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NEWSLETTER SPRING/SUMMER 2022

KEEPING CHILDREN AT THE HEART OF OUR CARE

WELCOME TO OUR SPRING NEWSLETTER INSIDE THIS ISSUE: 3 Challenge events are back 4 Children at the heart of our care 6 Our cover star Ted 8 A bear hug for Isabella 9 Ten minutes, ten questions 12 Bright, brilliant and awesome teens 14 Become a Julia’s House Young Fundraiser 15 Explore our hospice gardens 16 Meet the children

OUR POSTAGE IS FREE! If you have received this newsletter by post, you’ll be pleased to know it hasn’t cost us a penny to send. Barclays generously cover the postage costs for all our mail.

We have just been through a winter where COVID-related staff absence in the UK put unprecedented strain on services in all sectors. Our service was affected too, but this period also highlighted a vitally important role: the Named Nurse. Each family in the care of Julia’s House has a Named Nurse as their main contact, someone who knows their child very well and who keeps in frequent touch to offer support. This means the family don’t have to explain their child’s condition all over again when someone picks up the phone, as happens elsewhere. It reduces the isolation that parents have felt during the pandemic. And the Named Nurse becomes the first person they turn to when times are toughest. As one mum put it: ‘What on earth did we do before we had Julia’s House in our lives? Laura [our Named Nurse] has been nothing short of a human rock this year, supporting us through the worst year of our lives.’ The bond between the families and our nurses, and the way the children’s faces light up when they see their Julia’s House nurses or carers, were two of many reasons why the Care Quality Commission (CQC) awarded us its top rating of Outstanding in its recent inspection. To achieve this amidst a pandemic is something everyone should feel proud of – our staff and volunteers, for their continuing dedication; and you, our supporters. Without you, none of this could happen. So thank you for being outstanding. You are our ‘human rock’. You fund these healthcare heroes, who go about their daily work with compassion, strength and grace.

Martin Edwards Chief Executive, Julia’s House

STAY IN TOUCH... Call us 01202 644220 Email us info@juliashouse.org Visit us www.juliashouse.org Follow us Dorset address

Registered Charity No. 1067125

Julia’s House, Barclays House, 1 Wimborne Road, Poole, Dorset BH15 2BB Wiltshire address Julia’s House, Browfort, Bath Road, Devizes SN10 2AT

CHALLENGE EVENTS

CHALLENGE EVENTS ARE BACK!

Get active with our 2022 fundraising events

The last couple of years have been challenging for everyone, but we’re giving you the opportunity to experience a different kind of challenge in our first full programme of fundraising events since 2019. Signing up to one of the Julia’s House challenges is a great way to step positively into 2022 and help support local families across Dorset and Wiltshire. “Like many charities, we were forced to cancel so many of our events over the last two years. This has had a significant impact on our fundraising income but has also been disappointing for lots of people who we know love to come out and support Julia’s House in this way,” explains Hannah Miller, our Events Manager. JURASSIC COAST TREK 26 JUNE Take on our epic trek along the Dorset coastline, mastering cliff top climbs and enjoying breath-taking views. Celebrate your achievement with a prosecco and hog roast at our finish line in the magnificent grounds of Harry Warren House over-looking Old Harry Rocks.

GREAT WILTSHIRE WALK 17 JULY Our popular hike through the beautiful Wiltshire landscape is bigger and better than ever, taking in spectacular scenery and landmarks such as Avebury’s World Heritage Stone Circle. A glass of fizz will be waiting for you at the finish, the Kings Arms, All Cannings. Both our Dorset and Wiltshire hikes are completed in one day and have 26 and 13 mile routes. THE BIG JUMP 23 APRIL The Julia’s House skydive takes place again at the Army Parachute Association near Salisbury. Places are limited so sign up quickly for a tandem skydive taking in once-in-a-lifetime aerial views on the way down. It’s an experience you’ll never forget! RUN BOURNEMOUTH 8–9 OCTOBER Sign up for a free charity place as you run and fundraise for Julia’s House! Choose from the half-marathon, 10k or 5k. There are also junior races for children aged from three to 12, so your family can run for the Julia’s House families.

TAILOR-MADE TREKS If you’re a local business looking for an inspiring team building day or just want to organise a get together with friends to celebrate a special occasion, we now offer specially trained guides who can organise a private guided hike in Dorset or Wiltshire just for you. Just choose when and where you’d like to go, how far and how challenging! WE’LL BE THERE FOR YOU Sign up for any of our challenges and you’ll receive one-to-one support from our events team, a free running vest or t-shirt, medal and access to our Fundraisers Facebook Group. COVID-19 We’re confident that our events will be able to go ahead and will be ensuring everyone’s safety by taking all the necessary Government precautions on the day. If events do have to be cancelled, we will offer everyone the option to withdraw or postpone until 2023. You can find out more and sign up for any of our fundraising challenge events at juliashouse.org/events 3

SPRING/SUMMER 2022

CHILDREN AT THE HE RT OF OUR CARE Julia’s House doctors, Dr Martin Hussey and Dr Jo Frost, share why the increasingly complex needs of the children we support require more medical care and a team approach “Julia Perks and I worked together at Poole Hospital and I remember her talking all about setting up the children’s hospice service, so I feel I have been part of Julia’s House from the very start,” says Martin, who joined the hospice in 2020. Jo has worked locally in paediatrics since 2015 and also at a children’s hospice in the past: “I know just what an important role children’s hospices play in the community as part of the wide team of support around seriously ill children and their families.”

seem to take priority. We aim to take some of that medical burden away from families, so they can enjoy their time together.” Martin adds: “We work hard to keep the child at the centre of our care, in increasingly complex circumstances. As the medical team in many ways we are not the most important people here, everyone else is. It’s the whole team that provide care for the whole child, not just meeting their medical needs, but their physical, emotional, psychological and developmental needs too.”

RESPONDING TO GROWING NEEDS

MORE CHOICE

“The children we support have become increasingly complex from a medical point of view; this is reflected nationally too, so we have to respond to these changing and growing needs,” continues Jo. “It is challenging for everyone and especially for parents, who have to be so focused on providing care, that sometimes the medical interventions and equipment

Increasing Jo and Martin’s time at the hospice will also enable Julia’s House to offer families more choice at the end of their child’s life: “Families will be looked after wherever they may be for end of life – in a hospital, at a hospice or at home, but for us it will mean being able to provide more choice if they would like to be at the hospice. We can now make this a possibility

CARE UPDATE

“WE WORK HARD TO KEEP THE CHILD AT THE CENTRE OF OUR CARE, IN INCREASINGLY COMPLEX CIRCUMSTANCES. AS THE MEDICAL TEAM IN MANY WAYS WE ARE NOT THE MOST IMPORTANT PEOPLE HERE, EVERYONE ELSE IS.” Dr Martin Hussey

Dr Jo Frost and Dr Martin Hussey

for more families and be able to care for more children.” Jo emphasises it’s about a choice and not an ‘instead of’ for families: “It’s very much about having that wider team philosophy and working closely with community care. Home is often the first choice and sometimes parents prefer to be in the hospital, but if they want to come to the hospice, we can provide that. “And the hospice can provide that care for the whole family – cooking meals for everyone, the family can stay over, visitors can be planned. We can take away the other burdens of life, so that they can concentrate on their child, concentrate on just being parents. We’re not a hospital in a hospice nor are we home, but we are able to offer elements of each as our focus is holistic care.” Martin and Jo emphasise the importance of teamwork: “It really is a whole team approach, and we aspire to link NHS and other services and the hospice to make that positive difference to a child and their family.” They both take their inspiration from the children and families: “The children and families face considerable challenges but despite everything they can still find time to smile and have fun. I hope that with the support of Julia’s House they can find more time for the fun family activities”, said Martin. “They often support and help others, alongside their own challenges, and that is inspiring and puts our own problems into perspective.” 5

SPRING/SUMMER 2022

TED’S SMILE

“Ted’s our little hero – he’s so special,” says mum Zoe. “On the darkest of days, when you’re sat in intensive care with him, he’ll look at you as if to say, ‘I’m okay, Mum. We can do this.’ He’s got an inner strength which has taught Sven and me so much.” 6

TED’S STORY

ONE IN 150 Twelve-year-old Ted was born with a rare and terminal condition called Aromatic Amino Acid Decarboxylase Deficiency (AADCd). He’s one of only five children in the UK to have it and there’s only around 150 children with the condition worldwide. “Ted’s neuro transmitters don’t work in the same way as ours, so from birth he Ted with mum Zoe, dad Sven and sister Emilia wasn’t able to produce dopamine or serotonin, which are vital for join in the fun too – for example everyday living,” says Zoe. “For the making pancakes on Pancake Day. first 10 years of his life, he’d have fits It’s nice because with those extra that could last up to 10 hours a day. pairs of hands you can do something “He’s also got scoliosis, which memorable together like that. has caused his spine to curve so severely over time that eventually his lungs would be crushed. His ribs SOMEWHERE TO BELONG were rubbing on his pelvis, so he’s “I think everyone’s mental health has already had his hip joint replaced. been hit hard during the pandemic, He asks to put his cast on every day but pressures build up over years now because he knows he slumps when you have a disabled child. Sven without it. We talk to Ted about and I both work as well as caring for everything and unfortunately in Ted and our two other children, and some ways he does understand it all. we can be incredibly exhausted from week to week. I don’t know how NOTHING LIKE A HOSPICE we would have survived lockdown “My mum died in a hospice due to without Julia’s House coming in. And cancer, so when a hospice was first it made such a difference for Ted’s suggested to us for Ted, we thought mental health to have that social the worst and found that really hard interaction from the carers. When as a family,” says Zoe. “But we couldn’t the pandemic hit, most of our other have been more wrong – Julia’s care seemed to stop overnight, but House has had such a positive impact Julia’s House has been there with us on all of us, and especially Ted. throughout it all. “It’s exhausting caring 24/7 for a “Without Julia’s House it would just child who is acutely disabled. So go back to how it was before – Sven when the nurses and carers from and I wouldn’t have date nights, or Julia’s House come in and take over this respite. We wouldn’t have that for a few hours, it literally lightens quality time with each other and everybody’s day up. It means I can Ted’s siblings. Also Ted wouldn’t have go for a walk with my six-year-old that independence either. He doesn’t or bowling with my 18-year-old, get invited to parties or go to other and I don’t have to worry about Ted people’s houses like his siblings do. because I know he’s happy and safe. When he goes to the hospice, it’s like “And when the carers come into his own special place. That’s huge for our home for community sits, Ted’s a 12-year-old boy – to feel like you little sister Emmie will sometimes have somewhere to belong.” 7

SPRING/SUMMER 2022

A BEAR HUG FOR ISABELLA Your We Care Bears showed how much you care We have been blown away by your response to our Christmas Appeal. A staggering £60,000 was generously given in support of Isabella’s story and our four-year-old Appeal star has been thrilled to see so many of her ‘We Care Bear’ cards returned in the post too. The We Care Bears looked magical hung up at the hospice – each with such kind, personal messages. It felt as if every family, nurse and carer at Julia’s House had received a Bear hug from all of you. You’ll remember that Isabella is extremely vulnerable as she has chronic lung disease and needs to be attached to an oxygen cylinder day and night. Her care is very complex which makes leaving the house extremely difficult but thanks to you, our nurses and carers were able to visit Isabella and many other children in their homes to give families the support they needed over Christmas. With your help we even made it possible for Isabella and Erica to visit Santa’s Grotto together for the very first time! Together we can continue to make wishes come true and make a real difference to families just like Isabella’s.

THANK YOU!

EXPLORE OUR NEW POOLE SHOP In December we opened the doors of our brand new Poole shop, which now has a more central location on the High Street.

Julia’s House Young Ambassador Ebony Robinson was on hand to cut the ribbon, and, despite the pouring rain there was a queue of people waiting outside to come in and snap up bargains! Julia’s House now has ten shops in Dorset and three in Wiltshire. During the lockdown closures of 2021 we saw a loss of £150,000 per month, so it’s great to hear that our shops are thriving. “Retail sales are vital to us, and provide around 40% of our total income,” explains our CEO Martin Edwards. “Fortunately, since the last lockdown we have seen strong retail growth and have plans to open further stores over the next few years. It is thanks to our team of amazing volunteers that our shops are thriving. We couldn’t do it without them.” If you haven’t yet had a chance to visit the new Poole shop, our volunteers are ready and waiting to give you a warm welcome next time you’re in town.

EBONY INTERVIEW

TEN MINUTES, TEN QUESTIONS Meet Julia’s House Young Ambassador, Ebony Robinson HOW WOULD YOU DESCRIBE YOUR ROLE AS A JULIA’S HOUSE YOUNG AMBASSADOR? It’s a really important role as it gives people a chance to hear how Julia’s House looks after young people and the kind of care they provide. I can share how they’ve been like my family and I want to help others understand just what that’s like. WHY DID YOU WANT TO TAKE ON THE ROLE? I didn’t want to say goodbye to Julia’s House when I moved to the adult hospice, so this was a way of staying in touch and helping to fundraise. WHAT’S THE BEST THING ABOUT THE ROLE? I just like getting involved – opening the charity shops and helping to raise money. WHAT HAS BEEN YOUR MOST MEMORABLE MOMENT AS A YOUNG AMBASSADOR? Meeting everyone at the Bournemouth Air Show and seeing the Red Arrows. Oh, and meeting Martin Clunes and visiting his farm! HAS BEING A YOUNG AMBASSADOR HELPED YOU? I didn’t have much confidence when I was younger, so it’s really helped to build up my self-confidence and selfesteem. And I’ve made loads of friends. DO YOU HAVE ANYTHING YOU’D REALLY LIKE TO DO OR ACHIEVE AS A YOUNG AMBASSADOR? I would love to help spread the word on how important hospice care is.

Not only for children but for adults as well.

also share any problems with, so I wasn’t bottling things up inside.

WHAT WOULD YOU SAY TO ANYONE WHO WOULD LIKE TO BECOME A YOUNG AMBASSADOR? I would say just do it. Keep your head up and follow your dreams. You can do it if you really want to.

WHAT HAS BEEN YOUR BIGGEST CHALLENGE DURING COVID? Staying in. It was really hard to watch my brothers and friends go out. I couldn’t go to the adult hospice and really missed that. I got quite depressed.

WHY HAS JULIA’S HOUSE BEEN IMPORTANT FOR YOU? It’s been my home away from home. It gave me a break from my family and my family a break from caring for me. I had more people to talk to and

WHAT ARE YOU LOOKING FORWARD TO IN 2022? Going to the hospice again, seeing my friends, taking a holiday and getting back to some sort of normality. 9

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Julia’s House promotes responsible gambling. Players must be 16 or over and a Great Britain resident. For lottery terms and conditions go to: juliashouse.org/lottery. In 2021, 61% of lottery proceeds- £396,566 – went back to the charity to provide vital care, 13% was spent on prize money and 26% on expenses such as administration and marketing the lottery. You have a 1 in 494 chance of winning one of our weekly prizes (correct as of 26/01/2022).

SPRING/SUMMER 2022

BRIGHT, BRILLIANT AND AWESOME Julia’s House cares for many young people, helping them connect with friends, pursue studies and just be teenagers. Meet the brilliant and awesome sixteen-year-olds, Ruby and Sally.

SALLY AND RUBY’S STORIES Ruby has been supported by Julia’s House for seven years, after we started caring for her younger sister, Elisa, who has cerebral palsy. “The first thing I ever did was a water sports trip to Rockley. I was very nervous but I made some great friends who could understand what it’s like to have a sibling who’s disabled,” remembers Ruby. “We still message and game on Play Station. “Having Julia’s House there has made me feel less alone. You can feel that no-one else can relate to you but they helped me understand that isn’t the case. Things that aren’t normal for others just became normal for me – I never minded if plans were cancelled if Elisa had to go into hospital, that was just my life. “COVID was hard as I was anxious about keeping Elisa safe. I was always testing and didn’t see my family very much, especially when Elisa was in hospital. I was really scared for them.”

RUBY

“My needs are greater than a normal teenager, and a lot of the stuff that you would do for yourself, I can’t do. I am high maintenance!” says Sally who has had Spinal Muscular Atrophy Type 2 since birth. “It can be painful and I do get very tired, but surgeries often help. I

SALLY

Ruby with sibling worker, Maria

“I DIDN’T ALWAYS FIND IT EASY TO TALK TO PEOPLE, BUT I LOVE IT NOW AND HAVE A GREAT TIME AT COLLEGE. JULIA’S HOUSE HAS GIVEN ME THE CONFIDENCE TO MAKE THESE DECISIONS”

Ruby has been inspired by Elisa’s Ruby meets sibling worker, Maria, care and plans to go into nursing – regularly: “It’s been really nice now I’m she’s studying health and social care more grown up. Maria and I have had at college after doing well in her time to get to know each other, going GCSE’s during the pandemic. for walks or chatting over coffee – I’ve “I didn’t always find it easy to talk to found a great café with amazing brownies! It just feels natural now when people, but I love it now and have a great time at college. Julia’s House she messages to arrange to meet. I always worry about Elisa, it’s constantly has given me the confidence to make these decisions. They have in the back of my mind but knowing I changed my life.” can talk with Maria really helps.”

have to have regular surgeries as my condition degenerates. I broke my leg last year and I didn’t even realise. I was in a lot of pain but put off the surgery so I could sit my GCSEs and have my last day at school. Looking back I’m not sure how I did it! “I am studying A Levels at college and would love to study Music at university. I like to plan everything but there’s the conversation you’ll have with yourself about life expectancy; with my condition it can vary from living until you’re 20 to almost living a full life. I usually just think, ‘I’m going to die at some point, so we’ll find out when it happens.’ I can’t regret having a disability because this is just the life I’ve been given.

“My Julia’s House carers usually come on a weekend or in school holidays. Before COVID, we’d go to the cinema or go for lunch and just hang out like a normal teenager would. It’s like they’re what my body isn’t. They can be my hands when I can’t cut food, help me pass money over the counter, brush my hair – simple things like that. “If Julia’s House didn’t exist my life would be very different. Our family wouldn’t get those breaks everyone needs. “Sometimes I do feel sorry for myself but overall I just get on with it. Mum’s given me that attitude because you’ve got to live every moment as it comes.”

“IF JULIA’S HOUSE DIDN’T EXIST MY LIFE WOULD BE VERY DIFFERENT. OUR FAMILY WOULDN’T GET THOSE BREAKS EVERYONE NEEDS” 13

SPRING/SUMMER 2022

YOUNG FUNDRAISER, ELLIE EVANS Twelve-year-old Ellie Evans completed a climbathon to fundraise for Julia’s House after reading about our Together We Care appeal in her local Wiltshire newspaper. “We saw that Julia’s House needed more funding and wanted to do what we could to support them and the local children and families they care for,” says Ellie’s mum, Emma. “Ellie likes a challenge, and she always wants to help other people, too.” Ellie completed an hour long climb at Corsham Climbing Wall, raising more than £1,500 – an incredible achievement!

THE FUTURE OF FUNDRAISING Become a Julia’s House Young Fundraiser Over the last year you may have noticed some amazing stories in the press and on our website of young people who have achieved extraordinary things whilst fundraising for Julia’s House. Children like eight-year-old Luka Bayes who completed a marathon by running a mile a day to raise more than £1800 and nine-year-old Nicole-Ginevra who took part in a 60-mile virtual walk to the Great Wall of China in our Seven Wonders of the World lockdown challenge. The support of young fundraisers makes such a difference to us, so this month we’re launching Julia’s House Young Fundraisers, a scheme which celebrates the achievements of inspiring young people as they help 14

us to help the families of seriously ill children across Dorset and Wiltshire. Anyone aged 16 and under who fundraises for Julia’s House will automatically enter the scheme. Complete your first fundraising event to receive your Level 1 certificate and badge, then progress through the levels. And if you’ve already raised money for us you won’t be left behind – we’ll start you at Level 2 and send you your Level 1 award right away! “It’s always incredibly heartwarming when we hear about young people who want to make a difference to the families we care for in their local community,” says Nicky Clack, Fundraising Assistant for Julia’s House. “We receive very little

government funding and provide our care service to families for free, so the support from people of all ages is absolutely vital. But knowing that there are young people who want to support us is especially important and gives us confidence for the future. We want to acknowledge the great contribution they make to Julia’s House and provide them with a really positive experience of fundraising. We hope they will continue to fundraise for us and want to encourage them to take their spirit of giving with them as they grow older!” Learn about becoming a Julia’s House Young Fundraiser at juliashouse.org/youngfundraisers

OPEN GARDENS

VISIT OUR HOSPICE GARDENS

This spring we are excited to be opening up the gardens of our Corfe Mullen and Devizes hospices to visitors as part of the National Garden Scheme

You’ll be able to visit both hospices on 7th and 8th May between 10.30am and 3.30pm. It’s a rare opportunity to see behind the scenes at Julia’s House and enjoy the beautiful gardens which are maintained by our wonderful team of volunteers across Dorset and Wiltshire. We’ll have tea, coffee and cake available throughout the day for a small donation, as well as a plant sale.

Entry costs £4 per person (children free) and must be booked through the National Garden Scheme website www.ngs.org.uk Due to COVID restrictions we are currently limited to just 40 people per day, although if restrictions change we will welcome visitors on the day and offer guided tours. Please book early or check with us before visiting to avoid disappointment. Email community@juliashouse.org

Due to the nature of our care at the hospice, it may be necessary to cancel the open gardens event at short notice. Please check before you attend at juliashouse.org

MEET THE CHILDREN been overjoyed to open A busy day We’ve up our hospices, welcoming children and families again. Addy kicked off her hospice session with an indoor snowball fight! Addy, who has Batten’s disease, was feeling tired when she arrived. But after Nurse Mandi helped her tolerate two feeds, Addy enjoyed sensory play with Playmaker Lisa and a foot massage with Complementary Therapist Emma. The five-year-old also baked gingerbread men, played in the den and drove our toy Tesla. Meanwhile, Mum and Dad were able to take a welldeserved rest and spend time with Addy’s brother, Samuel.

Best friends

Sophie and Ava became great friends making slime and playing pranks together when they were at the hospice. They were looking forward to getting together again, but unfortunately Sophie wasn’t able to come out to play as she’d come down with a cold. So, the care team packed up a bag of all the activities they were going to do together and dropped it around to poorly Sophie, so she could join in with Ava on Zoom. The girls made gingerbread houses, chocolate truffles and slime and were just so happy to be able to get together virtually.

never a dull moment with On the go There’s fourteen-year-old Ella, who has Sanfilippo syndrome which means her brain and nervous system are gradually deteriorating. Whether it’s baking, crafting or going out for walks, Ella loves joining in and will occasionally give nurse Celia direct eye contact and a lovely smile. “It’s great for Ella to socialise and have some sensory time,” says Ella’s mum, Sally. “It gives me a chance for a break too, walking the dog or spending time with friends. Julia’s House is like our family and I don’t know how we would have managed without them during the pandemic.”

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