Children’s Hospice Association Scotland Supporters’ Newsletter Autumn/Winter 2010

Inside this issue...

3 Giving Families a Breather

6 A Volunteer’sDedication

8 Jump Into Action

MUSIC IS THE BEST MEDICINESinger-Songwriter

Leon Jacksonvisits Rachel House

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CHAS NEWS

Congratulations to the first ever winnersof the CHAS Mum/Dad of the YearCompetition, Mrs Marina McDonald andMr Philip Fletcher.

The competition, run in partnershipwith the Aberdeen Evening Express,searched for a mum and dad in theNorth East of Scotland to win the coveted title.

It has been a great opportunity toincrease awareness of CHAS in the area,so thank you to everyone involved.

Did you know that by clearing out theirwardrobes, the people of Scotland havehelped to raise over £100,000 for CHASthrough our Clothes Aid partnership?

Pauline Tanbini, CHAS Retail Manager,said, “To have reached such an impressive amount after just 12 monthsis wonderful. Thank you to every personwho has reached into their wardrobe andfilled a bag to help CHAS.”

We are delighted to announce that thehighly successful partnership is due tocontinue throughout 2010. So, if aClothes Aid bag pops through your letterbox, please do fill it up if you can.

As well as raising vital funds for CHASby donating your unwanted clothes,shoes and bedding, you are also helpingthe environment by diverting tonnes oftextiles from landfill sites across Scotlandeach year.

To find out more about Clothes Aid orto arrange a collection, visit www.clothesaid.co.uk. If you have aquery about collection dates, please contact Clothes Aid on 08450 722780.

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Welcome to another edition of CHASChat bringing you more news from allareas of the charity. Highlights in thisissue include a look at how musichelps children and young people toexpress themselves (pg 4) and whyvisits to Robin House make such a difference to the Rule family (pg 3).

We are delighted that we receivedsome positive responses to this new-look magazine. Do tell us whatyou think by emailinginfo@chas.org.uk, we’d love to hearfrom you. Thank you for your continuing support and interest in CHAS.

The CHAS Chat Team

MUM/DAD OF THE YEAR

WELCOME

SOCIAL WORKERAWARD

CLOTHES AIDCHAS runs the only hospice services in Scotland for childrenand young people who have life-shortening conditions for whichthere is no known cure.

In September 2008, the ScottishGovernment launched ‘Living and DyingWell’ - a national action plan to improvepalliative care in Scotland.

Dr Pat Carragher, CHAS MedicalDirector, was invited to lead a workinggroup that looks specifically at how medical professionals provide palliativeand end of life care for children and young people – so CHAS is playing a leading role on this issue.

The working group includes two hospice staff, a bereaved parent and twoyoung people who use CHAS services.

The group have presented recommendations to the ScottishGovernment and is awaiting their response.

CHAS INFLUENCINGGOVERNMENT

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SHARON WITH HERHIGHLY COMMENDEDAWARD.

ROYAL MAIL WORKERS HELP TO COLLECTDONATED CLOTHES, SHOES AND BEDDING.

We were delighted when SharonBallingall, our Social Worker for YoungPeople in Rachel House, was nominatedfor the British Association of SocialWorkers (Scotland) Social Worker of theYear Award. Sharon was nominated forthe award by one of the young peopleshe works with, Charlene Gray.

Sharon received a Highly Commended Award for her inspirational work – massive congratulations to her.

PHOTO: Douglas Robertson

GIVING FAMILIES A BREATHER

care which is both physically and mentally exhausting, your brain neverrelaxes.” At Robin House Julie and Nicolecan spend quality time together or Juliecan read a book, relax with Reiki treatments or simply enjoy a good night’s sleep.

Spending time with other families hasproved invaluable to Julie who now has aclose group of supportive friends she’smet at Robin House. “You get close to theother families” explains Julie, “it’s good totalk to other parents who are goingthrough the same thing as you and youdon’t have to explain yourself as you’re allin the same boat.

“Erin gets such a lot out of Robin House.Her favourite activity is the hydrotherapypool which she enjoys with her sister. Thewater supports her body which is a fantastic feeling for her. The other weekshe also met the two Therapet dogs thatare used to being petted and made a fussof. Seeing Erin’s smiling face wasabsolutely priceless. Erin doesn’t feel anydifferent from any other little girl whenshe’s at Robin House, she’s just one of thekids…she’s just Erin.”

THE HYDROTHERAPY POOL IS ONE OF ERIN’S FAVOURITE PLACES IN ROBIN HOUSE.

Caring for a child or young person

with a life-limiting condition is a

physical and emotional full-time job

for families who use CHAS services.

Short, planned breaks at our hospices

provide essential respite for families

offering a ‘home from home’

environment with time to relax and

recharge their batteries. Here Julie

Rule tells us how breaks at

Robin House differ from life at home

for her and her daughters Erin (11),

who has a genetic degenerative

condition spinocerebellar ataxia, and

Nicole (14). They have been visiting

the hospice since 2008.

“It’s wonderful to be at Robin House”says Julie. “There’s such a feeling ofrelease that Erin is being looked afterand being entertained, so it means Nicoleand I can breathe freely. Robin House hasbeen purposely built so there are big,wide corridors and spaces for Erin tospeed about in her wheelchair and I don’thave to worry. At home everywhere hasto be clear of clutter because somethingas simple as a coffee table would get inthe way of her wheelchair.”

It’s only been in the last year that workto complete an extension to the Rulefamily’s house has been finished. Erin is afull-time wheelchair user so she is unableto climb the stairs at home. As Erin hasgot older, the family has become unableto physically carry Erin up and down thestairs, so they extended the house to provide Erin with a bedroom downstairs. “Erin’s bedroom” Julieexplains, “looks so ‘medical’ as it’s goteverything she needs, like her hospitalbed, hoist and her two wheelchairs. Itdoesn’t look like the bedrooms at RobinHouse where they cleverly tuck theequipment out of sight. We do what wecan, but it doesn’t look like a little girl’sroom.

“At home, whole days can go by and youdon’t even realise it. I find myself rushingabout all day and Erin needs 24 hour

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ERIN AND CRAIG (LEFT) ARE INSEPARABLEAND HAD A PRETEND WEDDING AT THE HOSPICE.

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“It’s wonderful to be at Robin House”says Julie. “There’s such a feeling of release that Erin is being looked after and being entertained.”

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MUSIC IS THE BEST ME

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Autumn/Winter 2010

“Music touches everyone, no matterwhat their disability.”

It has famously been said that“where words fail, musicspeaks”. Rachel House andRobin House are proof of thisthanks to their regular musicsessions. While many of thechildren and young people wehelp are unable to communicateusing words, music is the universal language that allowsthem to express themselvesfreely.

For some families, their child’s reactionduring a music session can be astonishing. Like Shahida’s excitement ather son’s response during a recent musicsession at Rachel House, “I haven’t seenAvais so animated in such a long time. Hecan’t stop smiling and I’ve never seen himmove about so much. It’s amazing!” (see photo on pg 5).

At CHAS we want to provide children andyoung people with experiences thatenhance their quality of life. Alison Blairfrom the activities team says, “Musictouches everyone, no matter what theirdisability. People of all ages and abilitiescan respond to it in their own way.Percussion instruments, such as bells ortambourines, are particularly good forchildren who cannot hear or hold theinstruments as they can feel the vibrations and pick up rhythms, so musiccan be a physical sensation too. Theemphasis is on what they can do – notwhat they can’t do.”

During a child’s visit to the hospices CHAScan provide a range of musical activities

which can be tailored for one individualchild or carried out in a group. Activitiesrange from listening to a musical storybook to singing and playing withmusical instruments.

Musical trips out are also a popular

favourite. Alison fondly remembers a visit

to the Royal Concert Hall, “Felicity loved

every second of the concert. She couldn’t

walk and had limited movement, but she

nearly jumped out of her chair in

excitement. Her mum and dad were crying

as they couldn’t believe how much she was

expressing herself.”

Thanks to your support CHAS is able to

provide regular music therapy sessions at

the hospices – Nordoff-Robbins Music

Therapy in Scotland visit Rachel House

and Jesse’s Fund visit Robin House.

Janet McLachlan from Nordoff-Robbins

says, “Children are invited to make music

“I haven’t seen Avais so animated in such a long time. It’s amazing!”

ABOVE: STRUAN BEAMS WITH DELIGHT DURING A MUSIC SESSION.

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If you haven’t already booked a hospice tour, there are still spacesavailable to come on the autumntours at Rachel House in Kinross andRobin House in Balloch.

It’s your chance to see how your support makes a real difference tofamilies’ lives. The free tour will giveyou a special insight into what a children’s hospice is really like, wherethe emphasis is on making short livesas full and happy as possible. CHAS marks its 18th birthday thisyear, so tours will be extra special.

Rachel House tours take place onWednesday 29 and Thursday 30September. Call 01577 865222 tobook a tour.

Robin House tours take place onTuesday 28 and Wednesday 29September. Call 0141 779 6180 tobook a tour.

Phone us now to book your place and avoid disappointment. You arewelcome to bring up to seven guestswith you and refreshments will beprovided.

No family visits are planned duringthe tours but it is open for emergency visits.

AUTUMN TOURSDICINE

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“Her mum and dad were crying as they couldn’t believe how much she was expressing herself.”

in whatever way they can. Their responses,which can range from exuberant instrumental playing to the quiet rhythm of a child breathing, form the basis of themusical interaction with the therapist. Forsome children, the session offers a meansof sharing, celebration and fun. For others,the music can enable children to find newways to communicate, to help themprocess their feelings or to find peace.”

The hospices enjoy visits from a range ofmusicians, from unsigned bands to popular celebrities, who spend time meeting and interacting with the childrenand young people staying. Recent visitshave included Sharleen Spiteri andLeon Jackson (see picture on front cover).

“Music is also a great way for many of theyoung people, who feel isolated because ofthe disabilities caused by their condition, todevelop a sense of sharing and socialising”says Lilian Stewart from the activities team. Robin House has a teenage den with access to a music system, MTV, and a drum set. Lilian laughs as she says,“The boys are in just now - the walls areshaking!” Both hospices organise themedmusic weekends which are massive hits, such as a DJ weekend when they mixed their own tracks and a trip to T in the Park.

When it comes to music at CHAS, anythinggoes! Quiet and soothing or loud and vibrant, music unlocks reactions that wordsalone cannot reach.

RACHEL HOUSE IN KINROSS.

ABOVE: AVAIS HAVING LOTS OF FUN DURING MUSIC IN HOSPITALS VISIT.

BELOW: NICOLE JOINS IN THE MUSIC SESSION.

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HELPING CHAS

CHAS retail volunteers and staff havebeen busy strolling, strutting and twirlingdown the catwalk, modelling clothesavailable to buy from the CHAS Bazaarcharity shops.

CHAS volunteers have been vital in thesuccess of the charity fashion showsheld for groups, such as the Guilds,which have raised £3,500 for CHAS inthe past six months.

If you belong to a group, we would bedelighted to put on a show for you andall the clothes modelled on the catwalkwill be on sale. Outfits range from casualand holiday wear, to glamorous and wedding outfits.

Although we may not be Kate Moss orNaomi Campbell, it’s a great way to havefun while raising money for CHAS at thesame time. Call Liz or Jess on 01577 861380.

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CHAS recently waved a fond farewellto Andrea Cail, CHAS Director ofService Development.

Andrea was first appointed as Headof Care at Rachel House, Scotland’sfirst children’s hospice, in 1995.Andrea was instrumental in workingwith the very first families who visited Rachel House to ensure theyreceived the best standards of care.

Andrea said, “I have worked for CHAS

nearly half my working life and during

this time I have worked with many

amazing staff, volunteers and

inspirational children and young people.

Everything that they have taught me,

I will take with me.”

Andrea will take up the post of

General Manager at Derian House

Children’s Hospice in Chorley,

Lancashire. We wish her all the best

for the future.

A FOND FAREWELL

FASHION SHOWS

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CHAS VOLUNTEER FRANCES HOUSTON MODELSONE OF THE LOVELY OUTFITS.

A VOLUNTEER’S DEDICATIONCHAS is very fortunate to have many dedicated volunteers. CHAS Chat speaksto one such volunteer, Lesley Long, age 23. Lesley has been supporting CHASsince she was a 16 year old pupil at Kinross High School.

1. Why did you start volunteering for CHAS?

Rachel House is very well supported in Kinross. I wanted to do something myselfto help, so I went and found out!

2. How did you get involved?

When I was at school, I helped in the kitchen at Rachel House on a Saturday orafter school. I missed Rachel House when I went to university in Aberdeen, so I did shifts when I came home during the summer. I know CHAS makes a difference and I still wanted to be involved.

3. What are you doing now?

I have graduated from university as a qualified doctor and now live in Aberdeen.I’m helping with fundraising in the area, marshalling at events and helping atbucket shakes. It’s nice to be a part of CHAS.

4. What have you learnt while volunteering?

I’ve learned how important CHAS is for the wholefamily. I saw how siblings enjoyed dedicated timewith their parents and how much parents appreciated having a break from caring. It hitshome how lucky you are when you see other people going through difficult times. I also learned that a children’s hospice is not a sadplace. It’s not like a hospital; it really is just a bighouse full of cheer.

Thank you to Lesley and all our volunteers

who selflessly give their time and skills to

CHAS to help families.LESLEY DONS A CHAS TABARD TOHELP WITH A BUCKET SHAKE.

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COLOURS OFRACHEL HOUSEDuring May and June, 14 artworks by children and young people who use RachelHouse were displayed at a free art exhibition held at The Gallery, Brunton Theatre,Musselburgh. We didn’t want you to miss out, so here’s a selection of the fantasticartwork.

STRUAN JEFFREY, AGE 13, ‘FUN… FUN… FUN...’

Struan's painting was created by squeezing some paint onto a tray

and allowing him to run his hands all over the tray, mix the colours

and feel the cool sensation of the paint between his fingers.

Throughout the experience Struan was laughing, hence the title.

ALEXANDER BRAITHWAITE, AGE 21, ‘VIEW OF LOCH LEVEN’

Alexander is a keen painter and decided to capture the view of a

nearby loch from the garden at Rachel House.

JADE PENMAN, AGE 11, ‘CLOWNING AROUND’

Jade created her hand print painting of a clown after a visit from

the Clown Doctors who visit Rachel House. Jade particularly loves

their visits and crazy antics. The painting was made by using hand

prints for the clown’s hair and finger prints for the nose and eyes.

ARCHIE CURRAN, AGE 7, ‘IS LUNCH READY YET?’

Archie came up with this idea when deciding what to have for his

lunch after chatting to Grant, one of the cooks in Rachel House.

The picture is a baked potato with cheese.

Our thanks go to Julie Robertson, CHAS activities volunteer, and Gordon Duncan from The Accessible Art Company for

organising the exhibition. Support was also provided for the event by Hangar Framing, East Lothian Council and Brunton

Theatre.

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GET INVOLVED

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JUMP INTO ACTION

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Autumn/Winter 2010

CHAS Glasgowtel: 0141 779 6180 email: glasgow@chas.org.uk

CHAS Kinrosstel: 01577 865222email: kinross@chas.org.uk

CHAS Edinburghtel: 0131 444 1515email: edinburgh@chas.org.uk

CHAS Aberdeentel: 01224 645000email: aberdeen@chas.org.uk

Gift Shoptel: 01577 865557email: retail@chas.org.uk

Bazaar (charity shop)tel: 01577 861380email: retail@chas.org.uk

Bazaar 2 (charity shop)tel: 01577 865190email: retail@chas.org.uk

Head Officetel: 0131 444 1900email: info@chas.org.uk

Canal Court42 Craiglockhart AvenueEdinburgh EH14 1LT

CONTACT US

We are proud to show off our brand new, must-have, CHAS t-shirts! So, you can nowstand out from the crowd when taking part in an event to raise money for CHAS.

To find out what events you can take part in, go to the events section on the CHASwebsite at www.chas.org.uk. Alternatively, why not consider organising your ownevent, such as a walk or swim. It doesn’t have to be a sporty event – what aboutorganising a bring and buy sale, or a coffee morning, for example?

If you belong to a group, our speakers would be delighted to visit and talk about ourwork and the different ways you can help.

Alternatively you can support us by setting up a direct debit for as little as £3 amonth. Whatever you do, it will make a difference to families that CHAS supports.

Just contact your local fundraising office now – contact details are opposite.

A SECRET OFFERThe Festival Theatre in Edinburgh has kindly teamed up with CHAS to offer discountedtickets to see The Secret Garden from Thursday 9 December 2010 to Saturday 8January 2011.

As a friend of CHAS you can buy tickets for just £15 each - up to half price!

Visit www.secretgardenmusical.co.uk for full details on the show.

Call 0131 529 6000 and quote ‘Chosen Charity Offer’ whenbooking. Groups of eight or more should call the Group SalesTeam on 0131 529 6005 to benefit from no booking fees. You can also buy your tickets online at www.festivaltheatre.org.uk, using promotion code TSGCC.

The offer applies to stalls seats only and is available on all performances. It cannot be used in conjunction with any otheroffer/discount. It does not apply to tickets already purchased. Subject to availability. The show is suitable for agesix and above.

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www.chas.org.uk Scottish charity number SC 019724

Please pass this newsletter on to familyand friends so more people can hearabout the work of CHAS.

Did you know you can receive this newsletter by email? Let us know if youwould prefer to receive it electronically by emailing us at info@chas.org.uk

Read about what we are up to on Facebook www.facebook.com/childrenshospiceassociationscotlandand twitter

www.twitter.com/supportchas

CHAS STAFF AND A FAMILY MEMBER MODEL THE BRAND NEW CHAS T-SHIRTS.