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our house CLAIRE HOUSE SPRING MAGAZINE 2022

CELEBRATING THE mILESTONES

Because of you we are there to hold the hands of families like Oliver’s through the ups and the downs.

WELCOME TO OUR HOUSE Hi everyone, I’m Amelia and I’d like to welcome you to the Spring 2022 edition of Our House magazine. The team at Claire House are like family to us, they’ve been there to support me and my fiancé Brian since I was pregnant with our son Oliver - who you’ve seen on the front cover. Claire House have helped us through some really difficult times, but they’ve also helped us to focus on the positives, make memories and celebrate the milestones.

have had someone there to hold our hands through the ups and the downs.

In this edition, you will read about how Claire House have supported our family and how they are there for many more families like ours.

I hope you enjoy reading this issue of Our House and hearing all about what has been happening in and around the hospice.

We would like to say a big thank you because without your help we wouldn’t

Amelia, Brian, Oliver and Princess the dog

Love

Thank you Thank you 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.

Editor: Jessica Arnell jessica.arnell@clairehouse.org.uk Contributors: Hannah Shannon, Laura Kelly, Mark Pearson Photography: Jump-Imaging C.I.C, Fotopia Design: coppermedia.co.uk

With special thanks to The 64 Trust for their funding which, amongst other projects, is enabling us to develop a Complementary Therapies Suite at Claire House Liverpool, and is contributing to our antenatal services.

Claire House Children’s Hospice, Clatterbridge Road, Bebington, CH63 4JD 0151 343 0883 www.clairehouse.org.uk Registered Charity no: 1004058 Company no: 02620240

CONTENTS 4

A CUPPA WITH OUR CARE TEAM

Join our Care Team over a cup of tea and hear about how this year they have continued to provide the very best care to babies, children and young people.

8 10

HELPING US THROUGH THE WORST TIMES

Learn how mum Amelia and dad Brian were supported by the hospice after they were told their son Oliver was going to be born with a heart condition.

BABBLING, BEATS AND BONDING

See how Claire House baby group offers everything you would expect of a baby group, but with added support and understanding.

HOPE FOR THE BEST, PLAN FOR THE WORST

Perinatal Palliative Care Nurse Consultant, Katrina Williams, explains how your support means her team can be there for new and expectant parents.

A SANCTUARY OF RELAXATION AND CALM

Hear from Jane, Complementary Therapy Co-ordinator, who helps to offer moments of relaxation to parents who are facing a complex pregnancy.

OUR HOUSE NEWS

Catch up with the latest news from your local children’s hospice.

a cuppa with our care team

Over the last year, our care team have provided the very best of care to over 400 seriously and terminally ill children. We thought you might like to join them over a cup of tea to hear how things have been. 4

Meet Cheryl, Gail and Tenneigha, who work in the hospice caring for the children and young people during their stays. It is their job to provide clinical support and also ensure the children have a really good time. Tenneigha: “I started at Claire House five months ago and there have been so many special days. Since starting what has really stood out to me is how much the team support each other. Working in a children’s hospice means there can be really hard days but the support from the team makes it easier.” Cheryl: “Every couple of months we have a young adults’ weekend, where a group of lads we support take over the hospice for a weekend of fun, music, computer games and pizza. “I love to be involved in these weekends. Recently, we had a Taekwondo teacher come in. She was great and so engaging with all of the lads. Angharad and Laura

“One of the lads in particular, has been coming to us for years and has been so shy, but while he was punching the mats, he was so loud – I have never heard his voice so loud before. It was very moving.” Gail: “Like Cheryl, I have really enjoyed the lads weekend. It’s great to see the boys enjoying themselves and they always make these days so much fun for themselves and the staff supporting them.” “We have been working so hard and while times have been challenging, the support across the team has made those days so much better.” Meet Laura, one of our nurses who works in the community, supporting families wherever they need us, whether that be in hospital or in the family’s home.

Laura: “The nature of my job is unpredictable, one minute I could be in a clinical meeting and then by the end of the day, I could be in a child’s home doing some memory making because they’re in their final days of life. But that is why I love my job, it’s an absolute privilege to be able to be a part of that. “I can spend a lot of my day treating and caring for the children and young people we support, but what is great about my job is that I get to help families make memories together. “From recording a child’s heartbeat for inside a teddy bear, to making hand and footprint canvases, we help make special moments for the child and something that the family will cherish forever.”

When you are speaking to families they might be struggling at that time, so to be able to arrange a stay or additional service for them, always feels like a success. Meet Angharad and Sylvia, who work behind the scenes and act as a family’s first portof-call, ensuring they quickly get the right support from Claire House. Angharad: “We are the key contacts for all the children who come for respite and day-care at Claire House, helping families to get the right support at the right time. For families needing some extra support, we can refer them on to our wider teams such as Symptom Management, Physio, or Complementary Therapies. We can put them in touch with our Family Support team who can offer counselling, music therapy and sibling support.”

Sylvia: “When you are speaking to families they might be struggling at that time, so to be able to arrange a stay or additional service for them, always feels like a success. The difference that one phone call can make, just checking in with parents, speaks volumes.” Angharad: “We can help by pulling different teams together. This is really rewarding and means so much to the families that need that support. This may be a family at a really low point, and by arranging some complementary therapy, we give them a little boost, or a child that is struggling with particular symptoms who we refer to Symptom Management for assessment.”

Hope for the best, plan for the worst

Katrina Williams, Perinatal Palliative Care Nurse Consultant, explains how her team provides vital support to new and expectant parents. It’s hard to imagine what it feels like to be told when you’re pregnant or have just given birth, that your baby might not survive. That is why my team offers specialist care and emotional support through pregnancy, birth, a child’s life and, sadly for many, their death. The team works closely with the Liverpool Women’s Hospital along with other hospitals within Merseyside and Cheshire and receives funding from NHS Liverpool Clinical Commissioning Group. Pregnancy can be a very lonely time, feeling unsupported and unprepared for the uncertainty of not knowing what will happen, so we can offer support at medical appointments that can be lengthy and complex. We also run a ‘Gentle Birthing’ antenatal course with our specialist midwife. It gives parents whose pregnancy is complex, the chance to meet with other parents in similar situations. Our nurses help families make birth plans discussing all eventualities, helping families ‘hope for the best, plan for the worst’. The team brings in a little light during such a difficult time by offering complementary therapies such as reiki and reflexology. Throughout the pregnancy, we encourage memory making with

‘Bump’ photography sessions and heartbeat bears made with the sound of baby’s heartbeat. We can also be there when their baby is born and the team help families make special memories like footprints, silver charm jewellery and professional photographs. Our baby group can provide ongoing support to parents and their babies up to the age of 18 months old, where they can access specialist advice but more importantly meet other new parents. In the tragic situation where a baby is unlikely to survive, families can choose whether they want to stay in hospital, go home or come to the hospice. Our team are there to help families spend precious time outside of a medical environment, where many have said they feel like ‘real’ parents for the first time whilst having skin to skin cuddles without any tubes attached. If a baby sadly dies, we can help with the arrangements that need to be made and have bereavement groups dedicated for baby loss, where families can get counselling and build friendships. Whatever happens, our team will be there to hold a parent’s hands and provide support every step of the way. But there are still plenty more families who need us, that is why your continued support is so important.

Helping us through the worst times When Amelia and Brian were told their son Oliver was going to be born with a heart condition, Claire House were there to support them every step of the way.

It was at their 20-week scan that mum Amelia and dad Brian received the news that is every parent’s worst nightmare. “We were told something was wrong with his heart and that we’d be called back for another scan in two days; they gave us a leaflet about heart defects and sent us home. Those two days were awful, it was scary,” shares Brian. It was then that Amelia and Brian were told their unborn son had a critical cardiac condition. They were introduced to Kat, a Perinatal Palliative Care Nurse Consultant at Claire House. “We needed professionals to help us through a scary and uncertain time and that’s what Claire House did,” explains Amelia. Kat was there to support at appointments and help Amelia and Brian understand complex medical meetings. She also helped them put together a birth plan.

“I found making the birth plan a really calming experience. We planned for every scenario. It was nice to put it together when we were in the right state of mind. “We shared this with all the medics involved in Oliver’s care and it meant going into the birth I could focus on Oliver because everyone in the room knew what our wishes were, whatever the outcome.” Claire House also helped to create some positive memories during a really difficult time. “We had a bump pregnancy photoshoot, which even our dog Princess got involved in. It was a lovely keepsake because if anything did happen, we had those memories,” says Amelia. “We decided to have an elective C-section and Kat was there for Oliver’s birth. “When we went in for the C-section, Brian wasn’t allowed in straight away because of Covid restrictions and so I had to sit in a waiting room on my own. “It was horrific; I was in tears waiting to be called. I heard Kat’s voice and I remember thinking ‘thank God you are here’. “She calmed me down and walked me to the theatre where we met Brian. I honestly don’t think I could have got there without Kat.” Oliver was born on 8th December 2020 and was taken straight to the Neonatal Intensive Care Unit.

Oliver

It was confirmed he had a critical cardiac condition, but that they could offer surgery.

“It was very stressful, but Claire House are always there when we need them,” says Brian. “I’ll always remember when Oliver was in hospital, he’d had a really bad night and I hadn’t slept. Lucy came in and took me for a coffee, sometimes you just need someone to tell you it’s okay to take a break and that’s what she did. It’s just something as little as a coffee and a chat that makes such a big difference,” shares Amelia.

Oliver with mum Amelia and dad Brian

“Throughout our time in hospital, the team checked in on us and helped us make memories. They made Christmas baubles with Oliver’s footprints on and helped us to celebrate Oliver’s first birthday.”

“We needed professionals to help us through a scary and uncertain time and that’s what Claire House did.” This meant Oliver needed to have a heart operation at four-weeks-old, an operation which was complex, but he recovered well and after three weeks, the family were able to go home. “We were invited to the Claire House baby group, where we met Health Care Support Worker, Lucy. The group is so nice because we get to meet other parents going through similar situations. It’s a support bubble,” shares Amelia.

After almost three months in hospital, Oliver was able to come home on New Year’s Eve. He is now 15 months old and is sitting up and babbling away. He needs to be on oxygen and struggles with feeding so is fed through a tube into his tummy. “Despite everything he’s been through, Oliver has always been a happy baby. He very rarely cries and he’s always smiling. He adores the Teletubbies, his doggy Princess and shaking his favourite maraca,” explains mum Amelia.

In October, Oliver had a second operation. Unfortunately, two weeks after the surgery, he was rushed into intensive care and put on life support.

“Claire House are like family - they make bringing up Oliver easier and calmer. They’re a support network that we never knew we needed.”

They found a vessel in Oliver’s heart had opened and he needed emergency surgery.

You can follow Oliver’s journey on his Instagram page @oliver_chdbaby.

A sanctuary of relaxation and calm Meet Jane, Complementary Therapy Co-ordinator, who helps to offer moments of rest and relaxation to parents who are facing a complex pregnancy. Jane delivers therapy sessions appropriate for expectant mothers whose babies are likely to be born with complex health needs, allowing them some much-needed time to relax as well as managing symptoms of pregnancy through massage or reflexology. “At Claire House we offer a range of therapies – massage, reflexology, aromatherapy, reiki and crystals. My aim is to develop an emotional toolkit and explore skills that can be used to help in stressful situations,” explains Jane. By sharing mindfulness and breathing techniques, meditations and providing specially tailored aromatherapy blends, mothers can find calm during times of anxiety. These sessions allow parents to have positive experiences during a complex pregnancy. “We can support families through a pregnancy that’s filled with emotion and offer compassionate care to meet the individual needs of the parent.” Bereaved mum Laura, whose son Ollie died shortly after birth, said: “Having complementary therapies with Jane is my

peaceful place. It is the only thing that has truly helped me with my mental and physical health. It really has been my saving grace and I can’t speak highly enough about the benefits and difference it’s made to my life.” “I feel privileged to be able to form a one-to-one connection and make a difference to parents, ensuring that their journey is more manageable, whatever the outcome,” said Jane. “I like to use all of the senses to create a happy place where parents have the ability to cope during anxious or stressful situations. A happy place can be in the therapy room, your garden, having a cup of tea on a bench or being at the beach. It depends on the individual. The aim is to allow people to be able to access their happy place whenever they need to. “What we offer in our sessions is a sanctuary of calm and an opportunity to relax. Meditation, breathing techniques and physical and mental calmness are so important in day-to-day life, especially when you are going through an uncertain pregnancy or are the parent of a newborn who is poorly.”

“The aim is to allow people to be able to access their happy place whenever they need to.”

BABBLING, BEATS AND BONDING Our baby group is a fun-filled session for parents and seriously ill babies to do everything you would expect of a baby group, but with added support and understanding. The shaking of maracas, bean filled trays, the sound of babies babbling and nursery rhymes being sung might not be exactly what people expect to happen at a hospice, but this is exactly what happens twice a month at the Claire House baby group. Baby group is a relaxed stay and play session for parents and seriously ill babies up to the age of 18 months old. The group’s main aim is parental peer support. There is opportunity for parents to join in the activities but just as importantly, they can have a chat over a coffee with other parents.

The group is run by Health Care Support Worker, Lucy, who is on hand as a source of information and advice for parents. “For the parents of a seriously ill baby, attending a baby group can be difficult. Their child might not be meeting developmental milestones and they can have equipment and medications, so attending a group where others don’t understand is hard.” “For many parents it is reassuring to chat with others who understand the things that affect them such as tube-feeding, how to deal with seizures or the pressures of caring for a child with a serious illness,” says Lucy.

Nathan enjoying activities with mum Camila

Mum Camila and dad Ben have been attending the group with their son Nathan for five months. Nathan is 10 months old and has a condition which means his kidneys do not function as they should. “At Claire House baby group there is no judgement; we can just turn up and have fun. Sometimes it can be hard going to other groups, we feel like we have to explain Nathan’s condition. Here there is no explaining and no comparing. It’s nice to see other babies with tubes and it makes us feel like we’re not alone,” says Ben.

Georgia having fun with bubbles

“We find the group is an outlet for us to talk to others, who have similar experiences to ourselves. The group has been a big support, we’ve made friends and have a group chat so we can keep in touch. If one of us is in hospital or needs advice, we’re all there to support each other,” shares Camila.

Luca loves socialising at the group

During each session Play Specialists make sure everyone has fun with lots of activities and sensory play for the babies to get involved in. “There’s lots of baby massage, stories, music, and every baby will take away something from the group. Whether it be a hand and footprint painting or a cotton wool sheep, there’s always arts and crafts that they take home and stick on the fridge just like for any other baby,” explains Lucy. “We try to make things as the parents would expect them to be. We know that so much of their journeys have been different, so we try to make things as they would find them at any other group.”

“We find the group is an outlet for us to talk to others, who have similar experiences.”

Mum Vicky and 16-month-old Luca also attend the group. “Luca loves coming along to the group. He loves socialising, so it’s lovely to see him playing with the other babies. He also likes music and dancing but his heart condition means he can become tired and breathless quickly, at Claire House baby group people understand. At other groups I’ve been asked questions like ‘why is he tired, he hasn’t been up for long?’ or ‘Is he better now?’. But here I don’t have to explain, they just understand. “I get to chat with other parents who have shared experiences. It’s nice to be able to get out the house, have a cup of tea and be able to relax surrounded by others who just get it,” says Vicky. It is thanks to you that parents like Camila, Ben and Vicky have a supportive and safe environment to come together, share experiences and have fun with their babies.

OUR HOUSE news WIRRAL KAYAK CHALLENGE Since 2012, Mike Dudley has organised the annual Wirral Kayak Challenge, raising £35,500 in total for the hospice. Only a handful of people took part in the first event, and now each year over 100 brave kayakers travel by sea around the Wirral Peninsula, starting in New Brighton and finishing at Thurstaston.

FISHING CHALLENGE RAISES £100,000 IN MEMORY OF ELLIE Along with his family, friends and local fishing fanatics, Colin Cook has raised over £100,000 in memory of his daughter Ellie. Colin set up the Claire House Club Challenge in 2012, a fishing match which sees teams of anglers compete against each other and raises funds for the hospice. Claire House supported Colin and his family when his daughter Ellie was diagnosed with a brain tumour. She passed away in September 2011, aged seven. “Claire House were there for our family and we want to make sure they are there to help future families, just like ours,” said Colin. To mark Ellie’s 18th birthday, the family were determined to reach a fundraising milestone of £100,000. Which they surpassed, raising an incredible £106,800. “Without the kindness and generosity of local fisheries, their owners, tackle shops and everyone who takes part, we wouldn’t have been able to raise such a huge amount of money, I can’t thank them enough.”

Mike said: “It’s amazing how much money has been raised for Claire House; I am so proud. This is a challenge that everyone can do – seasoned kayakers or beginners. The event has grown bigger every year and it’s amazing to see so many local people get involved.” For information on the 2022 event, please search Wirral Kayak Challenge on Facebook.

SHOPAHOLIC TO FUNDRAISER Claire House shop manager, Jill Boyd was a self-confessed shopaholic but with non-essential shops closed due to Covid she decided to do something about it. Jill, who had eight wardrobes full of clothes and over 100 pairs of shoes, decided to stop shopping. Instead, friends and family sponsored her not to buy any clothing or shoes for a whole year. “I made my own little shop in my spare bedroom using all the clothes and shoes that I had never worn,” explained Jill. Jill completed her challenge in December 2021, having raised over £1,100 for the hospice. “I’ve realised that I do not need 12 pairs of black jeans and boots in every colour; I now have a few key pieces and for each item I now buy I donate a bag of clothing to the Claire House shop.”

POCKET MONEY HEROES

TOUR DE WIRRAL AND BEYOND

Kaitlyn age 9, and Stephen age 13, have been donating to Claire House each year since 2013.

Pippa, age 7, recently learnt how to ride her bike without stabilisers.

They save up their pocket money all year round and donate their savings each December. So far, they have made a total of nine donations, raising over £400!

During half term, Pippa decided to celebrate this achievement with 30 of her friends. They all set a goal to cycle a collective 250 miles, to raise money for Claire House.

When asked about these donations, Stephen said: “We don’t do it for the reward. We do it for the satisfaction.” Kaitlyn adds “it is nice to be nice”. Any selfless acts of generosity, like Stephen and Kaitlyn’s, are greatly appreciated by everyone at Claire House. Pippa said: “I wanted to raise money for Claire House because I wanted to help children and their families who need help and support.” Pippa and her friends ended up cycling an incredible 415 miles in total and raised an outstanding £2,020 for the hospice! “I’m really proud of what my friends and I achieved. I’m now trying to work out how to raise more money for Claire House,” shared Pippa.

thank you

for your support If you wish to continue to show your support by making a donation today, please fill in this form. Don’t forget, if you are a tax payer and you complete the Gift Aid declaration your donation will be worth an additional 25p for every £1 donation at no extra cost to you. If you’d prefer, you can set up a regular donation by visiting clairehouse.org.uk/donate

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A LASTING LEGACY Pat lived life to the full and loved making special memories. Born in Liverpool, an only child and without children of her own, she dedicated her life to helping others in her community and across the world. Pat sadly passed away in 2018 but she left a wonderful legacy. A gift in her Will to Claire House ensures that children and families who come to the hospice, can enjoy precious moments in her memory. Pat loved to have fun. From husky sleigh riding to skydiving, she enjoyed spending time with friends and family and one of her many passions was travel. Travelling to Australia, Bali, Dubai, Hong Kong, Sri Lanka and Vietnam to name a few, she collected 120 albums of holiday photos and special memories. On each of her trips, Pat would take with her a very special ‘Teddy’. It became a tradition to take photos of Teddy in wonderful places. A deputy head teacher at Leasowe Primary School, Pat would send postcards back to the children at school to share Teddy’s wonderful days out and travels.

Pat thoroughly enjoyed life. She was caring and loved to help others, arranging fundraisers for many charities including Claire House. Following a visit to Claire House, Pat’s closest friends said: “It is really good to know that by leaving a gift in her Will, Pat has left a lasting legacy that will continue to make a difference.”

To find out more about our FREE Will writing service please visit clairehouse.org.uk/wills or call 0151 343 0883