Our House magazine Autumn 2020

our house

CLAIRE HOUSE AUTUMN MAGAZINE 2020

Extraordinary times call for extraordinary people Your support has meant nurses like Lou have been there when families needed help most.

WELCOME TO OUR HOUSE Hi everyone! My name is Lou, I’m a Specialist Nurse at Claire House Children’s Hospice and I’d like to welcome you to the Autumn 2020 edition of Our House Magazine.

It’s been an extraordinary time and thanks to extraordinary people like you, Claire House has been there for families going through the toughest of times.

In this issue, you can read how the work you support has continued throughout the pandemic, you’ll meet Charlie and Jess and see how - in the face of adversity - our local community has taken part in some fantastic fundraising activities.

I hope you enjoy reading this issue of Our House and hearing all about what’s been happening at the hospice.

Love,

Lou

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 Photography: Jump Imaging C.I.C, National Lottery, Canvas Life Online 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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GETTING HELP TO THOSE WHO NEED IT

The vital work you support has continued, meaning that throughout the pandemic children and families are getting the care they desperately need.

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STRUGGLING TO COPE

Meet Charlie and his family. Lockdown has been tough for them, it left them feeling exhausted and needing a break from the pressures of round-the-clock care. Read how you helped them to cope.

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A DAY IN THE LIFE OF CLAIRE HOUSE NURSE, LOU

Learn how Palliative Care Nurse Specialist Nurse, Lou, has been there for families throughout the pandemic.

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HERE’S TO THE MEMORIES

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THANK YOU MINI HEROES

There’ve been so many of you fundraising for us when we needed you most. See some of the great things our mini heroes have been doing for Claire House.

Your support meant Jess and her family didn’t have to stay in hospital. Read how they were able to come to Claire House for the care and support they needed.

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OUR HOUSE NEWS

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

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Claire House Nurses Lou, Jenni and Lesley (left to right)

GETTING HELP TO THOSE WHO NEED IT 4

Over the last few months, the families of seriously ill children have been under great pressure. So, whilst the work you support has become much more difficult, it is more vital than ever before. Read how we’ve continued to provide services...

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IN THE HOSPICE With many families unable to come into the hospice, the past six months have been very different, despite this we’ve continued to provide families with the best care possible.

Many of our groups have become virtual, and PPE has become the new norm.

families with funeral arrangements has been exceptionally challenging and our bereavement team have been helping families to ensure their child’s legacy lives on despite restrictions.

RETAIL

We’ve continued to provide end of life care, symptom management and emergency care, and although there are restrictions, the team are still able to bring play, activities, fun and smiles to the children.

Since July we have also been able to offer a limited planned respite service, that gives families who are exhausted from caring for their children whilst shielding, a much-needed break.

We are slowly getting back to some normality whilst keeping the children, families and staff safe at all times.

Throughout the pandemic, 77% of our care has been emergency respite, symptom management and end of life care.

CARE IN THE COMMUNITY Throughout the pandemic, end of life care has been a top priority. We only have one chance to get a child’s end of life experience right and Covid-19 has made this even more difficult.

Our dedicated specialist nurses have really stepped up to these challenges, continually striving to offer the very best of care via video consultations or face to face using PPE. Memory making for families during these times has been even more precious. Supporting

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Sara - Donation Centre Manager

Now most of our shops have reopened, our retail team are once again raising vital funds for the hospice.

To ensure health & safety, all donations are quarantined for 72 hours. The team are wearing PPE and working in smaller teams to accommodate social distance.

So far we have seen positive sales and donations coming in thick and fast. It’s also been great to welcome back customers with the support of the volunteers who have been able to return.

FUNDRAISING

Rachel - Events Fundraiser

Fundraising is a corona-coaster ride right now (our new favourite word). Events are still being

Our voluntary income has taken a significant hit and is down by 40%.

cancelled, businesses are suffering and we can’t get together with the people who fundraise for us.

On a positive note though, we are humbled by the support of those who continue to be there for us, whether through our lottery, a regular gift, doing a virtual challenge or by sending a donation. These are testing times and simply saying ‘thank you’ doesn’t feel enough but we are incredibly grateful to every one of you.

COUNSELLING With families feeling under great stress, our counselling services have been in demand now, more than ever. In week one of lockdown, our one-to-one and group counselling service went online. We introduced a support line manned by a counsellor and published weekly mental health articles for families.

The future sees us offering greater diversity for accessing counselling including; face to face, webcam, audio, email and instant message.

Your support has meant we’ve provided 153 virtual counselling sessions.

Specialists have still offered some play sessions in the hospice for the sickest children, for those who cannot make it, the Play team have been showcasing their skills in videos.

Our Complementary Therapists have been helping families to cope with really difficult situations, through stress-busting aromatherapy blends, distant Reiki and Zoom sessions.

Physio and Occupational Therapies have been working with the sickest children to help manage difficult symptoms through information, support and consultations & treatments through video and remote platforms.

As restrictions ease, our therapists will be working with more families at home and in the hospice, focusing on those most in need.

VOLUNTEERING

Amy - Volunteer Manager

Claire House couldn’t run without volunteers, but during lockdown, they were no longer able to help out. We’ve found fun ways to keep in touch with all 1,000 of our volunteers, from holding a virtual afternoon tea to doorstop photoshoots. We have even created new roles to enable volunteers to continue helping from the safety of their home.

THERAPIES When children are feeling isolated and missing their friends, giving them a chance to have fun can make a massive difference. Whilst our Play

With restrictions easing, we look forward to welcoming back the people who are so vital to the running of the charity.

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Charlie and mum Shirley

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Struggling to cope During lockdown Shirley and Lee’s son Charlie came in for an emergency stay at the hospice as they were exhausted and desperately needed a break.

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“Everyone knows Charlie,” says mum Shirley, “he’s loud and happy with an amazing smile, but in lockdown he’s just not been his chirpy self. We’ve been isolating since late March and literally haven’t left the house. We didn’t think it would affect him, but he’s been quite sad.

“It’s like Groundhog Day, every day is the same.

Charlie was used to having so much going on but he’s not been out of the house, seen his grandparents, friends or been to school. The most he’s ventured out is to go down the path and he’s getting bored of that.”

Ten-year-old Charlie suffers from a series of complex medical conditions. At the age of four months old, he was diagnosed with a rare brain disorder called Lissencephaly that affects his feeding and swallowing. “He can’t walk or talk, and he can’t use his hands or sit up,” says Shirley.

“Everything you or I take for granted or do on a daily basis, Charlie can’t do. In developmental terms, he’s the equivalent of a six-month-old.”

Charlie also has epilepsy, can go without sleep for several days and is particularly vulnerable to infections. He requires roundthe-clock care from his parents, who are often exhausted as a result.

“It was really hard at first, knowing that all the support you’d had before was gone. It’s like your routine is set in stone and you’re the physio, teacher, nurse, doctor. When he’s got problems with his bowels he can scream and cry for three days constantly,” says dad Lee. “Our days are long and tiring. He’s not a settled sleeper, he wakes at least two times during the night, then wakes early, has his meds and a bottle, then sleeps for an hour, then physio, lunch and a walk on the path. I think I’ve done at least five marathons on that path now.

“When someone from Claire House rang to see how we were, we said we were exhausted and we were told we could have some emergency care. We got two nights – the first break we’d had in four months.

“The weather was lovely so we had a BBQ, we couldn’t have one with him, as he doesn’t like just sitting there, he wants to be on the move.

It was lovely to do nothing, knowing Charlie was being well-looked after in Claire House.”

Whilst it has been very exhausting, Shirley and Lee are grateful that Charlie has stayed reasonably well and infection free.

“It was a little holiday for Charlie, and a much-needed break for us.

He was made up seeing some different faces, as he’s only had our four walls to look at.”

“We are really lucky his chest has been OK and things have got better in the last couple of weeks,” adds Shirley. “Both sets of grandparents were desperate to see him.

They usually looked after him a few times a week and they miss him loads and miss being able to help out. Finally, they have been able to come visit us at the end of the path. It’s really perked Charlie up.

“We would like things to get back to the way they were before, but we don’t know when that will be.”

Charlie’s visiting Claire House next month for a planned break. “It’s great to have something to look forward to,” says Shirley, “It’s been a long slog.”

During the pandemic, Claire House was only able to provide end of life and emergency respite care. In July we were once again able to provide planned short breaks to families like the McIntyre’s, many of whom were at breaking point after months of caring for a seriously ill child alone.

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A day in the life of Claire House nurse, Lou Meet Louise Smith, a Palliative Care Nurse Specialist at Claire House, who has been supporting families throughout the pandemic.

Here, Lou shares a poem she wrote and how, thanks to you and your support, she’s been able to continue to be there for children and their families through the toughest of times.

“Luckily, the pandemic hasn’t affected me greatly on a personal level. My family have all remained safe and well.

“Professionally it has had a huge impact on me. For families we know well and support regularly, this has meant minimal home visits as they are shielding, and lots of video calls.

“If we do carry out home visits, then we need to wear PPE, which isn’t always easy.

“It can be so much tougher to build relationships with a mask on.

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“When delivering end of life care it is such a poignant time, trying to support and comfort patients and families whilst wearing aprons and masks is far from ideal. And the comfort of a hug cannot be overestimated.

“I always knew I was a tactile person, but I have realised how much empathy is shown with touch.”

During the pandemic, Lou and her colleagues provided end of life care to children and their families, thanks to your donations their vital work will continue over the coming months.

My heart aches a little right now, I said goodbye to you today, I hid my tears behind my smile, As I turned and walked away.

I’ve cared for you for many months, I’ve listened to your fears, I’ve helped you create some memories, And wiped away your tears.

We talked about what you wanted, And the importance of getting you home, I’m proud I helped you achieve this, You didn’t want to feel alone.

I knew I couldn’t change the outcome, Knew I couldn’t keep you here, But it’s always sad when a life ends, We always shed a tear.

Babe, you’re not my first patient, And sadly you won’t be my last, But you’ve touched my heart in many ways, And I thank you for that fact.

I admire you for the courage you’ve shown, And thank you for the lessons you’ve taught, This job is tough at the best of times, But I’ve learnt from the battle you fought.

I hope you find some peace and joy, I hope you find some love, You’ll inspire me caring for future teens, I hope you watch me from above.

So it’s time to turn the tears off, It’s time for me to be strong again, There’s lots of other families in need, And I need to help ease their pain.

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Here’s to the memories

Jess was in a lot of pain during lockdown - a trip to Claire House helped her family manage her symptoms so they could make the most of their time together, despite the difficult circumstances.

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“The last few months have been long, hard, isolating and tiring and at times we’ve felt abandoned. Claire House has been the number one support for us, without a shadow of a doubt,” says mum Alison.

Alison’s daughter Jessica has a unique, chromosome abnormality and was diagnosed with Beckwith-Wiedemann syndrome when she was eight months old. Now 14, she has undergone more than 50 procedures including two major bowel operations, and her health remains unstable.

After a stay in hospital during lockdown, Jess came and stayed at Claire House, so the nurses could help relieve her pain and manage her symptoms.

“She’s been into hospital three times,” says mum. “The third time was when they admitted her for a new medication line and she had to go into surgery.”

When Jess came out of hospital Claire House suggested a stay in the hospice to do symptom management and investigate better ways for her to receive medication.

“At the hospice they really went above and beyond for Jess. They knew she’d struggle with PPE, she really hates it and rips it off. So, they had some fully unicorn-ed gowns and visors with Disney characters on. Jess is now a bit more accepting of things.”

Now out of hospital, Jess has adapted to her new routine with the family shielding. “At the start Jess was banging on the front door, knocking and knocking because she wanted to go out. Normally I’d come home, and we’d go out for a little walk. We’d go feed the ducks.

She just couldn’t cope with that not happening.

That really stressed her out.

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Jess baking with sister Olivia

“Now I think Jess has forgotten about the outside world. She’s adapted to things like Zoom. She hasn’t got good eyesight, so she holds the iPad really close and just tap, tap, taps all the time,” says Alison.

One thing Jess really enjoys is her online sessions with the hospice’s music therapist, Wendy. “For the first few times she found it hard to concentrate and I thought it wouldn’t work. Now it’s incredible – she sits in bed, gets the music box out and she is ready. Her favourite song is ‘Miss Polly had a Dolly’. I’ve sung it 60 million times.”

Wendy has sent Jess six songs and she can now choose the one she wants to play. “It’s taken weeks and weeks to build this up, but it is really good. She is in control and can choose the songs and the instruments. It’s great to do this over the internet, you’ve just got to adapt everything,” says Alison.

Jess has also taken part in sensory story sessions run by Claire House. “They have been brilliant; she had a Teddy Bear’s picnic last week. I have stepped back and used the time that she is being entertained to go do something else.”

Alison and her husband Mark also have two other children, Olivia, aged 15, who has been worried about her GCSEs and Joseph, aged 11.

Whilst the family have had hard times, there have been good ones too. “We’ve done loads of art, done bingo on Zoom and had a weekly quiz. Jess is hilarious. For someone who can’t speak she is just so funny.

“I don’t think we’d have got here without Claire House. It would have been a million times harder than it has been.”

“During lockdown my mum was diagnosed with dementia, so memories are even more important to us. I’d like her to have time with Jess whilst she remembers it.

“We could have ten years with Jess, but we have to be really realistic and think we might not. So, what do we do? Make those memories or keep hidden away? We will always be about staying safe but making good memories, that is us.”

CLAIRE HOUSE NURSE, CLAIRE DOIG Jess is a fabulous young lady with many clinical needs. Usually she comes to the hospice for a holiday but recently she hasn’t been too well and is suffering with pain. I am a Palliative Care Nurse Specialist and have spent time with Jess and her family to introduce ways to relieve her pain, which ended in a ‘symptom management stay’ at Claire House.

Jess was started on a new medicine and by having a stay in the hospice for the effects to be reviewed, this meant that it saved Jess a stay in hospital. Jess loves coming to the hospice, but it also gave mum, Alison, support with Jess’s increasing clinical needs and a chance for someone else to be nurse!

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Thank you mini heroes

You’ve faced unprecedented times and things have been very different, but you helped when we needed you most. Thank you for pulling together, coming up with new ideas and supporting local children and their families. You truly are Claire House heroes.

JUMBLE ALL THE WAY Showing off his initiative, George decided to organise and hold his own jumble sale outside his house. George was out on his stall every day for a week, helped by his cousin Roman who was a brilliant assistant.

His jumble sale was such a great success that George managed to raise £110 for Claire House.

SQUEAKY CLEAN Chrisell has set up a volunteer community project called ‘Brushing Beautiful’ where she cleans dirty road signs and reports broken signs so they can be fixed.

On her rounds, she cleaned the Claire House sign near the hospice and it is sparkling clean! Now, visitors and families can see it nice and clearly from the road. Thank you Chrisell.

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TAKING ON A CHALLENGE FOR JAMES Wishing to give back to the charity that helped to look after their cousin, James, sisters Libby and Emily, took on the 2.6 challenge.

They completed a 2.6km walk around Bebington and had initially given themselves a target of £26. They managed to raise an amazing £360 for Claire House.

Speaking about their fundraising, the sisters’ mum said: “We know how important Claire House was to James and the family. The love and care shown to James in his short life was exceptional.”

A REAL TEAM EFFORT Junior football club, Glenavon JFC, took on the challenge of running the equivalent distance from the Glen to Wembley and back – 708km in just one weekend.

Thirty-five teams took part (with the youngest just six years old), running over 1,200km!

Not only did they nearly double the distance of their runs, they also nearly tripled their fundraising target to raise funds for Claire House, Wirral Hospice and the Paul Lavelle Foundation.

STEPPING UP FOR CLAIRE HOUSE Earlier this year, we held the Step Up virtual challenge, encouraging people to either walk or climb the equivalent steps of the Three Peaks.

Kadey completed the challenge by going up and down her stairs and raised a fantastic £356 for Claire House.

Speaking about her challenge, Kadey said: “I thought, I have the luxury of being able to walk up the stairs which some do not. So I wanted to do my bit to raise some money for them.”

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OUR HOUSE news GOING THE EXTRA MILE The crew of the HMS Astute Royal Navy submarine raised £4,120 for the hospice, when they covered the distance from their base in Scotland to Claire House.

They had hoped to cover 560 miles, by cycling, running and walking. In total they covered 2,163 miles, with one crew member cycling 250 miles in a single day.

“All the team at Claire House are bowled over by the total raised by HMS Astute for their 560 mile challenge! To take on such a distance is no mean feat, and to raise £4,120 is just incredible,” said Community Fundraiser, Loren Miller.

ON TOP OF THE WORLD FOR CLAIRE HOUSE In March, just as the UK was preparing for lockdown, Lucy Brady was trekking to Everest Base Camp in aid of Claire House.

Over the last six years, Lucy has climbed the Grand Canyon, jumped out of planes and completed the Inca Trail to support her local children’s hospice.

DONATIONS OF PPE Throughout the pandemic, Claire House has been very fortunate to receive a number of donations of PPE so that our teams can continue to support local children and families.

We are so grateful to every individual and business who has kindly donated to us throughout this period, especially when there were times the charity was struggling to get hold of supplies.

From masks, overshoes and hair coverings, to aprons, gloves and over sleeves, a fit testing kit and the most amazing child friendly gowns, these generous contributions have helped the hospice to continue providing critical care for children both in the hospice and at home.

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Lucy and her company High Performance Consultancy have adopted Claire House as their charity and have raised over £38,000.

“Lucy’s incredible fundraising makes such a huge difference.

It’s thanks to Lucy and people like her that we can continue be there for families in these extraordinary times,” said, Mark Pearson, Fundraising Events Manager.

BURNING BRIGHT FOR CLAIRE HOUSE

COURTNEY’S BIG BASH

Ashleigh at EvieWick Candles has been fundraising this year in memory of her 14 year old sister Evie, who was cared for by the hospice, and sadly passed away in December from a DIPG Brain Tumour.

Eighteen-year-old, Courtney, who is supported by Claire House, hosted a weekend jam packed with over 40 local acts performing live on Facebook.

She’s created candles inspired by Evie’s favourite things, from Halloween to afternoon tea.

Courtney loves performing and wanted to help entertain everyone during lockdown, whilst raising funds for the hospice.

Ashleigh exceeded her 2020 fundraising target and has raised a fantastic £3,798 to go towards end of life ‘Butterfly’ support at Claire House.

“Thank you so much to everyone who has bought a candle and raised funds in memory of our beautiful Evie, you’ve helped us to reach our target for the year and support a charity close to our hearts,” said Ashleigh.

EvieWick Candles will be back later this year with a Christmas inspired candle.

IT WAS A WILD NIGHT OUT! Back in March, just before the Coronavirus pandemic hit the UK, Jackie and Ian Wild and their son Finley welcomed more than 450 guests to a Wild Night Out at Thornton Hall Hotel in memory of their son Elliot’s 18th birthday.

Elliot was cared for by Claire House, and passed away aged nine in 2011.

So far Elliot’s family have raised an incredible £374,000 with the Claire House Cup, an annual football tournament usually held in June, which celebrates Elliot’s passion for football.

With the help of her dad, a local performer known as James Franklyn, Courtney organised a virtual event, which reached over 13,000 people.

Their initial target was £200 but they went onto raise a phenomenal £22,000.

“Courtney absolutely loves Claire House; they have always been there for us. We would have been happy to raise £200, but we are thrilled with £22,000,” said James. “People have said it was the highlight of lockdown for them.”

Courtney has been nominated for a Pride of Britain Award for her fantastic fundraising; everyone at Claire House is wishing her the best of luck.

This year the family decided to do something different and threw a Wild Night Out, raising more than £37,000 for Claire House and smashing their target of £18,000 for Elliot’s 18th.

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thank you

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