the
partnerships
we had stubble castle when i went to
stubble castle first of all when i said
steven i want to be slicky on snowboard
castle and event
not for money not for profit and i said
no we're probably going to have a
deficit a million he said you're
absolutely crazy
and i said but i really once said bring
your managers down stay overnight let
them see
what stubble does and that just it made
managers click
straight away about what we were trying
to achieve the caledonian were fantastic
with all the furniture we got the bell
moral
because we had this hospitality aspect
it was you know health and social care
but with hospitality
uh the bill mortal took us on as a legal
furniture obviously
and some furnishings but they took us on
as
uh um they took us on as a model
of how they can help not just for money
marketing help
our staff got trained by housekeeping
our staff got trained by reception
so if i come back to what let's see
if you think you've nailed it you feel
that never give up
if you think you've done it never be
complacent because there's always
something coming around the corner
and be prepared for that plan a b and c
and stick to your values and do not
be afraid to ask that's the big one
never feel
never don't think oh i can't ask that
person you can
they can only see now