2012 Issue 2ur newsletterMaking the most of short and precious lives with your support

See inside for details on signing up to a Memory Walk this September

www.chsw.org.uk

Registered Charity No. 1003314

To receive the next issue electronically and help us save money please email your full name and address to newsletter@chsw.org.uk with ‘Electronic Newsletter’ in the subject line2

Welcome

Meet the teamEddie Farwell, Co-founder and Chief Executive is delighted to introduce you to members of the CHSW team in each issue.

P 3: Join a Memory Walk

P 4-5: Bereavement and end of life care

P 8-9: Your impact at Charlton Farm

P 6-7: Your impact at Little Bridge House

P 10-11: Your impact at Little Harbour

P 12-13: Gifts in Wills and Updates

P 14-15: Donate and recycle

Julie Gilfoyle - Care Team Leader - Charlton Farm“When a child is nearing the end stage of their life, the family and child can come to us for 24 hour care and support. They may arrive from hospital or home or may already be staying on a respite visit when their child sadly reaches the last days of their life. The family’s contacts will be taken off the regular rota and shifts adapted so that the family is supported every day by those who know them best. Families tell us that this support allows them to feel safe and concentrate on spending every precious minute with their child. The team strive to offer holistic care for the whole family, to walk alongside the family in those last few days, standing back when it feels right or holding their hands when extra support is needed. The sibling team similarly link in closely with any siblings, encouraging them to talk about their brother or sister and sensitively answer any questions they may have. Read Ashley’s family story on page 6 to see the difference your support allows us to make for families.”

The big recycle-read all about it!Forget the Spring clean, this is the big Summer recycle! Read page 15 for details on how recycling can help the charity. You will find a recycling envelope enclosed in this issue. If you aren’t able to use the envelope yourself why not pass it onto a colleague or friend?

Mandy Robbins - Director of Care for CHSW “There are many aspects to the care we offer, from respite and short breaks, dedicated sibling support through to end of life and bereavement care, often for many years. This issue gives you an insight into the bereavement and end of life care we offer and the difference we are able to make due to your ongoing support”. See page 4 for Rose’s story.

The memory ceremonyThe centerpiece to these evenings is the candle lighting memory ceremony. With music and a chance for reflection, these beautiful moments allow walkers an opportunity to remember those we are there to celebrate.

On this extra special girls’ night out, let’s celebrate the lives of loved ones and help raise funds for Children’s Hospice South West!

Register today! You will find a registration form on the back page of this Newsletter or you can register online today at www.chsw.org.uk/memorywalks

Men and women are also needed as volunteers! Please use the form on the reverse to register as a volunteer 3

This September will host our flagship night time Memory Walk events.These special ladies only walks have been described by previous women as ‘inspiring and uplifting’. The events bring together women of all ages who take to the moonlit streets to walk in memory of someone they have loved and lost.

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The routeEach event has a special uniqueness as the night time routes take walkers past the finest town and city landmarks in each location. The walks usually take from 1 ½ - 3 hours.

memory walks

The locationsWith 4 locations there is sure to be a route to suit youExeter - 6 milesFalmouth - 5 milesPlymouth - 5 milesBristol - 7 miles

Did you know? End of life care and support ranges from simple things, such as providing a cup of tea and a listening ear, or more specialist care such as symptom relief, or help with unfamiliar or emotional tasks such as registering a child’s death

An insight into bereavement and end of life care

4 End of life and bereavement care are just two of the aspects of care we offer to families, alongside respite and short break, palliative, sibling support and 24/7 phone support 365 days of the year

A family’s contact with the hospice does not end after their child’s death; Families are offered a bereavement stay or visit to the hospice and are invited back to special Remembering Days as well as specific activities which are open to all families such as our fete and Christmas gatherings. Some families choose to stay in contact for many years after bereavement.

Michelle Watkins whose daughter Rose died at Little Harbour was the first bereaved parent to experience the individual care we provide our families at the time of a child’s death.

“I was unsure about using the hospice and reluctantly agreed to visit. Rose, however knew better. As we stepped through the doors at Little Harbour she was taken

very ill and from then we spent the majority of the time together as a family until she died and up to her funeral. The care staff helped, enveloping us with care, love and support that

continues to this day. Little Harbour proved to be the best possible place for Rose that anyone could wish for - the staff made the worst possible situation into a positive one. There is nothing

good about losing a child. If faced with that dreadful scenario, knowing there is someone to help with the most difficult of decisions makes everything less scary. To be surrounded by the love, care and support given to us is all anyone could ask for and something for which I and my family will be eternally grateful”.

“To be surrounded by the love, care and support given to us is all anyone

could ask for.”

Memories that make a differenceMost of the families come to us for much needed respite care - a further vital part of the care we offer to children and families directly links to the time when a precious life is drawing to a close or has ended. Support is given to the whole family to create precious memories of time spent with their child. The care team recall some memories of the simple things that help make this sad time a time to create cherished memories.

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5For simple ways in which you can help raise money to support this unique care see pages 14 and 15

Sometimes the small things make the biggest difference, with your support we are able to offer care on all levels, to help create these memories that mean so much to families.

“The carer moved a baby into her parents’ room for her final hours.

The room was personalised with pretty lights and flowers and the carer and

parents together decided on what music to play - the baby’s last moments were

very memorable and private to the family.”

“Whilst staying at Little Bridge House I strolled around the gardens with my daughter’s carer Caroline. We spotted the gardener’s gloves left drying on a radiator so my daughter, Caroline and I took them, painted them with PVA glue and sprinkled with glitter! If you saw our gardener you’d know just how funny this trick was!”

Did you know? ‘Wishes’ documents can help families with planning the detail of their child’s final wishes

“An older boy close to end of life arrived to delightedly see a

huge stuffed penguin sitting on his bed! During his stay the penguin was moved to another room where there was more space. On hearing of the move the boy

wrote a letter to staff requesting its return - it was!”

As well as the emotional and practical support we offer we also have a lot of funThere is always much excitement in the house when our feathered friend Star visits. Everyone is delighted when they hear quacks and spot the distinctive bow-tie that signifies Star is around! This famous duck can be seen out and about raising funds for us - to date he has raised almost £2,000 on his fundraising adventures.

Little Bridge House care

Ashley’s speechAshley Henry was just 17 when he died but this brave young man ensured his mum would not be left with any worries generally associated with arranging a funeral. Ashley who suffered from a cardiac condition had been visiting Little Bridge House for three years. When he died suddenly at home his mum found a list of his last wishes including having his funeral at Little Bridge House.

Ashley left a note for her to read some special words at his funeral. “I need you to know that I don’t want any of you to be miserable. I’ve had a good life and am now at peace. I made the most of life and think I fulfilled my purpose so the way I see it I have done what I was here for.”

6 Follow us on Facebook www.facebook.com/chsw1991 or Twitter @chsw

“From the moment we heard the unexpected and very sad news of Ashley’s death we did all we could to

ensure his wishes were granted. Arranging the Order of Service, to liaising with the Funeral Directors to ensure the coffin was painted red and

that his wish of having a horse and carriage for his funeral service was granted.We were able to fulfil Ashley’s wishes whilst his mum could spend time grieving. The family had open access to our special Starborn room

where Ashley lay until the funeral; spending time here the journey begins of coming to terms with their loss.”

Emily, Care Team Member

Did you know? Many families return for many years after their child’s death - typically to remembering events or social events like our fete

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7In each issue we highlight some of the fundraising activities our supporters from across the region have been enjoying. This support is invaluable -Thank you.

Youngsters prove age is no barrier to running a marathonMembers of Forches Youth Club got together on a cold and windy day in April to run a relay marathon after being inspired by a talk from our Chaplain at Little Bridge House. The youngsters went more than one step further as they collectively covered a distance of 108 miles - the equivalent of over 4 marathons!

Turning water into pounds Tarka Springs, a family business based in Langtree, specialise in locally produced bottled water. They’ll donate 2.5p from the sale of

every Devonshire Spring line to us.

A refreshing way to help us raise funds.

Our Friends Gr upsWe have almost 100 Friends Groups all over the region doing a fantastic job of raising hundreds of thousands of pounds each year. The groups provide a vital link to the charity and help raise its profile in each locality; from 1 to 100 members if you wish to start an area Friends Group give us a call today!

From quizzes to dances our supporters have been having fun and raising funds:Clayhidon Country Music Club - £1,530, Culmvalley Inn - £2,000,Taunton Morris Men - £570,The Red Lion Inn, Tedburn St Mary - £2,070

Did you know? We endeavour to tailor the bereavement care a family receives to suit their individual needs, wishes and cultural or faith customs

Raise a smile for Harry

To find out more about Raise a Smile for Harry contact daz0601@talktalk.net8

“Children don’t come here to die they come here to live!”As much fun and laughter as possible is put into the lives of the children we care for, creating a tonic for the family even though they know the unimaginable reality that their future holds.Harry Davies passed away at Charlton Farm in July 2011. Since then his family have fundraised tirelessly through their ‘Raise a Smile for Harry’ campaign. They have held auctions, raffles, a children’s tombola, live music, a circus show and a silent auction raising nearly £6,000 in one night - with a magnificent £10,500 raised in total. In July Harry’s dad is planning a 48 hour sponsored walking challenge around Weston-Super-mare and is calling for people to fundraise £100 to join him for an hour of the walk.

“Harry loved Charlton Farm. He loved playing on the swings, and spent

a lot of time in the kitchen making pancakes! As a family we spent Harry’s last five weeks together at the hospice,

having the support of the care team took some pressure off us at such a

difficult time. The team have become an extended family to us.”

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armCharlton Farm fundraising

Donate it daysJane Smith who works at Charlton Farm helps generate stock to sell in our shops. “Donate it days are being adopted by companies, individuals, groups and associations as a really simple way to fundraise for CHSW - in a nutshell you sort through the things you no longer need, bring them to one central location and we collect them! We can help with all of the logistics - providing you with CHSW bags for donations to be collected in, posters to promote your collection and we can arrange for our van driver to come and collect any donations on a given date.” Contact Jane at Charlton Farm to arrange a donate it day in your area.

For all jewellery loversPhoenix Jewellery has designed an exclusive range of beautiful children’s charms and for every charm or bracelet sold they will be donating us £1. Items can be viewed at www.jonathanlynne.co.uk jewellery, have a look and help us turn charms into pounds.

Bereaved families raise fundsPhilip and Lenka Mackie held a gala dinner at the Bristol Freemasons Lodge in memory of their son Nicholas raising £7,000.Jackie and Ian Humphries’ ball raised nearly £7,000 at Tortworth Court in memory of their daughter Aimee.

To find out more about Raise a Smile for Harry contact daz0601@talktalk.net Charlton Farm is 5 years old this year! 9

Grant Thornton got involved recently

A heartfelt thank you...To Bristol Airport and all our airport collection volunteers for their support with the charity of the year partnership this year. We have so far raised £5,926 from staff fundraising and collections in the terminal.

To NatWest SW Regional Office for taking part in Money Tree Challenge and hoping to grow their £50 into a much bigger donation.To the LV= Skydive team for raising £1,700 from their jumps in Cirencester!

To read more about the care and support offered to families see Rose’s story on page 410

Recent activities at Little Harbour

A holiday for Mum and DadOur families are enjoying their time with us, but not all parents stay with their children. One couple hadn’t had a holiday since their very poorly son was born four years ago. Little one was left with our care team while Mum and Dad enjoyed their first break in far West Cornwall. Mum returned refreshed and relaxed and praised the care team by saying, “I’ve never left him before so I was a bit anxious, but I’m glad I did and I was right to trust you all”.

Eggciting donation

We enjoyed our first Easter with an

abundance of eggs of all sizes - one of them weighed 1 stone! We

raffled it on our March open day and raised

over £200!

Caribbean EasterOn Easter Saturday staff and families enjoyed a taste of the Caribbean at a fun filled party with fancy dress and a treasure hunt! The kitchen was turned into a funky Reggae hut serving fruity, spicy curry and coconut cake. Everyone agreed it was a great day with a truly tropical feel.

Harbour 2 HarbourA book depicting a Cornish community told through photographs of local characters made something of a headline as it sold out in record time, raising over £20,000.David and Jan Penprase’s reprint of the popular first edition is now on sale.

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Making memories is a big part of what we do - let us know if you have memories of CHSW early days 11

A snapshot of our supporter activity

It doesn’t matter what you do, every little helps!

From humble beginningsSt Austell Friends Group recently handed over a cheque for a phenomenal £10,800.00 - the result of much hard work but equally hours of fun. The group was set up in 1993 and the first cheque they presented to CHSW was for £570. Over the years the committee members have been involved in numerous events to raise these funds from sponsored walks, duck races, knit-ins and quizzes to garden parties, tombolas, raffles and coffee mornings.

Grateful thanks to Co-op St Blazey who raised £955 with an additional £400 matched funding from Co-op HQ at their Ladies NightThanks to Cornish Sparkle who are raising funds through online sales of their jewellery over a 3 month period as part of the Money Tree ChallengeWell done to Datasharp who raised £928 in their £1 for 1lb club - for every lb lost in weight the company put a £1 towards Little Harbour and for every lb gained the individual put in a £1! The Club Captain, Ladies Captain & Seniors Captain of Lanhydrock Golf Club, Bodmin raised £3,396

Did you know? When a child comes to us for end of life care they and their family can stay for as long as they need

300 cupcakes raise over £300 poundsHayle Friends Group ran a stall in a flower shop in the town selling homemade cupcakes. 300 cakes were sold in two hours and a scrumptious £378 was raised.

Why is it important to make a Will?It is the only way you can guarantee that your family, friends and favourite causes get what you want from your Estate. If you die without making a Will then you have no control over where your Estate goes after your death.

I like the idea of leaving something to charity in my Will, what are my options? Residual gift - a % of the residue of your Estate after everything else has been taken care of.Pecuniary gift - a fixed sum of money.Or some supporters choose to leave a specific item, previous legacies range from a Steiff teddy to a house.

How easy is it to set up and amend a Will?It’s so easy to create a Will, or amend an existing Will using a codicil.

To find out more about the scheme contact Rob Emery, Legacy & Remembrance Officer for an informal chat on 01271 325270

Anyone leaving 10% or more of their Estate to charity can reduce the inheritance tax due against their Estate from 40% to 36%

The Discounted Will scheme in partnership with three local solicitors enables individuals or couples to make a basic Will at a reduced cost. For each Will written a donation will also be made to the charity at no extra cost to you.

Gifts in Wills

Making the most of short and precious lives across the South West12

Updates

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Making the most of short and precious lives across the South West To find out more ways your organisation can support us please contact us 13

7 seats through 7 countiesEveryone thought they were mad when a team of 7 pals rode a 7 seater bike across three counties. Now they’re doing it all again but this time extending their route to take in 7 counties! Corporate support from Old English Inns has allowed this event to happen and the team are grateful for their hospitality! Watch out for them en-route - visit www.justgiving.com/mag7rideagain to find out more.

Albert Van den Bergh Charitable TrustAsda FoundationCivil Service Insurance Society Charity FundCornwall Council Community FundGarfield Weston FoundationGoldman Sachs GivesHBOS FoundationImerys Employees’ Charitable Trust (Cornwall)LifelitesLloyds TSB Foundation for England and WalesLord & Lady St. Levan Fund administered by the Cornwall Community FoundationMartock Charity ShopPennon GroupSantander Foundation

St. Austell Brewery Charitable TrustSt. James’s Place FoundationThe Bill Butlin Charity TrustThe Bruce Davis Charitable TrustThe Chandris FoundationThe Charles Hayward FoundationThe Childwick TrustThe Clare Milne TrustThe Deloitte FoundationThe Duchy Health Charity LtdThe Federation of Master Builders South West Region Charity Fund LtdThe Good Neighbours TrustThe Gordon Gray TrustThe James Tudor FoundationThe Kay Bain Cancer Charity Trust

The Lynn FoundationThe Norman Family Charitable TrustThe Piet Mendels FoundationThe Rank FoundationThe Wooden Spoon SocietyThe Worshipful Company of CutlersThe Worshipful Company of GrocersThe Worshipful Company of WeaversTony Metherell Charitable TrustTrusthouse Charitable FoundationWinnifred Potter Charitable FoundationWolfson FoundationYorkshire Building Society Charitable Foundation

A very special thank y uBelow are the names of some of the charitable trusts, foundations and grant making organisations who generously supported our Precious Lives Appeal to build Little Harbour. We would like to extend our thanks to all those who have helped make the dream of Little Harbour a reality.

All about retailAccording to research there are many reasons why people may keep hold of items that they never actually use or like! These include

Sentimental value

Worry about being wasteful and the environment

Guilt about getting rid of unwanted gifts

Concern that something may be valuable

What can I donate?Good quality items including: furniture (sofas, chairs, tables, desks, bookcases), clothes (adult, children, baby), footwear, toys, games, books, DVDs, jewellery, homeware, kitchenware, soft furnishings, small electrical items, and baby equipment (cots, high chairs, push chairs).

Where can I donate items?You can drop your donations to any of our hospice receptions or direct to the shops. For a full list of our shops see the back cover of this Newsletter.If you have furniture to donate please call 01271 378796 we may be able to collect it from you free of charge.

Our specialist under 5s store at Tinners Court, Truro, is looking for stock; we can even arrange to collect larger items such as cots from your home. Contact the shop on 01872 858072.

New in BristolWe have 16 charity shops across the region with our newest shops on Zetland Road, Park Street and Southville - check the website for details of a CHSW charity shop opening on a High Street near you!

Moving house?We have partnered with Yeates removals in Bristol so you can donate your unwanted items on the day of your move. We can then sell these in our shops to raise funds! Visit www.yeates.co.uk

Did you know? Since CHSW opened in 1995, the charity has offered care to 386 bereaved families

Did you know? You can Gift Aid your donations to us ask in store or at reception today14

By donating these items to charity rather than throwing them away or keeping them in your loft you can be confident that your items will be raising funds to allow our families time and space to create special memories and receive expert care. If we cannot sell an item we will recycle it.If we receive something unique, quirky or collectable we could also sell it via our eBay store.

The Big Summer Recycle

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This summer we are asking our supporters to go green and recycle to help us raise funds! Through our partnership with Greensource Solutions recycling the following is easy.

Printer and toner cartridges

Mobile phonesPDAs

Satellite navigations MP3 players

Digital camerasLaptops

You can send us small items in the post using the prepaid recycling envelope enclosed. For your work place we can supply a recycling box for your printer cartridges and other items, which will be collected regularly free of charge.

Postage stamps and postcardsSimply tear the corner off your envelopes with the stamp attached - store them up and drop them off to us. We get money for the stamps by weight and more for special stamps and albums.The same goes for old or new postcards as well!

Costume or fine jewelleryWe don’t mind if it’s broken or even an incomplete set! We’ve raised more than £80,000 so far so keep sending it in!

Foreign coinsAny loose holiday change hanging about? We can turn it into pounds and pennies.

If you have any questions about any of the above initiatives or would like to request a recycling box for your work place or additional recycling envelopes for your home please contact us, we would love to hear from you.

Did you know? You can Gift Aid your donations to us ask in store or at reception today 15Follow us on Facebook www.facebook.com/chsw1991 or Twitter @chsw

Celebrating memories with every step

memory walk

Register overleaf and return in the Freepost envelope provided to Children’s Hospice South West FREEPOST (SWB30894) Barnstaple EX31 2ZZOr register online at www.chsw.org.uk/memorywalks

Conditions of entry: I understand that I take part in this event at my own risk and that Children’s Hospice South West will not be liable for any injury that may occur as a result of my participation. I agree that medical advice should be sought from a General Practitioner if I am in any doubt of my physical ability to participate in this event. I am aware that photographs taken during the walk may be used to publicise this event and the work of the charity generally. I agree to abide by the walkers brief that will be issued in my fundraising pack.

We need volunteers! We are calling for men and women to help on the evening with marshalling, handing out goody bags, lighting candles and registration. If you would like to help out or know someone who would please let us know.

Name

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Please return this form to the Freepost address above or using the envelope enclosed in this newsletter

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fRegistered Charity No. 1003314

On this extra special girls’ night out, let’s celebrate the lives of loved ones and help raise funds for Children’s Hospice South West!

Entry form All participants must register to take part. Your place is non-transferable.

Registration fee £10 All walkers must be aged 16 or over and 16-18s must have signed parental consent.

Title First name

We are now required to ask for your CSC code, this is the last 3 digits on the back of your card

CSC code

If you would prefer to give this number over the phone please leave a contact number we can call you on:

Tel .............................................................................................................xxx 123

3-digit security codeFor your security, once your payment has been taken we will not retain this code

Date

Cardholder address (only if different to the above)

Cardholder name

Postcode

Issue no. (if applicable) Start date Expiry dateCard type (3) Mastercard Visa credit Visa debit Maestro

Card number

Payment Please debit my credit/debit card to the amount of: £

I enclose a cheque for £

(Made payable to Children’s Hospice South West) OR

Signature

Please select your walk location

14th September Bristol

15th September Falmouth

29th September Plymouth

5th October Exeter

If you wish to register more you can photocopy this form, or visit www.chsw.org.uk/memorywalks or download additional forms.

Mobile number/otherPostcode

Surname

Email

Home address

Do you have any special reason for taking part?Date of birth

Team name (if applicable)

Do you have any medical conditions or mobility needs that we need to be aware of?

DateParent/Guardian signature

I can confirm that I am above 18 years of age on the day of the event. If 16-18, my parent/guardian has signed to consent to my participation.

If you are taking part with colleagues from work, please let us know the name of your employer Does your employer offer a matched funding scheme?

Emergency contact nameEmergency contact number T shirt size S M L XL 2XL

Dietary requirements for light breakfast Vegetarian Vegan Nut allergy

To reduce costs we will email your fundraising pack, if you prefer this posted tick here

Registered Charity No. 1003314 Registered in England No. 2620879

Children’s Hospice South West (Head Office) Little Bridge House, Redlands Road, Fremington, Barnstaple, Devon EX31 2PZ Tel: 01271 325270

Children’s Hospice South West Charlton Farm, Charlton Drive, Wraxall, North Somerset BS48 1PE Tel: 01275 866600

Children’s Hospice South West Little Harbour, Porthpean Road, Porthpean, St Austell, Cornwall PL26 6AZ Tel: 01726 871800

Find your nearest CHSW shop

Visit us at www.chsw.org.uk or find us on Facebook www.facebook.com/chsw1991 or Twitter @chsw

Barnstaple Tel: 01271 344685Bideford Tel: 01237 238280Exeter Tel: 01392 202193Honiton Tel: 01404 45593 Nailsea Tel: 01275 853261Plymouth Tel: 01752 221990

Portishead Tel: 01275 218483Tavistock Tel: 01822 614888 Truro Tel: 01872 278466St.Austell Tel: 01726 70799Wellington Tel: 01823 667608Bristol, Park Street Tel: 0117 3292114

Bristol, Southville Tel: 01173 290271

Specialist shopsLittle Steps, Truro Tel: 01872 858072Plymouth Home Tel: 01752 657370