CLAIREMAGAZINEHOUSE 2022AUTUMN Because of you we’re always here for families like Eva’s.
Whenever I think about Claire House, I get a warm feeling. My daughter Eva, who is so excited to be on the front cover, loves spending time at the hospice.
4JD 0151 343 0883 clairehouse.org.uk Registered Charity no: 1004058 Company no: 02620240
Hi everyone, I’m Jenny and these are my daughters Eva and Hannah. We’d like to welcome you to the Autumn 2022 edition of Our House magazine.
Children’s Hospice,
Love Jenny
To everyone who has contributed to this edition of Our House. In particular, the Claire House families featured and the photographers and volunteers who gave up their time and lent us their skills.
I hope you enjoy reading this issue of Our House.
Thank you
Contributors: Hannah Shannon, Mark Hobley, Mark Pearson C.I.C, Claire House Clatterbridge Road, Bebington, CH63
Photography: Jump-Imaging
Fotopia Design: coppermedia.co.uk
In this edition you will read about how the Claire House team have been there for me when I haven’t known where else to turn, and how the hospice is always a place of fun, love, laughter and care for Eva. Eva has complex medical needs and I don’t have many people I can turn to when things are tough, but it is thanks to your support that I know Claire House will always be here for us.
WELCOME TO OUR HOUSE
Editor: Jessica jessica.arnell@clairehouse.org.ukArnell
CONTENTS OUR NEWSHOUSE Catch up with the latest news from your local children’s hospice. CLAIRE HOUSE WAS OUR SANCTUARY Learn how Claire sonPaulAngela,toandlove,sanctuarybecameHouseaofkindnesssupportmumdadandtheirJude. PRINCE LEO Read about how hospicefromtreatmentthereceivesmeanssupportyourLeoroyaltheteam. DECADES DEVOTIONOF Meet some of our loving, dedicated and enthusiastic staff members who have been here for Claire House for over a decade. SOMETHING INSIDE SO STRONG Hear how singing is helping to lift spirits, build bonds and release emotions for the mums and nans that the hospice supports. 10144 16 20 EASY SUNDAYLIKEMORNING Hear from mum Jenny, who explains why daughterher Eva loves coming to howHouse,Claireandherfun-loving attitude rubs off on those around her. 6
CLARE
I’m a Palliative Care Nurse Specialist and I’ve been at Claire House for 23 years. My work involves looking after children and their families when the child is at the end of their life. This involves ensuring the child and family have a choice of whether their care is provided at the hospice or at home, managing the child’s symptoms and providing emotional support for the whole family . We only have one chance to get the end of a child’s life right. We help parents make memories outside of a medical setting. This could be simply taking a walk in the garden or giving their child a bath. Being able to help parents make good memories with their child in the precious little time before they pass is what makes me love the work I do.
4 decades devotionof
Meet some of our loving, dedicated and enthusiastic staff members who have been here for Claire House children and families for over decade.
HEATHER
ELAINE
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NEIL
I’ve been working at Claire House for over 10 years. I started off as a volunteer in the Chester charity shop and after a few months had the opportunity to be taken on as staff. Since then, I’ve moved through a few roles and I now manage the shop.
I started at Claire House 24 years ago in the House Keeping team. The team and our lovely volunteers do a whole range of different things around the hospice, all with the aim of making sure the hospice is a safe and clean environment for the children who come here. On occasion, I’ve been recognised outside of work by parents who once came to the hospice. They love chatting about how things are with me and at Claire House. Things like that really make me realise how big a part I’ve played in supporting people at a really difficult time of their lives.
Working in a charity shop is great and very different to other kinds of shops; we have a great community feeling. There are loads of brilliant customers who come in, sometimes just for a chat. I love to see the shop’s contribution to the charity. It is a really good feeling, knowing the work I do helps to support seriously ill children.
I’ve been working at Claire House for 15 years. I work as a Health Care Support Worker but it never really feels like a job. It’s an honour to come in and be here for the children and families that need me. People hear the word hospice and think it’s all doom and gloom here, but most of the time it’s a really fun and happy place to be. No day is ever the same; one day I could be covered in glue and glitter, and another I could be soaked through from the kids splashing in the pool.
6 Eva and
easy morningsundaylike
Eva’s mum Jenny explains why her daughter loves coming to Claire House, and how her fun-loving attitude rubs off on those around her. Angharad from the hospice team
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KellieEvabaking with Kellie
“Eva started coming for short breaks and we’d stay as a family; me, her nan and her twin sister, Hannah. Then the pandemic came and she had to come alone. Now she always goes on her own and really looks forward to it.”
Eva also has her own way of winning people over. “She’s a very giving person. If she likes you, or if it’s an introduction, she makes a card. She loves doing it.”
“You could spend years crying, moaning and wishing it was different, but it’s not going to change anything is it? So, you make the best of what you’ve got. I think that Eva has that notion as well.
Angharad from our hospice team agrees; “I was the first person Eva met at Claire House four years ago. She made me a card and I still treasure it.”
“When Eva is coming for respite at Claire House, everyone knows about it; she tells her friends, everyone on the street - anyone who will listen. She is so proud to be going and she loves it,” says her mum.
“She’s really relaxed and chilled, easy like Sunday morning. She has lots of friends and always wants to have people over. She’d have a party every day if she could.”
Eva singing with Nurse Abi and Play & Activities Coordinator
Eva, who is 13, contracted meningitis when she was a few weeks old and had to be put into an induced coma. Although she recovered, she now has developmental delays, neurological issues, is visually impaired and uses a wheelchair. She also has Cerebral Palsy, like her twin sister. This means she needs specialist care, day and night.
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Jenny continues; “When Eva is in the hospice I get to have one to one time with Hannah. We have a meal, go to the cinema or do each other’s make up and end up looking like clowns.”
“It gives me a warm feeling - like being part of one big happy family,” said Jenny.
“She’s so happy. It’s been a godsend, I don’t like to think what it would be like without this “Peopleservice.think that hospices are places that you go to die, but for Eva it’s where she can go and meet children with similar or different disabilities and be cared for.
Claire House was also there for Jenny and her family during a really difficult time. “Hannah was really ill and my mum was in hospital, I thought gosh who am I going to reach out to? “When you have kids with additional needs it’s not like anyone can have them. Eva needs changing, and she has got to be in a house that a wheelchair can get in. But when I phoned Claire House, they said give us a minute, then they phoned back and said they’d come and collect her. She stayed for eight days. So, I know if I need them, they will be here.
“There is nothing clinical about it, it is homely and nurturing. As the entire family can stay, you can check on your child whenever you want, it’s open and accommodating.
Eva also loves dancing. “If you see her at the Claire House parties you think she’s going to topple out of her wheelchair. She dances so hard, you have to put the brakes on. She can really move.
“People think that hospices are places that you go to die, but for Eva it’s where she can go and meet children with similar or different disabilities and be cared for.”
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“When Eva is at the hospice, she’ll talk to anyone about anything. She loves the art room. She goes there as soon as she arrives. She also loves music and the music therapist Wendy, who she sings chart songs with. “She loves Katy Perry, and Phil Collins’ song Another Day in Paradise. She really likes karaoke, even if she doesn’t know the words; she’ll just make them up but keep the tune.”
Eva painting with Kellie
Paul and Angela never imagined needing a children’s hospice, but here they share how Claire House became a sanctuary of love, kindness and support for them and their son Jude.
Claire House was sanctuaryour
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At a few days old, he started having terrifying seizures that were uncontrollable; sometimes he could have 15 a day. It was tough; we did not have any answers at first. After months of testing, we were told that Jude had a condition called D-Bifunctional Protein Deficiency. We knew the prognosis was not good and that Jude would need 24-hour care. He regularly needed oxygen, was fed through a tube into his tummy, required numerous medications and his condition affected his eyesight and hearing.
The Claire House team were there to reassure us. We were able to stay at the hospice for a week, knowing that Jude’s care, medications and feeds were our responsibility, but that the nurses were on hand if we needed any support.
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Jude was adorable, he was just beautiful and we loved and adored him.
You do not know how important a children’s hospice is until you need it, until you are thrown into the whirlwind of having a poorly child.
That is when we were introduced to Claire House Children’s Hospice. Nurses Laura and Kat came to visit us in hospital; they told us all about the hospice and took us to have a look around. You imagine it to be clinical and sad but it was not. We fell in love with the place. When Jude was 10 weeks old we were able to take him home from hospital, but it was daunting. As much as we wanted to bring our baby home, we were scared.
Jude with mum, Angela and dad, Paul
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The Butterfly Team took away the worry of having to think or organise anything, they helped to plan Jude’s funeral and we could just spend time with him knowing everything was taken care of. Claire House was our sanctuary, our happy place, without them there would have been a void. They helped us create so many treasured memories. The things that seemed small at the time are now so significant. His hands and footprints take centre place on the fridge and it is so nice to look at them every day. Without Claire House, we would not have that. Even now, they check in with us to see how we are doing. It is so nice to know that they are always here for us.
“They helped build our confidence so that when we did go home, we were prepared. The nerves were still there but the team at Claire House helped to put us at ease.”
They would organise trips to Chester Zoo and make keepsakes of Jude’s hand and footprints.
They involved him in lots of activities, whether he was in the art room creating pictures or making lots of noise in a music session.
They helped build our confidence so that when we did go home, we were prepared. The nerves were still there but the team at Claire House helped to put us at ease. We stayed at the hospice regularly as a family. The staff would always make us feel so welcome and we could relax and just be mum and dad, safe in the knowledge Jude was receiving the best care.
Jude’s health took a sudden turn at 15 months old. He passed away at Alder Hey and within hours Shelagh and Sharon from the Claire House Butterfly Team were there to support us.
They wrapped him in a blanket and Angela cradled him in the car during the journey to the Claire House Butterfly Suite, a room where Jude could rest after he’d passed away. It was so special to have that extra time with Jude. We could be there 24-hours a day with music playing and his teddies all around him. We always knew the Butterfly Suite was there but we never really knew what it was. It was not until the time came that we realised how special it is. It meant we could have privacy in a lovely tranquil setting, our family could visit and we could sit out in the garden.
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“Our singing group is an opportunity for parents and grandparents to be with others who understand what they have been through, and to take part in an activity together that is both relaxing and transformational.”
stronginsideSomethingso
“I love the singing group because it is my time away from my stressful life. Afterwards I feel very calm and relaxed. I love singing Labi Siffre’s ’Something Inside so Strong’; it is so empowering,” said mum Clare Large.
Gill Tarlton agreed: “I love singing; I’m known in my family as the party animal who always sings and dances! The singing group helps me to forget about everything that I am dealing with and all my worries about my child, for two hours.”
The group takes place once a month and is open to all singing abilities. It is a chance for parents and grandparents to come together and sing in a warm, welcoming environment that helps them to release pent up emotions and feel good.
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Hear how singing is helping to lift spirits, build bonds and release pent up emotions for the mums and nans that the hospice supports.
From laughter yoga to crazy golf, our counselling and therapy teams organise several groups and events for bereaved parents and parents of seriously ill children. These provide an opportunity for them to recharge and chat with others in a safe and comfortable space.
Mum, Debbie Devereux- Roberts, said: “To do something that I love with a group of people from Claire House is very special. It gives us a couple of hours to relax and forget for a while about all of the craziness that is going on in our lives. We sing, we laugh, and we come out ready to face our lives again.”
It is because of you that we can be here for mums like Debbie, Clare and Gill, thank you.
One of these groups is a singing group for mums and nans, led by counsellor Sarah Baker. Sarah said: “Our singing group is an opportunity for parents and grandparents to be with others who understand what they have been through, and to take part in an activity together that is both relaxing and transformational.”
PRINCE LEO Hear from mum Leah about how your support means she and her son Leo receive the royal treatment from the hospice team. 16
Leo is four years old and needs round the clock care, he is fed through a tube into his bowel, as his tummy cannot cope with feeding anymore.
“He loves to be made a fuss of and that is exactly what happens when we come to stay at Claire House.
Leo can often struggle with pain, which means he needs lots of medicines and care to make sure he is comfortable and happy.
“Leo is my little prince, he’s a cheeky boy who loves to be pampered, bounced around on my knee and smothered in kisses and cuddles.
It was then that Leah was introduced to Dr Susie, Palliative Care Consultant at Claire House.
“We were first introduced to the hospice when Leo was just a few months old. He had a cardiac arrest which caused a brain injury and has resulted in him having complex medical needs,” says Leah.
Leo with mum Leah
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“The hospice has been there for us since Leo was a baby, but in the last two years Claire House has become a huge support for us.
“Dr Susie has been amazing, she now oversees Leo’s care when he is in hospital, she helps to manage his pain and is a really good advocate for Leo.
“At the age of two years old, Leo began to deteriorate and we spent weeks in hospital.”
Dr Susie’s role means she works alongside our hospice nurses and hospital consultants, caring for children who are seriously unwell.
“When we stay at the hospice I feel like I can just be Leo’s mum. I get to do all of the nice things with him, like cuddling and playing without having to worry about his medicines.
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“They help us to have fun and create memories, from pampering Leo and animal visits in the hospice to arranging for us to take Leo ice skating in his wheelchair for the very first time.
“We’ve also been able to make new friends through Claire House. I met another mum Leo with mum Leah
“Instead of going to hospital to manage Leo’s pain and to start new medicines, we can come to Claire House. The hospice nurses make sure Leo gets the best care and is comfortable. We are more relaxed because it feels like home,” explains Leah. Leah and Leo also enjoy respite stays at Claire House. These planned breaks mean they can spend time together at the hospice. It gives Leah an essential break from having the responsibility of providing all of Leo’s medical needs and from being on constant call.
“She supports me at complex medical appointments and she helps me to put across my opinions and makes sure I am heard,” shares Leah. With the support of Dr Susie and the hospice team, Leo is able to spend less time in hospital.
“Leo has a lovely time too. He has complementary therapies, where he gets foot massages and falls asleep because he’s so calm and he likes relaxing in the hydrotherapy pool.
“I stay at the hospice with Leo, so I’m still with him, but I can get a good night’s sleep and can take some time to myself and relax.
“Looking after this amazing duo is a pleasure. I work closely with them and their fantastic community nurses, plus other hospital consultants and teams. Leo’s symptoms are complex and he is on many medicines to keep him as well as possible.
“It’s the people at Claire House who make it such an amazing place, from Dr Susie and the care team who take care of all Leo’s needs, to the housekeeping team who go above and beyond to make sure the rooms are made up especially for us. It’s just like home.”
called Katie during a stay and we got talking. We exchanged numbers and now we talk every day, it’s so nice having someone to relate to and share advice with. “Leo and Katie’s daughter Ava are friends too, Claire House recently organised a pamper day for them both, with face masks and massages. They loved stretching out and chilling on the beanbags. It was so nice.” says Leah.
“It is important that parents like Leah can access help and support when they need to so that they can keep doing an amazing job.”
“When we stay at the hospice I feel like I can just be Leo’s mum. I get to do all of the nice things with him, like cuddling and playing without having to worry about his medicines.”
“What happened to Leo could have happened to anyone. It turned Leah from a ‘normal’ Mum into a carer, a nurse, a secretary and PA as well as being a mum.
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Ava and Leo relaxing at a pamper session
Dr Susie Holt
“Thanks to Claire House, I was able to experience one of the most precious memories and wishes we have asked for. Evie Kate is a little diva who wanted nothing more than to buy a swimming costume and, for the first time in four years, go swimming. She had so much fun and it’s a memory I can treasure forever thanks to the brilliant team at the hospice,” shares Abbie.
Evie Kate was staying at Alder Hey and hadn’t been in a swimming pool in years. Our team made it possible for Evie Kate to leave the hospital for a couple of hours for a session in our hydrotherapy pool, whilst still receiving the very best care.
After two years, Claire House Does Strictly finally returned to the dancefloor. Lorna Bent from Warrington, who danced the Samba to Jason Derulo’s ‘Tip Toe’ with professional partner Chris Milward from Cadman’s Dance Centre, won the Glitterball trophy.
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Lorna said: “It was something that I always wanted to do, and after first signing up in 2020 it was amazing to finally take to the dancefloor. Claire House is a beautiful charity and does so much work for children and their families; it was great to do it for them.”
PRECIOUS MEMORIES
Recently, the team at the hospice were able to help Evie Kate and her mum Abbie create a magical memory together.
LORNA SAMBAS TO GLITTERBALL GLORY
The event was sponsored by HSBC and raised over £37,000 for Claire House.
OUR HOUSE NEWS
“Alfie spends time at Claire House and it’s a godsend to him, myself and of course the other poorly children. I will continue to do the best I can to support such a great cause,” said Neil.
Neil’s fundraising means we can continue to be here for families just like his.
Claire House dad, Neil, recently raised over £32,000 through a charity fishing match.
FOR LITTLE SISTER POPPY Daisy, age 4, wanted to raise funds for Claire House in memory of her little sister Poppy Hope. After learning how to ride her bike, she cycled 3K around the MumWirral.Jenna said: “Our beautiful baby girl Poppy sadly passed away shortly after she was born in May 2020. With Poppy’s second birthday approaching, Daisy wanted to do something special. She had just learnt to ride her bike, so decided that she would cycle for Claire House.”
“We all have a real connection to Claire House and will continue to support this fantastic charity into the future.”
CYCLING
RAISE OVER £20,000
Daisy raised over £600 for the hospicea huge thank you and well done, Daisy!
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This is the third fishing match Neil has organised raising over £50,000 for the charity.
FIN-TASTIC CHALLENGEFISHING
The match took place in France and saw anglers travel the 700-mile journey to take part.
Clifford Grange staff members Fran Deakin and Winnie Hunnikin serve the residents afternoon tea in aid of Claire House every week.
Neil’s son Alfie is supported by the hospice, where he comes to stay for respite care.
RESIDENTS
Fran said: “Each week the residents give £1 for Tea & Coffee Club, then Winnie and I donate the profits to Claire House. It’s amazing how it’s built up over that time.
For over 20 years the residents of Clifford Grange retirement home in Birkenhead have supported Claire House, donating over £20,000 in total.
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