CHAS Chat Spring Summer 2015

Inside this issue...

Making Moments CountPage 4

Diana Children’s NursesPage 10

Home SupportPage 6

Robin House providing ten years of care

A Place to Remember

Spring/Summer 2015

Welcome...Welcome to another edition of CHAS Chat – there’s so much to tell you about!The big story of course is that Robin House celebrates its tenth birthday this year – a real milestone for all at CHAS and I want to say thank you to all the staff, volunteers and supporters who make it the warm, life-affirming place it is.

Other highlights inside include the incredible Home Support volunteers who are working closely with families to provide the very practical support they need in their homes.

We have news too of our new Transition Team and how they are helping young people to plan their future care and support to fulfil their own personal needs and aspirations. We also tell you about the Diana Children’s Nurses and how they are helping to transform palliative care in Scotland, so that families have choices about how and where they want their child to be cared for in life and death.

The McDowall’s story is a poignant reminder about the importance of the last days families have together and making special memories.

We will always have babies, children, young people and their families at the heart of our work and we are making a real difference across Scotland.

Of course none of this can happen without your support and thank you to everyone who has helped CHAS.

We need your help today just as much as we needed it ten years ago and inside you’ll find ideas on ways you can help us. n

Maria McGill Chief Executive

Children’s Hospice Week 2015 runs from Monday 11 to Sunday 17 May to raise awareness of children’s hospice services with the theme ‘Making Every Moment Count’.

Look out for more information on the CHAS website and we’ll be encouraging people to share the moments that matter to them on social media using #momentscount

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Children’s Hospice Association Scotland (CHAS) is the only charity that provides hospice services in Scotland for babies, children and young people with life-shortening conditions.CHAS runs two children’s hospices, Rachel House and Robin House, and a home care service, CHAS at Home.

About CHAS

www.chas.org.ukwww.chas.org.uk2

Donate Your Unwanted Items Donating your unwanted items is an easy way to help CHAS. Profits from jewellery, clothing, accessories, shoes, handbags, bric-a-brac, household items or kitchenware donated and sold in our shops will go towards running Scotland’s only children’s hospice services. You can hand them in to any CHAS shop or office.

Top Fashion TipsCHAS Charity Shop Manager, Rebecca Addison, shares her top fashion tips to look and feel good this spring/summer. Our CHAS shops have what you need to get the look at fantastic prices.

Heavy Metallics Stay on-trend by teaming your oversized metallic accessories with delicate lace. This season is all about unexpected combinations, so have fun finding new accessories to bring a new look to your existing wardrobe favourites.

Fabulous Florals Once again, loud prints are set to reign this summer. Brave souls should capture the trend by wearing as many clashing styles as possible. Wallflowers should be brave and try at least one!

Bling Up BasicsThe trend for layering up jewellery looks set to continue and there’s no better place to find a real assortment of treasure than at your favourite CHAS shop. A great way to style a plain black vest is to match with a loudly-printed skirt or culottes for extra fashion points.

Happening Haberdashery Mirror the huge catwalk trend for oversized details and top stitching by snapping up buttons, beads and trimmings, and customising your older items in your wardrobe in this homespun style. Real clever-clogs could even pick up a pattern and make theirs from scratch. n

To find your nearest CHAS shop in Kinross, Dunfermline, Stirling or Glasgow, visit bit.ly/CHASshops or call your nearest CHAS office.

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Urgent Appeal for DriversWe urgently need your help to get donated items into our shops. If you are a driver and can pick up and deliver stock around our shops in Kinross, Dunfermline, Stirling and Glasgow, we’d love to hear from you. To make a difference, contact Will McLean on 01577 865005 or email [email protected]

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Spring/Summer 2015

It’s impossible to imagine the devastation a family faces when their child is diagnosed with a life-shortening condition. Leanne McDowall was 20 weeks pregnant when her and Mark found out their unborn daughter was diagnosed with Edwards’ Syndrome, but they were determined to give her the best care they could.

Dad Mark explains: “We decided to go ahead with the pregnancy. We were facing anything from miscarriage to a stillbirth, or up to a year with our baby. She deserved a chance to try.

“Julianne was born on the Thursday morning, weighing just over 3lb. It was much worse than we thought. There were other complications – her oesophagus was missing so she couldn’t eat and she had a hole between her stomach and lungs, so the stomach acid was eating away her lungs.

“Julianne was in an incubator and needed full oxygen. She had a scary amount of lines in

her body to give her medicine and hook her up to machines that made terrifying beeping and whistling noises.

“We were clinging to the hope of an operation to repair her stomach and lungs, but it wasn’t possible. Suddenly, we didn’t have much time and Robin House seemed the best place.

“At hospital, Julianne didn’t feel like our daughter. We couldn’t hold her for long or dress her. Only one family member could see her at any one time. We felt like we were just visiting.”

Making Moments Count


A Home from Home“Within the first hour of being at Robin House we knew we’d made the right choice. We bathed her, changed her nappy and dressed her in her own clothes and blankets. We gave her a proper good cuddle – just the three of us sitting on the couch, with no noises or wires stuck all over her little body, just one tube in her nose. Julianne felt like ours for the first time. It was amazing. It was like being home.

“On the Monday we had a rough night, I’d been up all night singing songs to her. But the next morning she was better. I ran to the shops to pay some bills and half an hour after getting back, she took her last breath. She was five days old. I was wandering around in a daze. I didn’t know what to do.”

Saying Goodbye“The support from staff was amazing. They sorted out the birth and death certificate, and helped organise the funeral. Our extended family were able to visit and say their goodbyes. Staff were there for us the whole time. Without them we couldn’t have got through it. There’s nothing I can ever do to thank them enough.

“We have hundreds of photos and keepsakes the staff made for us to remember Julianne, like hand and foot prints, and we’ve got the music from the funeral service on CD. It’s amazing to have those memories.

“The team at Robin House phone regularly and we’ve been to the Remembering Days. It’s a blessing to know that if we ever need CHAS, someone will help us.

“We’re expecting another girl and we’ve been given the all clear. We’ll call her Robyn – it wasn’t a deliberate choice, but it’s very fitting! We’ll tell Robyn all about her sister and thanks to Robin House we’ve got our memories, so Julianne will be with us forever.” n

You can help families like the McDowall’s £10 a month could pay for a day’s supply of oxygen for a baby like Julianne.

Go to Page 13

“ Just the three of us sitting on the couch, with no noises or wires stuck all over her little body, just one tube in her nose. Julianne felt like ours for the first time. It was amazing. It was like being home.” n

Edwards’ SyndromeEdwards’ Syndrome is a rare condition caused by an abnormal amount of chromosome cells in the body. Babies with Edwards’ Syndrome don’t grow as well as they should in the womb and have a low birth weight which causes serious medical problems. This includes heart and kidney problems, feeding and breathing problems, and severe learning difficulties. Sadly, most babies, like Julianne, only survive a few days, weeks or months.

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Spring/Summer 2015

Siblings Day OutMum Colette Devlin was concerned that her daughters Jennifer, 14, and Jessica, 9, were missing out on their childhood and approached the project.

Colette says: “One of my other daughters, Rebecca, needs care 24 hours a day. I can’t leave her alone for a moment. I don’t have time to take the girls out so they miss out on lots. Going out with Karen gives them something to

look forward to and they have lots of fun. It also gives me time to focus on Rebecca.”

Volunteer Karen Hay, 21, says: “Jennifer and Jessica choose what they want to do once a month. The first time we went ice skating – it was brilliant fun! It’s a good feeling to know you’re helping someone. As a society, we aren’t always good at recognising that people living with someone who has an illness or disability needs support too.” n

The physical and emotional demands of caring for a child with a life-shortening condition are exhausting. The Home Support project with Community Service Volunteers (CSV) is providing practical support to families across the central belt.

Could you be a Home Support Volunteer?Popular requests from families are help with laundry, housework, shopping, dog walking, gardening, and helping siblings with activities or taking them on outings. We ask that you can commit to a minimum of six months. Contact Sam Jelf, CSV Volunteer Manager, on 07475 414713 or email [email protected]

A Helping HandCally and Paul Fraser are busy parents to three boys and approached the project for help with housework and support with siblings Rory, 11, and Findlay, 9.

Mum Cally says: “It’s great not to have to think about the housework when you have hundreds of things to do, but the best thing is that Kate is part of the family. Findlay loves doing arts and crafts with her and I get more time with Hamish who needs constant care and attention. Also, Kate helps with dropping the boys off at their drama and ski-ing clubs after school, so they don’t miss out if we need to be at home with Hamish.”

Volunteer Kate Clark, says: “After I retired, I needed a new direction and wanted to help others. I visit once a week and help with whatever housework that needs to be done. I always make the living room nice for the family to chill out in when they come home from work or school. I love going to help.” n

Home Support

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Why do young people need support?Claire: “Some young people with life-shortening conditions are living into their 30s and need respite support and care, but a children’s hospice isn’t appropriate. We’re working together with adult hospices that have traditionally focused on end of life care for older people. Young people have a right to live the life they want.”

What opportunities are available for young people?Jen: “We can work with health and social work services to find alternative respite breaks for them, but it’s much bigger than that. It’s very easy for young people to become isolated if there are no social or educational opportunities.”

Claire: “They’re no different from other young adults. They want to go out and have fun, maybe get their own place or perhaps do a college course, and why shouldn’t they? But it’s a lot harder for them depending on their physical and emotional needs. It’s our job to help young people find these opportunities.”

How will you help to give them the life they want?Claire: “We’ll ask the young person what they want in life and help them in developing an individual plan that supports and empowers them to achieve their own personal goals. We’ll give them the tools and confidence to build relationships with others

to fulfil these wishes. Also, we can be the young person’s advocates and use our knowledge and skills to work alongside local services.”

Janette: “For example, I supported a young man to access a course at college. The college had never supported a student with his condition before and I acted as intermediary so they had the skills to do this.”

What are you looking forward to the most as a team?Emma: “Growing as a team and seeing the positive outcomes of young adults transitioning from CHAS.”

Janette: “We all have different backgrounds – palliative care, occupational therapy, mental health and social work – so, using our diversity and skills as a team to help families.”

Jen: “I’m excited about being part of the new developments in palliative care.”

Claire: “I can’t wait to see a 30 year old in an adult setting enjoying breaks with peers of a similar age.” n

The new Transition Team will help young people aged 18 and over to move from CHAS services to age appropriate care. The team is passionate about supporting and empowering young people with life-shortening conditions to have the life they want.

60 Seconds with the Transition TeamPictured left to right are Janette McGarvey, Claire Turnbull, Emma Thorpe and Jen Milburn.

CHAS are extremely grateful to the Big Lottery Fund for supporting the Transition Team.

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Spring/Summer 2015

A Place to RememberYvonne Caie, Clinical Nurse Manager, remembers pulling on her wellies and wearing a hard hat to work when Robin House was just a muddy building site ten years ago. Today, as we celebrate a decade of the hospice, she is more likely to be pulling on fancy dress for one of the themed days or handling snakes during one of the ZooLab visits.

Celebrating Life Yvonne has met hundreds of families over the years, she says: “I’ve seen families worried to come through the door, but they soon find out it’s welcoming, fun, a place to remember. Every day is a celebration. We give families amazing experiences they couldn’t have otherwise – a pool party in our hydrotherapy pool, horse riding, trips to concerts and shows, cruises on Loch Lomond – you name it, we’ve done it! We’ve had so many laughs over the years.

“Robin House is not just about the families, staff and volunteers though, we have amazing supporters who have donated and helped us over the last ten years. It’s truly incredible and I can’t thank everyone enough. I’m very privileged as I see every day how the money raised by supporters transforms lives. Families arrive exhausted and sometimes scared, but they leave feeling refreshed after a rest and smiling at the memories they’ve made.”

Increasing Care Needs“It’s hard to comprehend how families coped before Rachel House and Robin House. We have to remember that before CHAS there was no children’s hospice support in Scotland.

“There have been a lot of changes in our care over the past decade. Medical advancements mean children and young people with life-shortening conditions are living longer. Of course it’s very positive, but it means their medical needs are much more complex, so we’ve had to keep up with technology and develop our skills and knowledge.

“We have children who need ventilator machines to breathe, for example. Also, we’re caring for more babies who aren’t expected to live past their first birthday and need different care round the clock.”

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You can give comfort to families by giving their child the best medical care

£18 a month could pay for one of our doctors to provide four hours of expert medical care. Go to Page 13


Providing a Lifeline“One of our strengths is that we give the child and their family the individual care they need. For example, many of our families need care in their homes, rather than, or in addition to, coming to Robin House. CHAS at Home is able to help them in their own homes when they need it most. Families can also receive end of life care at home. There’s no one size fits all at CHAS.

“Robin House is a special place, but of course there are sad times here. The hardest part is when a child dies, and sometimes we’ve known the family for a long time. I’m very proud of our bereavement work because families have somewhere to turn for help and support.

“It’s only with the help of supporters that we can keep providing a lifeline to families. We can’t change the fact that a child will die, but we can be there for a family when they need us most.” n

Leave a Lasting Legacy

Leaving a gift in your Will can help to secure the future of our hospice services so our doors remain open. CHAS is the only children’s hospice service in Scotland. One mum said: “CHAS is there for me – a lifeline to my sanity, available 24/7. Every moment we have with Ayla is a miracle…I know CHAS will be there to help, whatever happens.”

Fascinating Facts about Robin HouseWe have 79 staff, compared to 42 when it first opened

We have 140 volunteers doing 13 different roles

During the last ten years, over 200,000 meals have been served to families, staff and volunteers

On average, a full time member of the nursing team has walked 7,500 miles in 10 years

Gardeners have spent 4,000 hours cutting the grass since Robin House opened

The housekeepers have worn out 11 Henry Hoovers

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Spring/Summer 2015

Fiona Reid, Evelyn Rodger and Caroline Porter are Diana Children’s Nurses who are employed by CHAS. They are helping to improve care for babies, children and young people with palliative needs, and support their families.

Working in Partnership Fiona covers the Highlands, Grampians, Orkney, Shetland and Western Isles and explains more about her role: “My job is to improve the care that any baby, child or young person with a life-shortening condition receives, regardless of where they live or who is providing it. I’m working alongside the NHS, local authorities and the voluntary sector to share my expertise and support them to deliver this care in communities.

“By educating and empowering professionals, we can offer families choices about where and how their child can be cared for, whether it’s in hospital, at home, or in Rachel House or Robin House. I helped one family to receive medical care from the CHAS at Home team so that they could take their baby home for end of life care, rather than staying in hospital.”

Planning for Life and Death

Planning for Life and DeathEvelyn specialises in neonates – babies who are only days old and have a life-shortening condition – and is based in the neonatal unit at Simpson’s Maternity Hospital in Edinburgh. Evelyn says: “Dame Cicely Saunders is my inspiration, she said that it’s not the length of time you live for, it’s the depth of time.

“Most families aren’t able to choose where they want to be with their baby in the last moments of their child’s life, and so this happens in the middle of a busy intensive care unit. I’m determined to offer them choices wherever possible. This is vital to my role. I helped one family so their two week old daughter could die at home surrounded by everyone who loved her, and CHAS is able to offer ongoing bereavement support.

“Although I’m based in Simpson’s, I’ll share teaching and practice with other NHS hospitals in the South East. There are no guidelines on choices that should be offered to dying babies and I’m passionate that they should have rights too, so we’re developing the ‘Lothian Pathway’ to address this.”

Diana Children’s Nurses

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Holistic Approach to Palliative CareCaroline works in intensive care units and oncology (cancer), and is based in Yorkhill Children’s Hospital in Glasgow. Caroline explains: “I’m working with NHS staff to improve care and choices for families in the West.

“By taking a more holistic approach to children’s palliative care, we can look beyond the child’s medical needs and focus on the person, not the disease, so we can capture the emotional and spiritual needs of the child, and the whole family, to improve their quality of life.

“Sometimes health staff can find it difficult to have a conversation about care as death approaches but it’s the only way to ensure wishes are fulfilled and give families some sense of control - to understand what’s happening; to manage pain and other symptoms; to choose where to die - in hospital, at home or in a CHAS hospice. If we don’t talk about it, it can be a stressful experience for a family whose child is dying. You only have one chance to get it right.” n

“How people die remains in the memory of those who live on.” Dame Cicely Saunders (founder of the modern hospice movement)

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Did you know?Diana Children’s Nurses are named as a tribute to the

life and work of Diana, Princess of Wales.

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Spring/Summer 2015

Running ShoesCaroline Johnston decided to set herself a challenge to mark her 40th birthday by running four half marathons for CHAS – and amazingly she’d never run before! Caroline says: “Initially I didn’t love running, I only did it to get fit. Now I really do love it, especially the social aspect. I’m part of a running club and go running with my friend at 7am each week, it’s the only time we can get away from the kids!“I’ve been to Robin House. Thank goodness for this amazing resource to help families deal with such an unthinkable trauma. My workplace, Cameron House, do lots for CHAS and I wanted to do my bit. I’ve signed up for another three half marathons!” n

Becky’s Bucket ListRebecca Dalgleish’s determination to make the most of her time left after being diagnosed with terminal cancer is truly inspiring: “Hi, my name is Rebecca. I am 17 and have cancer. Unfortunately I’ve been told my case is terminal. Although this news isn’t the best it has encouraged me to raise money for CHAS, a charity which has done lots for me in the past. “Even though I have cancer, there is lots I still want to achieve in my life. Time left to have fun, make plans and to live. I hope to raise at least £5,000 by having coffee mornings, dances and dares (including bungee jumping and skydiving!)” So far, Rebecca has raised an incredible £18,000. Read about Rebecca’s amazing adventures to achieve her bucket list at beccadalgleish.wordpress.com n

Inspiring Supporters

A Close ShaveOne of the surprising side effects of shaving your hair off is softer hair when it grows back, as well as a great new hair-do, says gran Mary Kelly. Mary explains: “My story is simple. Robin House was there for my wee grandson Rafferty and his parents when they needed help most. The love and care was second to none and the staff were angels. I wanted the hospice to continue to give to others what they gave to us.“I didn’t want to jump out of something or be shoved off anything. I have incredibly fast growing hair so I thought I’ll shave my hair off, I’m not vain. In three days, people donated over £6,000. Everyone was so incredibly generous – or had a bad streak in them and just wanted to see me bald!” n

What inspiring things are you doing for CHAS? Tell us what fantastic things you’re doing for CHAS by sharing a photo on our CHAS facebook page – and don’t forget to tell us a little bit about it. We’ll select our favourite photo and print it in the next edition of CHAS Chat.

Seize the day, like Rebecca, and do that thing you keep putting off. Ask your friends and family to sponsor you, and raise money for CHAS at the same time.

Fancy a new hair-do? Shave your head, dye your hair, or even donate your hair to make wigs for people with hair loss. Whatever you fancy, don’t forget to ask for sponsorship for CHAS!

Will you put on your running shoes to get fit, have fun and help CHAS?

Find out about CHAS events at bit.ly/chasevents or call your nearest CHAS office.

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Help us by donating

Give a regular monthly gift to CHASPlease complete the form in black ink, tear it off and fold it in half, stick it down and post it to us. There’s no need to put it in an envelope and there’s no stamp required.

Instruction to your Bank or Building Society to pay by Direct Debit.

I would like to give: £5 n £8 n £10 n £18 n or my choice £ __________ each month

starting on 1st / 5th / 15th * of ____________________ month __________ year. *Delete as applicable.

Your contact detailsFirst name _______________________ Last name _______________________ Tel ___________________Please provide your email address in the box below if you are happy to receive further information about our work and other communications via email.

Email ____________________________________________________________ Please tick here if you do not want us to send you further information about our work and to contact you in the future by

post or telephone.

Your payment detailsName(s) of account holder(s) __________________________________________________________________

Your address __________________________________________________________________________________

________________________________________________________________________________________________

________________________________________________________________ Postcode ______________________

Bank/Building Society account number Branch sort code

To the Manager, Name of Bank/Building Society ________________________________________________

Branch address ________________________________________________________________________________

________________________________________________________________ Postcode ______________________

Signature(s) of account holder(s) ________________________________________ Date _________________

Instruction to your Bank/Building SocietyPlease pay Children’s Hospice Association Scotland Direct Debits from the account detailed in this Instruction subject to the safeguards assured by the Direct Debit Guarantee. I understand that this Instruction may remain with Children’s Hospice Association Scotland and, if so, details will be passed electronically to my Bank/Building Society.

If you are a taxpayer, please tick the box and help us to claim at least 25p in every pound that you have given to CHAS (at no cost to you).

I request the charity to treat all donations I have made for the four years prior to this year and all donations I make from the date of this declaration, until I notify you otherwise, as Gift Aid donations. Note: You must pay an amount of income tax and/or capital gains tax at least equal to the tax we reclaim on your donation.

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Since the bag levy was introduced in October 2014, Scottish retailers must now charge 5p per bag and the Scottish Government recommends the money should be donated to charitable causes. CHAS are delighted to have been chosen to benefit by some fantastic retailers in Scotland, including high street favourites Next and Primark.

If you know a retailer that would be willing to hear from us, or if you are a retailer and would like to support CHAS in this way, we’d love to hear from you. Please contact Gill Levy on 0131 444 1900 or email [email protected] n

Interesting Facts

n 750 million carrier bags are dispensed annually by Scottish supermarkets. This is the equivalent to 11.7 bags for every person per month, which amounts to £37.5 million.

n Many single use carrier bags are made from a non-renewable resource, can take between 500 and 1,000 years to decompose, and may never break down in landfill.

n In Northern Ireland, where the charge was introduced in 2013, it’s estimated there has already been an 80% reduction in carrier bags issued by supermarkets.

CHAS EventsDo something to help babies, children and young people with life-shortening conditions. Whether you like walking, cycling, running, or something more fun or extreme, we have something for everyone. See ‘Dates For Your Diary’ on the back page for exciting events you can take part in for CHAS.

Make A Will Week 18 - 24 May 2015

Do you know only 3 in 10 people in the UK have a Will?

During Make A Will Week for CHAS a solicitor can make or amend your Will, and instead of charging a fee, they will invite you to make a donation to CHAS. It’s the perfect time to make sure your wishes are carried out when you die, and help CHAS at the same time. To find your nearest participating solicitor, please call CHAS on 0131 444 1900.

Scottish Bag Levy

(Source: ‘Keep Scotland Beautiful’ website)

Spring/Summer 2015

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Contact us...CHAS Glasgowtel: 0141 779 6180 email: [email protected]

CHAS Kinrosstel: 01577 865222 email: [email protected]

CHAS Edinburghtel: 0131 444 1515 email: [email protected]

CHAS Aberdeentel: 01224 645000 email: [email protected]

CHAS Invernesstel: 01463 248479 email: [email protected]

Retail Teamtel: 01577 864692 email: [email protected]

Outdoor Events Teamtel: 0131 444 4904 email:[email protected]

Head Officetel: 0131 444 1900 email: [email protected] Court, 42 Craiglockhart Avenue, Edinburgh EH14 1LT

Like us on facebook atchildrenshospiceassociationscotland

Follow us on twitter @SupportCHAS

Watch us on YouTube at CHAScharity

Keep up to date with CHAS news: www.chas.org.uk

Scottish charity number SC 019724

Dates For Your Diary 2015If you’re looking for fun, runs and adventure, then look no further! There are lots of exciting events that are coming up. If you see something you fancy, visit the CHAS website at bit.ly/chasevents or call your nearest CHAS office to find out more.

Saturday 2 May Scottish Championship Rally, Granite City Rally, Aberdeen

Monday 11 May-Sunday 17 MayChildren’s Hospice Week

Thursday 14 MayPolaroid Helensburgh 10K

Sunday 17 MayMorrisons Great Women’s 10K

Thursday 21 MayPolaroid Dumbarton 10K

Thursday 28 MayPolaroid Clydebank 10K

Friday 29 MayGlasgow Ladies Lunch

Saturday 30-Sunday 31 May Edinburgh Marathon Festival

Sunday 31 MayCrathes Vintage Car and Motorcycle Rally, near Banchory

Sunday 7 JunePolaroid Vale of Leven 10K

Sunday 7 JuneRotary Club of South Queensferry Forth Rail Bridge Abseil

Sunday 14 JuneOrchil 10K, Activities Centre,The Gleneagles Hotel

Saturday 1 AugustScottish Championship Rally Speyside Stages, Elgin

Saturday 5 September Highland Perthshire Marathon, Half Marathon and Bike Event

Sunday 20 SeptemberIron Ride, Tayside

Thursday 24 SeptemberAberdeen Ladies Lunch

Sunday 27 September Baxters Loch Ness Marathon and Festival of Running

Sunday 4 OctoberGreat Scottish Run, Glasgow

Friday 6 NovemberEdinburgh Ladies Lunch

CHAS Chat Spring Summer 2015

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