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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

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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.

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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

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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’.

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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 retail@chas.org.uk


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

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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: kinross@chas.org.uk

“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: edinburgh@chas.org.uk CHAS Aberdeen tel: 01224 645000 email: aberdeen@chas.org.uk

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: glasgow@chas.org.uk

“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: retail@chas.org.uk Bazaar (charity shop) tel: 01577 861380 email: retail@chas.org.uk Bazaar 2 (charity shop) tel: 01577 865190 email: retail@chas.org.uk

BUDDING WRITERS FROM ROBIN HOUSE.

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

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


CHAS Chat Autumn/Winter 2012