Our House Spring 2021

our house CLAIRE HOUSE SPRING MAGAZINE 2021

when hospital is home

Because of you, we are there for children like Liam, wherever and whenever they need us.

WELCOME TO OUR HOUSE My name is Jordan and I’m 20 years old. I’d like to welcome you to the Spring 2021 edition of Our House.

I love coming to Claire House Children’s Hospice. I get to have a laugh with my friends and spend time with people who understand me. Here, you can read all about how the hospice has been there for young people like me throughout the pandemic (page 8).

In this issue, you will see how, thanks to your support, Claire House has continued to offer essential services. You’ll meet Liam who is on the front cover and learn about some of the positive things that have happened during the uncertain times we’ve faced.

I hope you enjoy reading this issue of Our House and finding out all about the work you support. A big thank you from me!

Jordan

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, Natalie Parker-Jones Photography: Jump Imaging C.I.C, Design: coppermedia.co.uk

Claire House Children’s Hospice, Clatterbridge Road, Bebington, CH63 4JD 0151 343 0883 www.clairehouse.org.uk Registered Charity Number 1004058 Company number 02620240

CONTENTS

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8

Hear from our Director of Clinical Services about how your support has meant we have continued to offer essential care to children and families at the most difficult of times.

Learn how we’ve been there for the young adults who rely on the hospice, when they were finding lockdown difficult.

OUR SERVICES ARE ESSENTIAL

IN THEIR OWN WORDS

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LEARNING FROM EACH OTHER

See how our nurses and the children from Moreton Primary School have been supporting each other.

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At times it’s been hard to look on the bright side. See some of the positive things that have happened at Claire House thanks to you.

Mum Zoey has lived with her son Liam and daughter Scarlet in hospital for the past year. Read how you have helped the family through an impossibly hard few months.

AFTER EVERY STORM COMES A RAINBOW

WHEN HOSPITAL IS HOME

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OUR HOUSE NEWS

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

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Jan Sutherland Oakes, Director of Clinical Services

our services are essential The last year has been incredibly challenging, but your support has meant we continued to care for children and families at the most difficult of times. Our Director of Clinical Services Jan Sutherland Oakes explains why hospice care is so vital.

It’s been an absolute rollercoaster of a ride for the team at Claire House. It’s been a time of highs and lows but overall we have a real sense of achievement.

We thought, if it’s hard for us imagine what it’s like for the families who really need our support? When other hospices closed their doors, we kept going and said, “what can we do and how can we do it differently?”.

I know it’s been exhausting for everyone, but if you’re looking after a very sick child, you’ve been shielding at home with little outside support, whilst trying to home-school other siblings, you really have been pushed to your limits. That’s why we kept the hospice open, so there was somewhere for families to turn in the case of emergency.

We ’ve had a lot of children referred to us with very complex medical conditions. We could have said no but we didn’t. Working in partnership with our local hospitals, we made situations that seemed impossible, possible and were able to offer the very best medical care and emotional support.

Sadly, there have been a lot of deaths over the last 12 months. These were not related to Covid and while facing the death of a child at any time is horrendous; the impact of the pandemic restrictions made this even more difficult. It has been so important to have been able to provide end of life care throughout this time supporting families at home or in the hospice. The support that would have normally come from friends and family hasn’t been possible, so families have needed us more than ever.

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We didn’t restrict visits for children receiving end of life care and were able to allow parents to stay and other relatives to be able to say goodbye in a safe way. Families will have to live with the death of their child, so we had to make sure they had the best experience and had the opportunity to create lasting, treasured memories.

A funeral is often an opportunity to celebrate their child’s life – but that is much harder to do when you can only have a few people there. Our Butterfly team, who look after bereaved families, have had their skills pushed to the limit, finding new ways of creating special memories and supporting families to plan their child’s funeral.

Over summer as soon as the restrictions allowed, we were able to book in some planned stays to give families a desperately needed break. We have been able to continue and increase these despite further lockdowns. We have also been able to continue to provide lots of support services like counselling online.

While at times it has been really hard, there has been fun and celebrations. We created an amazing Christmas grotto at our Liverpool site, had online quizzes and gameathons and princess pampering parties, all Covid safe, of course. The hospice has been full of rainbows and superheroes.

There were times when Covid felt neverending, but it now feels much more under control. Now things feel safe we can think about the future. This won’t go on forever. The good thing is that we’ve learnt a lot about how we can do things better.

I am proud to say, when life has been at its most challenging, our team have been at their very best. They could only do this because of your support. Thank you for helping us to give families the best experience in the most awful of times.

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Nurse Loz Palmer, Head of Care Workforce, Education & Quality, explains how she has helped put safety first during the pandemic: Infection prevention and control has always been a small part of my role here at Claire House, but not anymore!

At the end of January 2020, news started coming through about what was happening in Wuhan. All healthcare organisations were told to get prepared, which we did. We bought small supplies of PPE and wondered if the virus would even make it as far as the UK. By the end of February, it was very clear it was on its way!

Our mantra all through this has been “how do we keep everyone safe?” and “how can we implement all the requirements and still be the Claire House we are all very proud of?”

So, in true Claire House style, visors were adorned with cartoon characters or rainbows, gowns were made from a magical unicorn material. Even the wooden donkeys at the front door wore face masks, anything to help the children adjust to this strange new world.

We all miss the hugs, group activities and the hustle and bustle of a full hospice but we continue to do our best and can’t wait to open up fully.

We have accepted that some restrictions may be with us for a long time. We want everyone to feel safe and reassured as they return to the hospice and so we will do what is necessary to make that happen.

“Visors were adorned with cartoon characters” (Loz Palmer)

in their own words When things were so uncertain, your support meant our care team were there for the young adults who rely on the hospice. They’ve offered a listening ear, activities, lots of takeaways and a bit of normality when guidelines allowed.

Like most teenagers, the young adults we care for at Claire House have found lockdown difficult. Their health conditions have meant they’ve been shielding at home for what feels like forever, they haven’t been able to see their friends and home schooling seemed never ending.

Spending time with our care team means Daniela can enjoy herself and have fun in a Covid secure environment.

When asked what she is most looking forward to she said: “I really want to go to the pub with Pam and Rosie.”

Here Daniela, Liam, Noah, and Jordan share how Claire House has helped them and what they are most looking forward to when things return to normal.

Daniela is 19-years-old. Throughout the pandemic she has been spending time with Pam, a Health Care Support Worker and Rosie, who is a Play Specialist.

When she was asked what she gets up to with them, she laughed and said: “They are the best, we have so much fun and a good laugh together.

We do crafts, decorate cakes and get KFC.”

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Daniela spending time with Play Specialist Rosie

Liam, Noah and Jordan are part of a ‘lads group’ who get together at Claire House once a month for social activities and sleepovers. The group is run by Transition Coordinator, Andy, and Health Care Support Worker, Alex.

The pandemic has meant that their get togethers have been less frequent, but when restrictions have allowed they’ve met at the hospice for pizza, computer games and music.

For 20-year-old, Jordan, the group has meant he’s been able to gain some independence.

“The ‘lads group’ means a great deal to me, I’ve been able to spend time with people who understand me, and I can learn from others with the same condition and ask their advice and opinions.

“I also enjoy the social side of going to the groups and having a laugh. I feel without the help from Andy and Alex and the staff from Claire House it would not be possible for me to spend time away from home and gain more confidence and independence.

“I am looking forward to going back to the ‘lads group’ after lockdown because I enjoy

Noah loves having a laugh with his friends

playing board games and having fun which I miss a lot.”

Along with a few others, 15-year-old Liam and 17-year-old Noah, took part in a 24 hour gameathon during their last stay at the hospice.

“I can hang out and have a laugh with people who are like me. The staff are great too, we have fun playing Xbox and board games,” said Noah.

Liam said: “Having the group means I can socialise with people who understand me and don’t judge me. I like Jordan because he is funny and I like playing computer games and having fun with the staff, especially Alex.”

Like a lot of us, Liam can’t wait to spend some time in the sunshine. He said: “When lockdown is over, I am looking forward to having days out and going on holiday again.”

Jordan has gained independence

“Your support has meant that the fun and activities have continued at Claire House, at a time when many young people who come here could have been lonely and isolated. We’d all like to say thanks for caring,” said Andy, Transition Coordinator.

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learning from each other After learning about the work of Claire House, pupils from Moreton Primary School sent letters of love and support to the staff at the hospice. They couldn’t have come at a better time and for many the letters brought tears of happiness.

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Claire House nurses Clare and Becky couldn’t wait to thank the children and answer some of their questions about the hospice over a video call.

Here’s some of the questions the children asked and the answers Clare and Becky gave.

WHAT IS YOUR BEST MOMENT AT CLAIRE HOUSE? (JAKE, AGE 11) Clare says: “We make as many magical memories as we can. One of my favourites has to be when we helped one little boy enjoy the beach from his bed. He couldn’t go to the beach because he was very poorly and so we took the beach to him. We had sand, buckets and spades and a paddling pool filled with water. We tried to make it as special as possible for him and his family.”

Jake, age 11

WHAT INSPIRED YOU TO WORK AT CLAIRE HOUSE? (JASMIN, AGE 11) Becky says: “When I was a student nurse, 10 years ago, I came to Claire House for one of my placements and I fell in love with the place. I loved the children and the families and just seeing the work Claire House did, I knew I wanted to work here when I qualified as a nurse.

“It’s a wonderful job. It can be very sad, but making the sad times the best they can be is very rewarding.”

WHAT IS THE BEST ROOM AT CLAIRE HOUSE? (LEWIN, AGE 11) Clare says: “My favourite room at Claire House has to be the Art Room. The children love getting crafty in there and our Play Specialists are always being silly and making lots of fun things. There are always lots of smiles and laughter in the Art Room.”

Emma, age 11

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Becky says: “One of my favourites has to be the hydrotherapy pool. The children have so much fun in there. There is a disco ball and speakers so we can play the children’s favourite songs and there is a projector so the children and their families can swim and watch a film together.”

WHAT DOES A DAY LOOK LIKE AT CLAIRE HOUSE? (TEAGAN, AGE 11) Becky says: “Every day can be different, but in the morning we get the children and young people washed and dressed. We then have breakfast. After breakfast we might do an activity, that could be swimming, music therapy or art and crafts. We then all have lunch and do more activities. The children might just want to relax, so we do whatever it is they enjoy.”

Clare says: “As well as doing lots of fun things throughout the day, the nurses give the children and young people medicines. The children who come to Claire House can be very poorly, some might have 30 medicines a day or be fed by a tube into their tummy.”

HAS ANYTHING CHANGED SINCE COVID-19? (GEORGIA, AGE 11) Clare says: “Quite a bit has changed. We have to wear masks and visors and gowns with long sleeves. We can’t hug, which is a big change for us at Claire House, because when someone is sad we really want to comfort them with a hug.

Jasmine, age 11 (left) and Georgia, age 10 (right)

“We also can’t have a lot of visitors in the hospice, so there haven’t been any dinosaur visits or princesses popping by. Despite this, we are still trying to make the children’s stays really special.”

ARE THERE CLAIRE HOUSE’S ALL OVER THE WORLD? (EMMA, AGE 11) Becky says: “There are over 40 children’s hospices like Claire House all over the UK and children’s hospices all over the world, in places like Australia and Dubai, but there is only one Claire House. We have a hospice on the Wirral and a site in Liverpool, which we plan to develop.”

Clare loved the cards and letter

Clare, Becky and everyone at Claire House would like to say a big thank you to Year 6 teachers and pupils at Moreton Primary School. Their kind words and support have really cheered us all up and lifted our spirits.

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Helping families cope, when hospital is home Mum Zoey has lived with her son Liam and daughter Scarlet in hospital for the past year.

The support of Claire House has helped the family through an impossibly hard few months.

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We’ve been in Alder Hey for a year. I live in Liverpool, I moved close to the hospital to get home more but since then we seem to have just been in hospital. You can see my house from the hospital and yet I rarely get there.

Liam is six years old. He has an undiagnosed condition. He’s got intestinal failure, so he requires tube feeding 24 hours a day. He’s also on the autism spectrum.

He is a cheeky chappy. He loves everything there is about trains. He is very straight; he tells you exactly how it is, but he is really loving as well. He smacks out and shouts and gets quite distressed. He has no filter.

First, he had sepsis and since he recovered from that, he’s had chronic pain. They don’t know why it happens, but it just does.

“Liam doesn’t accept many people into his life but he really has accepted Katy.”

I’ve not got any family support, so my daughter Scarlet, who is eight, has been staying here at the hospital with Liam and me. It’s been quite difficult as she’s not been going to school.

They also have a brother but he stays with his grandparents. He can’t come into the hospital at the moment.

Every day is different with Liam, but we basically just sit in the room all day with him.

He doesn’t really like to play with his sister, so I have to try to keep them both entertained.

Liam’s got sensory issues and can’t cope with wearing clothes. So, when Katy from Claire House realised he likes to have the feel of something heavy on him, she got him a weighted blanket.

He originally told her to go away but we placed it by his feet and he slowly pulled it up over his legs, then tummy and under his chin and he had a big beaming smile on his face from ear to ear. He hadn’t smiled like that for a while.

Liam doesn’t accept many people into his life but he really has accepted Katy. She’s been an absolute angel; she’s helped him in so many ways and given us ways we can help him as well.

One of our special memories from the last year is a stay at Claire House. We had a lovely time away from the hospital. It was nice to see Liam

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KATY FOX, OCCUPATIONAL THERAPIST I am part of the team who support Liam.

I help children participate in daily life activities to improve their well-being and reach their potential.

When families are in hospital, our team provides emotional support and offer extra services, like physiotherapy, play and complementary therapies. We also do regular visits and attend clinical meetings, so we can work closely with hospital staff. be free from the ward. It was nice to see him be just a happy little boy and not sat in a hospital bed. He became a child again.

There was a massive train track in his bedroom and it was definitely a winner. He spent hours building the track. It went under his bed and everywhere.

My daughter, Scarlet, was very young when Liam was born and they’ve spent the majority of their lives in hospital. At Claire House we got to spend time together.

We can’t fix what families are going through or make their child better, but we can support them through it and be there for them. We also help families prepare for when their children leave hospital.

With all the families in Alder Hey, you see them going through an awful time and getting to build up a relationship with them is a privilege. You can build on that and support them when they leave hospital.

We went into the pool and did a lot of painting and drawing. It was nice to be a mum to both of them; rather than a nurse to Liam and constantly telling Scarlet I am busy.

I wouldn’t leave Liam on his own in hospital and I get very few breaks. During our stay at the hospice I got a few full night’s sleep, which is very different to how things are when I sleep on the ward.

As for the future, I am looking forward to just being able to go home from the hospital and Liam being able to go to Claire House. I just want to have a bit more of a normal life.

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After every storm comes a rainbow The past year, the world may have felt a little scary. We wanted to share with you some of the positive things that have happened, despite the unprecedented times we’ve faced.

HAVING A SPLASH ABOUT After shielding at home for nearly 12 months, five-year-old Mason, mum, Victoria and dad, Anthony, were invited into the hospice for a family splash session.

Mason loves bath time but the family recently moved into a bungalow which only has showers, so he hasn’t been able to splash around in the bath.

The warm water in the Claire House hydrotherapy pool stimulates Mason’s circulation and relaxes his muscles. This means he can move freely, splashing his arms and kicking his legs.

Mason and dad Anthony

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“After being home for almost a year, it was so amazing to get out and have fun as a family, whilst also helping Mason too. Mason loves splashing, so having the opportunity for water play was lovely and something we all enjoyed,” said Mum, Victoria.

READY TO LEARN Despite learning being virtual for most of 2020, members of our care team were still determined to gain further qualifications.

Cheryl, Aimee and Alice continued to study to become Assistant Practitioners throughout the pandemic, whilst still

supporting families at the hospice and balancing life at home. With the support from their friends and colleagues, they qualified at the end of last year.

Assistant Practitioner, Siobhan was also able to complete a higher apprenticeship for health and social care.

Cheryl said: “Over the last 12 months we have attended university online. This is a demanding course and I feel very proud of us all for qualifying, as well as working long, sometimes emotional shifts, whilst due to Covid, our home life could be difficult at times.”

Siobhan, Cheryl, Aimee and Tracey (Clinical Nurse Educator)

Their new qualifications mean they can bring even more skills to our Care Team, which will help us continue to provide the highest quality care to children and families facing the toughest of times.

THERE IS ALWAYS TIME FOR FUN Play helps children at Claire House to explore, have fun, imagine and express themselves.

“Playing is an essential part of childhood and so we couldn’t let it stop because of Covid-19,” says Lawren, Play Specialist.

Lola loved dressing up, painting pictures and having fun during her recent stay at the hospice.

Lola’s mum, Jodie, said: “Lola loves Claire House, we class them as our second family.

When she is at the hospice it is lovely to see Lola just being a little girl.

“Lola can have fun and it’s nice to be able to make memories and have a break from her appointments and operations.”

At Claire House our priority is to keep the children we care for safe, ensure they receive specialist care and to make sure they have lots of time to play.

Lola having fun

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OUR HOUSE news FESTIVE FUNDRAISING IN MEMORY OF LILLIAN Each year at Christmas, Water Babies Chester & Wirral run a fancy dress week to raise money for charity, with babies and parents encouraged to wear their outfits for a lesson filled with splashy festive cheer.

This year’s fundraising was in memory of Lillian Cracknell, who passed away at Claire House in November, aged 3. Both Lillian and her baby sister learned to swim with Water Babies, there was no doubt that they would choose to donate to Claire House in her honour.

Mum, Louise said: “Lillian always loved being in the water, so this is very special for us.”

The swimmers managed to raise an amazing £1,805 through their donations.

THE GREATEST GIFT YOU CAN GIVE IS TIME Whilst a lot of our Claire House volunteers have been keeping safe at home, there are some volunteer’s roles which are essential to the running of the hospice. These volunteers have continued to safely offer us their time and skills.

This includes our volunteer befrienders, who helped us to keep in touch with all of our volunteers throughout lockdown, offering a listening ear and a friendly chat.

Our volunteers who help out on reception and as hospice drivers, who help get the children to and from their homes, returned to offer their support when it was safe to do so.

Sue Hannah, who volunteers her time as a receptionist, also became a befriender, who gave other volunteers a call to check they were ok. She said: “A lot of the people I spoke to are quite elderly so were shielding

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and didn’t have any family or friends, so it felt very worthwhile. It meant I could speak to somebody else as well.“ “It was so rewarding, you could just tell the difference in their voices once you started chatting with them.”

BEE WORKERS FOR KEY WORKERS

THESE BOOTS WERE MADE FOR WALKING

Local environment group B 4 Biodiversity, set up the Bee Workers to Key Workers campaign to provide 2,000 hand and face balms for key workers in the Liverpool region during 2020.

Colin and Mark, who have supported Claire House through their workplace, Crown Commercial Services, took on the virtual challenge of walking the distance from John O’Groats to Land’s End.

The balms were made with local beeswax from hives in Liverpool, and were designed to help soften dry skin caused by continual use of PPE throughout the pandemic. As Claire House has remained open as a Covid safe environment throughout, our care team were in need of some pampering.

“Days were no longer spent just staring at a laptop screen. I was exercising again, eating healthier, sleeping better and my motivation and wellbeing improved almost immediately,” said Mark.

Team Co-Ordinator Isha said: “The staff really appreciate receiving any kind of gifts but this lovely lady really thought about how she can use her business to support care staff during a difficult time.

They smelled great and all staff were truly thankful for such a thoughtful gift.”

In total they walked for 630 hours, covered 1,748 miles, took 3,768,032 steps, burnt 74,800 calories and lost 60lbs during the 63-day challenge.

There were heaalth and wellbeing benefits, but their motivation for doing the walk was to support Claire House. In total they raised an amazing £4,320.

Mark said: “Every day, rain or shine, we walked for the incredibly brave children and their families who rely on Claire House for care and support.”

CHASING RAINBOWS Elizabeth, age 10, decided that she wanted to raise money for Claire House by setting herself a challenge of doing something she had never done before. She decided to run eight miles and set herself a fundraising target of £250.

much Claire House needs donations, especially in these difficult times, and I wanted to do my bit,” said Elizabeth.

“My family has always supported Claire House and we have friends who have been helped so much. I really wanted to do something for other people. I know how

Elizabeth completed her run along the Wirral coastline and was greeted by a beautiful rainbow.

She was blown away when she managed to raise an incredible £2,048 for the hospice.

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