Children’s Hospice Association Scotland Supporters’ Newsletter Autumn/Winter 2012
Chat
CHAS
2
Time for
CHAS
3 One Family,
One Passion
8 Two Minutes
with… Robert
PLAYTIME WITH CHAS
How activities help create fun, unique
and cherished times for families in
difficult circumstances
Photo: RobMcDougall.com
Inside this
issue...
C H A S Chat
UPDATE
TIME FOR CHAS
Welcome to another edition of CHAS
Chat. Like me, I’m sure there are
times when you think ‘where has the
day gone?’. Time for families who
use our hospice services is even
more precious as they juggle all sorts
of challenges each day. Visiting our
hospices or receiving care at home
offers a great opportunity to take
time out to have a bit of fun and
relax. For children and young people
like Kyle, it’s a chance to have some
amazing experiences (find out more
on p4).
Time is precious for all of us but it’s even
more precious when your daughter has a
life-shortening condition. That’s why
mum Caroline wants to spend as much
time as possible with her daughter Ayla
making every moment special, as she
explains below:
Thanks to your help and support,
families can put their worries to one
side with CHAS for a little while and
make the most of their precious time.
In this issue we talk to three
generations of one family whose
passion for CHAS drives them to
raise money in their local community
(see p3). If you have time on your
hands, then let CHAS give you a
few ideas on how you can make a
difference to someone’s life
(see p6-7).
Get ready for a good read. Until next
time…
Lisa Bargon, Editor
CHAS is a charity that provides the
only hospice services in Scotland
for children and young people who
have life-shortening conditions for
which there is no known cure.
CHAS runs two children’s hospices,
Rachel House in Kinross and Robin
House in Balloch, and a home care
service called CHAS at Home.
www.chas.org.uk
2 Autumn/Winter 2012
“I didn’t anticipate having to deal with
the medical paraphernalia and regime,
and the utterly terrifying moments I
would face to keep my precious girl alive
when she was born. At Rachel House the
moments don’t have to be terrifying
though, they can be exhilarating and
endearing. I saw my girl engage for the
first time with the colour changing
snowflakes and the bubble tube in the
multi sensory room. I’m not sure how
many memories I’ll be able to make with
Ayla but CHAS lets me seize every
moment.”
HOSPICE PHARMACIST
CHAS has years of experience and
expertise in children’s palliative care but
today we are caring for more children and
young people with complex care needs
than ever before.
We have been working hand in hand with
some Scottish Health Boards to review and
improve the quality of medical care we
provide to families. As a result, CHAS is
leading the way by creating a new Hospice
Pharmacist post – there are currently no
other such specialist paediatric palliative
care pharmacists in Scotland.
The pharmacist will bring a specialist level
of expertise to CHAS. They will support
doctors and nurses who are prescribing
medication, so that a child’s symptoms can
be treated in the most effective and safest
way possible to ease their pain and
discomfort.
We plan to share this knowledge with
research departments in Scottish
universities.
CHAS has launched a new fundraising
initiative called ’Time for CHAS’ and we
are asking people to take time out with
others to create their own special times.
Why not hold a fun event for CHAS to
share with people around you – family,
friends and colleagues – and help
families like Ayla’s while you’re doing it?
Or why not take the time to make a
donation? Find out more at
www.chas.org.uk
Photo: Simon Harbisher
WELCOME
MUM CAROLINE AND DAUGHTER AYLA SHARE A
TENDER MOMENT.
VALUING
VOLUNTEERS
CHAS is proud to announce that we’re the
first charity in Scotland to achieve the
‘Investing in Volunteers’ award for the
third time in a row. This prestigious award
is the UK quality standard which
measures excellence in how organisations
manage their volunteers.
Karen Filsell, CHAS Volunteering
Development Manager, said: “Volunteers
support CHAS in every area of our work –
raising money to pay for vital care,
providing administrative support… the list
is endless.
“We really do value our volunteers – they
gave an astonishing 80,600 hours to
CHAS in 2011-12. We are committed to
investing our time and resources in
supporting them as we recruit and train
them, and help them to develop their
skills. It’s wonderful to have this external
recognition and shows that CHAS is a
great place to volunteer!”
C H A S Chat
BEHIND THE SCENES
Families often describe our hospices as
a “home from home”. Kelly Duffy is one
of the housekeepers at Rachel House
making sure that every time a family
visits the hospice they feel welcome and
comfortable as soon as they walk
through the door. Kelly tells us about
her role:
“The times I enjoy most is meeting
the families and chatting away to
them all. One mum said the
housekeepers are like her therapists,
always there for her to talk to. Also,
every day is different and there’s always
something new going on in Rachel
House.
“My job involves taking time to help
look after the hospice by keeping it
clean and tidy, doing laundry, and
hoovering. We make up each family’s
bedroom so they have everything they
need. We put freshly folded towels on
the bed, and also soap, shampoo, body
lotion and shower gel in the en-suite
bathroom. It adds to the feeling of a
retreat – families feel they can relax and
not have to worry about the things they
would do at home.
“My favourite memory is difficult to
choose – there are so many! It was
really great seeing the new Young
Adults Area come together so the
young adults can be more independent.
But my favourite time of the year has to
be Christmas – it’s a really special time
when the tree goes up and the
children’s faces just light up.
“Lots of people hear the word ‘hospice’
and think Rachel House is a sad place
but it’s really not.”
HOUSEKEEPER KELLY MAKES SURE RACHEL
HOUSE IS WELCOMING FOR FAMILIES.
Did you know?
In 2011-12, CHAS supported over
340 children and young people, as
well as their families.
ONE FAMILY, ONE PASSION
Anne, Karen and Andrea are not just
CHAS volunteers – they are three
generations of one family who tirelessly
give their time for CHAS.
Anne (Gran): “My husband Andrew
volunteered for CHAS and I decided to
help too! I do bucket shakes,
encouraging people to give their loose
change for CHAS. I just love what CHAS
does and how it helps so many families.
The CHAS fundraising team are so
helpful and go out of their way to
support us.”
Karen (Daughter): “One time my mum
wasn’t well enough to help at a bucket
shake, so I went along instead. I had such
a good time, I decided there and then to
become a volunteer. It’s great to be out
in the community meeting so many
people. I really enjoy it and know the
money we collect helps CHAS so much.”
THREE GENERATIONS OF ONE FAMILY TAKE
TIME OUT TO RAISE MONEY FOR CHAS.
Andrea (Grandaughter): “I’ve been
helping out my Gran and my Aunt Karen
at bucket shakes but now I also
look after CHAS collecting cans in
Newmilns.
I pick up cans from local places, and
count the money and bank it. I also look
out for new places where I could put
cans. I’ve been to Robin House and it was
amazing to see how my volunteering
helps. I also love being able to spend time
doing something worthwhile with my
Gran and Aunt Karen.”
Take time out to become a
fundraising volunteer in
your local area.
Anne, Karen and Andrea say: “Go
for it! It’s good fun and it doesn’t
take up a lot of your time – just a
couple of hours now and again –
but it makes a huge difference to
CHAS!”
Call your nearest fundraising office
now (details on back page).
For information on all volunteering opportunities visit www.chas.org.uk or
call 0131 444 1900.
Autumn/Winter 2012
3
C H A S Chat
PLAYTIME WITH
“One of the most
important things
is to give families
special times
together."
Whether it’s water therapy,
games, music or art, at CHAS
we know it’s all about having
fun and creating precious
memories. There’s little or no
time for families to fit in these
activities at home, so that’s
where CHAS comes in to make
a real difference to their lives.
Freedom and fun in the water
Kyle is 14 and loves going in the pool, but
this is no ordinary trip to the pool. It’s one
of the few times Kyle is able to have any
freedom of movement. Kyle has
Duchenne Muscular Dystrophy and
spends most of his time in a wheelchair.
Kyle says: “To get out of my wheelchair
and be able to move myself around freely
and independently, and have fun, is
brilliant and feels fantastic.”
The only place Kyle can have this
experience is when he visits Robin House.
Community pools don’t have adequate
hoisting facilities to get in and out of the
pool or suitable changing facilities for
Kyle’s needs. Also, the water needs to be
a specific temperature. So it’s no surprise
that the hydrotherapy pool in the hospice
is such a hit with Kyle and other families.
Karen, CHAS Physiotherapist, explains
how water therapy helps: “For Kyle, the
warm water induces relaxation and
relieves tight and painful muscles. The
buoyancy of the water supports his body
and gives a sense of weightlessness that
allows him to move more freely.
4 Autumn/Winter 2012
DAD GARY LEARNS HOW TO DO WATER EXCERCISES WITH DAUGHTER CORA.
“A lot of children and young people we
care for have very little to no active
movement. It means muscles get very
tight and sore. The water in the
hydrotherapy pool is kept at a
temperature of 34-34.5 degrees, which
relaxes muscles making it easier for the
child or young person to stretch and
move their arms and legs.
“One of the most important things is to
give families special times together. We’ve
had little new born babies experience the
pool, perhaps for the first and last time in
their short lives, but the special memories
and photographs are there for the family
to always cherish.”
“We’ve just had a Dads and Daughters
weekend. Dads took their daughters in
the pool with me and I taught them how
to hold the girls safely in the water, and
gave them some hints on exercises to
do to stretch out limbs. The dads
quickly gained confidence and enjoyed
their time together in the water.”
Aside from the medical benefits, it’s just
really good fun, as Karen explains:
THIS IS ONE OF THE FEW TIMES KYLE HAS FREEDOM
OF MOVEMENT.
C H A S Chat
Photo: RobMcDougall.com
CHAS
SEAN LOVES MUSIC ACTIVITIES WHEN HE VISITS RACHEL HOUSE.
Time for imagination and play
This is only one example of how activities
are carefully planned around the needs and
interests of children staying. Alison, CHAS
Activities Co-ordinator, explains:
“We spend time with the children and
young people to find out what they enjoy
and respond well to. One time we made a
special ‘My Winter’ book for a child who is
blind. It describes winter but the pages are
made up of materials, not paper. Crunched
up foil makes the sound for ice; soft cotton
wool has the feel of the soft snow; and
bubble wrap makes the sound of snow
popping under feet when you press it.”
It’s also a chance for kids just to be kids and
forget about their illness. One mum
CHAS also provides activities in the
family’s home for those who are unable
to make the trip to the hospices, or
need support from the homecare team.
Yvonne, CHAS at Home Support
Worker, explains: “When we visit, we
take play items with us that the child
will like. Parents love the fact that we
do this and it’s what makes CHAS so
special; other care providers often
don’t have the time or the resources.
We do much more than just giving
nursing care.”
Yvonne recalls when she helped
recreate a beach in a family’s living
room: “We brought a plastic pool, sand
and water. We were pretending that we
could see things like fish in the water.
It was a bit of a crazy thing to do but it
was such a laugh for the whole family.”
Siblings can be part of activities too.
Val from the CHAS at Home team said:
“Muriel and I visit one family regularly
so that mum and dad can get out for an
evening. Morven’s sister Eloise loves
baking so one time we decided to make
cakes. Morven joined in too as she loves
being part of things. We all got very
messy but that’s what made it so much
fun!”
“Ava and I have just been on a fairy hunt
looking for fairies and princesses under the
bushes in the garden, dressed as fairies”,
says Carla from the activities team at
Rachel House.
Although Ava and Carla didn’t find any
fairies Carla, CHAS Activities Facilitator,
recalls: “Ava’s squeals of excitement showed
how much she enjoyed being part of the
tale, rather than just listening to someone
else doing it in a storybook. It’s about
expanding imagination and having fun.”
Play at home
LIAM AND BROTHER JOSH PLAYING SUPERHEROES.
said: “We enjoy all the activities. People
are scared of looking after Liam, so it’s nice
that we can come here with his brothers
and just join in – he can just be a kid and it
doesn’t matter what’s wrong.”
Activities are important for the family too.
At home parents are so busy caring there
is rarely time for play. At the hospice they
can just be mum and dad, and share
special times. Carla recalls a special
moment: “I remember a baby, just weeks
old. Although she couldn’t hear, she was
lying on a harp so she could feel the
sensation of the music and the vibration
of the strings. She was absolutely
mesmerised. It was just lovely to watch.
She died a week later so it’s a cherished
memory for her parents.”
It is only with your help and generosity
that CHAS is able to give families the
chance to make the most of life,
whatever the circumstances. Thank you.
SISTERS MORVEN AND ELOISE SHOW OFF THEIR
BAKING SKILLS.
Autumn/Winter 2012
5
C H A S Chat
HOW YOU CAN
NO TIME TO MAKE A WILL?
Login2Law is quick and convenient, whilst giving the
reassurance that you’re dealing with qualified professionals –
great for busy people!”
Making a Will is probably on a lot of
people’s ‘to do’ lists but for many of
us, it never reaches the top of the
list. Shirley Phillips, Associate
Solicitor with Thorntons Law LLP,
explains how important it is to
make a Will, and how easy it can be.
How does it help CHAS?
It’s about peace of mind
“Making a Will is a simple way to be certain that the people
and causes you care about are looked after in the event of
your death. It’s the only way to ensure that your wishes
and instructions are followed. Getting this in place when
you’re fit and able makes perfect sense, and gives you peace
of mind.”
“Making a Will with Login2Law can help CHAS in two ways.
Using code ‘CHAS10’ means 10% of the cost of making the
Will goes to CHAS. People can also leave a gift to CHAS in
their Will which could potentially reduce or eliminate the
Inheritance Tax on their estate.”
What do people leave in their Will?
How easy is it to do?
“One of the many ways people can give to CHAS is to leave
money in their Will. It doesn’t necessarily have to be a big
amount, just whatever they can afford – what might seem
like a small gesture can make a big difference to a charity
like CHAS.”
“People can now make a Will from the comfort of their own
home using Thorntons’ new website www.Login2Law.co.uk.
Thank you to Shirley for her time and expertise.
DECLUTTER AND DONATE
ON EBAY
25% SHOPPING
DISCOUNT
Are you one of millions of
people spending time selling
items on eBay every day? If
so, you can help CHAS every
time you sell an item. Just
follow our easy five step guide
to set up what percentage of
the final selling price you want
to donate to CHAS.
3. Choose a percentage (between
Spend £25 on a range of items such
as children’s gifts, jewellery and
garden products at our online shop
and receive an exclusive 25%
discount on your next online order!
Go to www.chas.org.uk/shop and
enter promotion code
SUPPORTCHAS at the checkout.
It’s the perfect way to shop with
100% profit going to CHAS.
1. Once you’re ready to sell your item
5. If you are a UK taxpayer don’t
choose the ‘Advanced Sell’ listing
option.
2. List your item and look for the
section ‘Raise Money for your
Favourite Charity through eBay’.
Next, select ‘Search another
charity’ to find Children’s Hospice
Association Scotland and choose
‘Select’.
6 Autumn/Winter 2012
10% and 100%) of your final selling
price that you want to donate to
CHAS.
Job done, now wait for your item
to sell!
4. When your item has sold, eBay’s
charity partner MissionFish will
automatically collect the donation
from you.
forget Gift Aid. Simply tick the Gift
Aid box when you first list an item
for CHAS. Using Gift Aid means
that for every pound you give,
CHAS will receive an extra 25p
from the government making your
donation go even further.
Have a fun time selling! Thanks.
Discount is only available on gifts
(excludes Christmas cards, diaries
and calendars). Offer expires 30
November 2012.
Did you know?
It takes on average 400 shifts
every month to run our charity
and online shops. Could you
spare a couple of hours of your
time to help? Call 01577 867810
or email [email protected]
C H A S Chat
HELP CHAS
REAL INSPIRATION
Real Radio’s Bring A Pound To Work Day
2012 wasn’t only a day to raise money
for CHAS, it was a day to be creative
and do something fun and worthwhile.
Some supporters went further than
donating £1 by holding crazy fundraising
escapades including frozen bath dunks,
treasure hunts and dressing up as
cartoon characters.
Our hospices got in on the action too. In
Robin House everywhere you looked
there were green and pink faces as
families, staff and volunteers dressed
up as Kermit and Miss Piggy from the
Muppets. Real Radio presenter Paul
Harper added to the excitement by
broadcasting live from the hospice, and
having a makeover at the same time!
An astonishing £100,000 was raised in
one day from individuals, businesses,
schools and groups all across Scotland.
The enthusiasm was a real inspiration
and showed how every pound donated
made a big difference.
We really look forward to making 2013
the biggest and best yet. So put
Thursday 7 March 2013 in your diary
now and start thinking about what wild
and wacky fundraising ideas you could
do. If you can’t wait that long and
you’ve got a great fundraising idea
bursting to get out, then get in touch
with your nearest fundraising office
(details on back page).
MUPPET MANIA AS CHILDREN, STAFF AND
VOLUNTEERS HAVE A MAKEOVER DURING
BRING A POUND TO WORK DAY.
Join Team CHAS
MISSION
POSSIBLE
A whopping £94,000 was raised
through CHAS collecting cans last year
thanks to the generous support of the
public.
There are all kinds of fantastic events that you can take part in to raise
money for CHAS – what will you choose? Find out more at
www.chas.org.uk/events_and_appeals/events
Did you know?
Every day it costs over £21,000 to run CHAS care services.
Now we have a mission to raise
£100,000 this year. Can you find at
least one location that we could place
a CHAS can? One supporter spotted an
opportunity in their local Co-op store in
Falkirk and it has even lead to staff
raising funds for CHAS. Brilliant!
It doesn’t have to be a large company.
It could be anything from your work’s
staff room or canteen, or perhaps a
shop, bar, pub, restaurant, café or
checkout. No place is too small – those
pennies really do add up!
Should you wish to accept this
mission, an extra £6,000 could pay for
an Activities Facilitator for over two
months to help families create special
memories. Let us know by contacting
your nearest fundraising office (details
on back page).
AHOY! EVERYONE AT ROBIN HOUSE IS READY TO SET SAIL ON THE JOLLY ROBIN… WE’LL TELL YOU
MORE IN THE NEXT ISSUE.
Autumn/Winter 2012
5
7
C H A S Chat
CONTACT US
TOUCHING RAINBOWS
The book is a collection of stories,
poems and pictures from children
with life-shortening conditions and
their family members.
CHAS Kinross
tel: 01577 865222
email: [email protected]
“We have good friends in the staff
group and with other young people
who use the hospice. The hospice for
us is a place for the living.”
(Sean and Kyle)
CHAS Edinburgh
tel: 0131 444 1515
email: [email protected]
CHAS Aberdeen
tel: 01224 645000
email: [email protected]
To find out more about the book, go
to www.icpcn.org.uk
We are very proud of Kyle, Sean,
Nicole and Rebecca. Their beautiful
stories and poems show courage and
joy, despite so many challenges. Here
are some extracts from the book:
“Saying goodbye was very hard but
reading Waterbugs and Dragonflies
helps me to understand that I need to
wait my turn until I see you again…”
(Rebecca)
CHAS Glasgow
tel: 0141 779 6180
email: [email protected]
“I realised that Robin House is a lot
different from what I first imagined or
feared.” (Nicole)
Photo: Daily Record
CHAS is very privileged to have
budding writers in our midst. Kyle (18),
Sean (19), Nicole (17) and Rebecca (13)
who visit Robin House are now
internationally published authors
after being selected for a book called
‘Touching Rainbows: Acknowledging
the Child's Voice in Palliative Care’.
Gift Shop
tel: 01577 865557
email: [email protected]
Bazaar (charity shop)
tel: 01577 861380
email: [email protected]
Bazaar 2 (charity shop)
tel: 01577 865190
email: [email protected]
BUDDING WRITERS FROM ROBIN HOUSE.
Head Office
tel: 0131 444 1900
email: [email protected]
Canal Court
42 Craiglockhart Avenue
Edinburgh EH14 1LT
TWO MINUTES WITH… ROBERT
“Hello there! My name is Robert
Watson.
“I've been the Chairperson of the
CHAS Young Adult Council for about
four years now. The group was set up
to try and improve respite services for
the young adult age group, both
within CHAS and working in
partnership with other organisations.
It’s to ensure there are services for
young adults to move onto once they
have outgrown the children's hospice
environment. Sadly, such services are
non-existent at the moment and this
needs to change.
“I try to keep myself as busy as I can.
I graduated from Paisley University
with a 2:1 honours degree in BSc
Computer Games Technology which I
spent four years at university to
achieve. I like to get out and about. I
go to football matches, concerts, the
cinema and nightclubs. I’ve got a few
events coming up this month: I’m
going to see one of my favourite
bands, Blink 182, at the SECC.
“Also, six months ago I discovered a
Powerchair Football Club in Glasgow.
It’s the only club of its kind in
Scotland. It’s good fun and can be
played by anyone, even if like me you
have very little upper body strength.
It’s on Tuesday evening from 7pm to
8.30pm and the more people we get
playing this cool sport, the better!
Check out this website to find
out more
glasgowcitypowerchairfc.weebly.com/
index.html
Bye for now, Robert”
www.facebook.com/
childrenshospiceassociationscotland
www.twitter.com/supportchas
www.youtube.com/CHAScharity
Tell us if you would prefer to receive
CHAS Chat by emailing us at
[email protected]
Children’s
Hospice
Association
Scotland
Children,young
people and
their families
at the heart of
all we do.
ROBERT LOOKS SMART FOR A CHAS
FUNDRAISING EVENT.
8 Autumn/Winter 2012
www.chas.org.uk
Scottish charity number SC 019724