Our House Autumn 2023

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OUR HOUSE

Editor: Jessica Arnell jessica.arnell@clairehouse.org.uk

Contributors: Hannah Shannon, Laura Kelly, Mark Pearson, Mark Hobley

Photography: Jump-Imaging C.I.C, Ric Rawlins

Design: coppermedia.co.uk

Claire House Children’s Hospice, Clatterbridge Road, Bebington, CH63 4JD 0151 343 0883 clairehouse.org.uk

Registered Charity no: 1004058 Company no: 02620240

Thank you to everyone who has contributed to this edition of Our House.

WELCOME TO OUR HOUSE

Hi everyone, We’d like to welcome you to the Autumn 2023 edition of Our House magazine.

INSIDE THIS ISSUE

4 RESTORING BALANCE AND PROVIDING CALM Hear from Complementary Therapists Kate and Jane, who provide moments of calm and relaxation for families the hospice cares for.

6 THE GREATEST SHOWMAN

Music Therapist Wendy and mum Vanessa, whose son Jamie loves music therapy, explain the difference it makes.

10 A TOWER OF LOVE AND STRENGTH

Bereaved mum Maria explains how Claire House helped her son Liam and their family at the most difficult time.

This issue, it’s our son Liam on the front cover. Claire House supported our family when Liam was diagnosed with an incurable brain tumour. The hospice team became a tower of strength for us all at the most difficult time and helped us to create so many memories together. There’s been lots going on at Claire House over the past few months and that’s all thanks to donations from people like you. Claire House couldn’t support families like ours without your help, so we would like to say a big thank you.

We hope you enjoy reading this issue of Our House. Love, Maria and Colin

14 BUILDING CONFIDENCE

Meet Dougy, who supports the young adults the hospice cares for, helping them to develop friendships, build confidence and provide support and reassurance.

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“PLEASE FUND THE CARE WE NEED, AND DESERVE”

Read how Liam, a young adult who comes to Claire House, took his concerns to MPs in Westminster when he heard that government funding for hospices across the UK was at risk.

20 OUR HOUSE NEWS

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

Restoring balance and providing calm

Hear from Kate and Jane who, as part of our Complementary Therapy team, provide moments of calm, comfort and relaxation for the children, young people and families the hospice cares for.

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“We aim to provide calm in a hectic world, and restore a sense of balance to the lives of those we care for at Claire House. Complementary therapies act as an additional method of support to the clinical care we provide,” said Jane

“There are a wide range of therapies that we offer to the children and young people who come to the hospice, as well as their family members. These therapies include therapeutic massage, reiki, aromatherapy and many more.”

Kate continues: “Our treatment plans are as individual as the person we are working with. We design them in a way that best supports the person both physically and emotionally.

“For example, some children we care for have difficulty breathing and blocked noses can cause additional discomfort or complications. Using reflexology we can apply pressure to certain reflex areas in the foot and all of a sudden their nose starts streaming and clears things up.”

The team also supports children and young people with anxiety, especially those who are older and more aware of their situation. “Guided meditation is something we often use for this. Each session provides relief as well as teaches them the skills to manage their anxiety,” explains Jane.

“The treatments we provide are also available to bereaved parents and parents of seriously ill children. These can be as simple as a massage to ease backache after leaning over a hospital bed for hours, or using reiki, guided meditation, or the opportunity for a calm chat to help them with anxiety during what is a very stressful time in their lives.”

“Jane’s holistic treatments felt like such a treat and chatting to her about how I was feeling was invaluable,” said Claire House mum, Emma.

Thanks to funding from the 64 Trust we have been able to create two additional therapy rooms at our Liverpool site that we like to call our ‘sanctuary’. Located just down the road from Alder Hey Children’s Hospital, these spaces are perfect for families to be able to relax in a more tranquil environment and have a break from the clinical setting of the hospital.

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“Our treatment plans are as individual as the person we are working with.”

The Greatest Showman

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Vanessa’s son Jamie loves music therapy. Here she, and our Music Therapist Wendy, explain the difference it makes.

“Music therapy for Jamie, especially when he’s not well, is amazing. It can help him feel better, make him feel safe and calm, create a memory for us or just make him happy,” explains Vanessa.

Vanessa’s son Jamie is 14 and has a rare genetic syndrome that means he is unable to walk, talk or feed himself. He relies on lots of medical technology to keep him well, such as a ventilator, and his mum provides around the clock care. The Claire House team have been supporting him at home, online or whilst he has been in hospital for two years.

“Jamie is a wonderful young man who likes what he likes, and he loves music. He’s non-verbal but really affectionate. He gives you a wink if he likes you, and if you’re really special he double winks.

“He likes listening to songs, playing instruments and singing. We listen to all kinds of music, from dance to Pavarotti and opera,” says Vanessa.

As well as getting support to manage his condition, Jamie has been doing music sessions with the hospice Music Therapist, Wendy.

Wendy uses music and sound to address children’s physical and psychological wellbeing. Nobody is ruled out, even a child with profound hearing loss can respond to feeling vibrations.

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Wendy explains: “My work is really important for the children and families who are going through huge challenges - music therapy gives them a way of expressing themselves.

“I work with a range of ages and abilities, from newborn babies to young adults. With one child I might use music to help their speech development or some area of movement, with another it might be helping to express how they are feeling.”

Vanessa says: “I’m so grateful that Jamie gets to do these sessions, because he and other children really need them. Wendy is amazing. You can be sitting in a hospital room feeling really miserable, then the music starts and it’s uplifting. It can change a child; it can change the whole atmosphere.

“Wendy pulls out all the stops in our sessions. She does turn-taking with Jamie, she copies him or we sing and Jamie loves listening. She has a range of instruments and lets him pick which one he wants.

“One time Jamie had an electric guitar, I had a ukulele and Wendy a guitar. We sang The Greatest Showman. It was absolutely like we were in the film. He might as well have had a tuxedo and a top hat.”

“Most children like music, so if you’re trying to get them to do something, or stop doing something, music can help with that, it engages naturally,” explains Wendy.

“I’m a classically trained violinist, I play piano and I’ve taught myself guitar. At the hospice I use lots of percussion instruments, bell shakers and castanets, big drums, melodic hand bells, harps, and a piano. We also use technology, such as iPads with music-based apps.

“When I work with a child who is nonverbal, like Jamie, they might know lots of songs even though they can’t speak. They hear something and can start making noise with an instrument, or it might be that songs aren’t that meaningful but I can find sounds that amuse them.

“In other sessions, I encourage mums to sing to their babies. There is lots of evidence that this forms bonds, helps with development, communication and movement.

“even a child with profound hearing loss can respond to feeling vibrations.”
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“Young people may not want to use words to talk about things that are painful or frightening, and music can be a way around that. I work with young people who want to create their own music or share songs that are important to them. They let you into their world by listening to music with you.

“I’ve done sessions with families when their child is coming to the end of their life. This might be one of the last

positive memories they are left with. I’ve even worked with families once their child has passed away and played to them whilst they have been resting in our Butterfly Suite.

“There is a magic about music. It’s a way of having a shared experience. It’s good for your mood and health. Thanks to everyone who helps make these sessions happen.”

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A tower of love and strength

When Maria’s son Liam was diagnosed with an incurable brain tumour, the hospice team became a tower of strength for them both. Maria explains how Claire House supported them at the most difficult time.

“Liam loved everyone around him. We’re a big family and Liam was one of the youngest for a long time, but he was always making sure everyone else was okay, worrying about them and bossing them around.

“He was lively, went on holidays with his friends, went to football matches and spent loads of time with his brothers and sisters,” said Maria.

At 21-years-old, Liam was diagnosed with an incurable brain tumour. The hospital suggested that Liam and his family meet with Claire House Children’s Hospice who would be able to support them.

“I always thought Claire House was for younger children and I questioned how they would create a relationship with a 21-year-old, but I knew we wouldn’t know until we visited. It was a struggle at first to convince Liam, it took a lot of persuasion, but we eventually arranged a visit.

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“I’m really glad we did because we were very lucky to have met Lou,” said Maria.

Lou is a Palliative Care Nurse Specialist who supports teenagers and young adults like Liam. She helps the patients she supports focus on the things they want to achieve whilst they are well, but also consider what would be important for them if things change, treatment options fail or there are no more treatment options left.

“Liam was always thinking about everyone else. He didn’t want to talk about his diagnosis or what might happen as he was always scared he could upset us. Lou gave him the strength to talk about things that no one wants to talk about,” said Maria.

“The love that Liam had for his family was clear from the moment I met him,” explains Lou.

“We would talk through lots of different things and he would say ‘I want to protect my mum, I want to make sure she is going to be okay when I’m not here’.

“He was a planner, but it was easier for us to make plans earlier on whilst he was still feeling well and they still seemed a way away.

“He planned his funeral and we put a care plan in place for when he did become unwell. That way he could tell us what he did and didn’t want before the time came. Then we helped him live as well as he could, for as long for as he could.” explains Lou.

“When Liam got sick he really wanted a dog and so we got Buster,” said Maria.

“Buster was his best friend, he’d sleep by his bed and go everywhere with him, even to see Lou at Claire House.”

“Liam’s diagnosis caused him fear and anxiety. I’d see him every week or two, sometimes we’d just meet for a coffee or go for a walk, play FIFA and have a bit of fun. Other times we would have some really difficult conversations that would make him sad, but Buster would always be there to lift his mood,” explains Lou.

“Liam wanted to live a normal life as best he could and he didn’t like to talk about his illness much with me, his family or friends. Lou was someone for him to talk to,” said Maria.

“Claire House not only supported Liam, they were there for our whole family. They helped us to create so many special memories.

“They arranged a 22nd birthday party at Claire House Liverpool. The whole family came including Buster, there was cake

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Liam and his brother

and music, we made handprint paintings and they arranged for a photographer to capture every moment.

“They supported me too, I would see Kate for complementary therapies. She’d help me to relax with different treatments and afterwards it would make me feel like I could go out and face the world again.

“Claire House was our tower of strength. Liam had never been sick in his life, so to have to then deal with all the medications and the trips to the hospital was hard. If we were ever unsure on medications, I could pick up the phone and Claire House would be there to explain and reassure me,” explains Maria.

Fourteen months after his diagnosis, Liam deteriorated quickly. He died peacefully at home in December 2021 with all of his family around him.

“It’s coming up to 20 months since Liam died and it still feels like yesterday, but I know we’ve got Claire House to support us. When you lose a child, you feel like you’re part of a club that no one ever wants to be in, but having the hospice makes me feel like I’m not alone.”

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“Claire House not only supported Liam, they were there for our whole family. ”

Building confidEnce

Meet Dougy, Young Adult Practitioner, who supports the young adults

“I recently joined Claire House, working in the Young Adults team to help run the social groups, support young people and their families and help with the transition to adult services.

“The social groups are a safe space for young adults to develop friendships, have a laugh with each other, and empower them to take control of their Claire House experience.

“It has been incredible to get to know the young people and build relationships with them. We have had pizza parties, FIFA tournaments, social weekends and we have even booked our first social group holiday to the Lake District.

“In the time I’ve been at the hospice I’ve really enjoyed learning what the young adults get from Claire House. They get to know others who have the same condition as themselves and can learn from each other about how they manage certain parts of their condition, they’ve built such great friendships and support one another.

“One thing that has stood out for me is hearing how much Claire House has built

the group’s confidence, providing more social opportunities and supporting them to do activities that they might not get the chance to do otherwise.”

Jordan, who attends the social group, explains: “The social group has helped me socialise with lads with the same condition. Learning from them about what they have been through and what helps them has helped me a lot with my confidence. I enjoy getting together each month with the lads because we play games, quizzes and do lots of other fun activities.”

Dougy continues: “The world can be a daunting place for any teenager, and when you have a life limiting condition it can be especially intimidating. It’s great to be part of a team that provides young adults with the opportunities to enjoy social activities and gain support and reassurance, both from others similar to themselves and from experienced staff.

“With Claire House, the young adults have been able to build a positive support network whilst having a good time and doing some amazing things together.”

the hospice cares for in helping them to develop friendships, build confidence and provide support and reassurance.
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“Please fund the care we need, and deserve”

When Liam, a young adult who comes to Claire House, heard that government funding for hospices across the UK was at risk, he took his concerns to Westminster.

“It was fascinating going to Parliament, it was full of busy people who run the country! Also, being in one of the rooms where they have debates and inquiries which you see on the news was so surreal,” says nineteen-year-old Liam.

“I wanted to speak to a Minister and MPs and tell them why Claire House means so much to me. It’s been a constant for over half my life and it’s so important that their services, and those at children’s hospices across the country, are protected.”

Liam lives with Duchenne Muscular Dystrophy, a muscle-wasting disease, and uses a wheelchair to get around. He has been supported by Claire House for 11 years.

He recently joined our Chief Executive David Pastor, and Together for Short Lives, who represent children’s hospices around the UK, at a lobby day in Westminster. The aim was to explain to MPs why government funding for hospices is so important.

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The hospice grant Claire House receives pays for a fifth of our care costs, with the rest being funded by our generous community who fundraise and donate.

“Things like hydrotherapy, respite and counselling aren’t easily or quickly accessible via the NHS, and if they take those away it will end up costing the NHS more money, take up bed spaces and make waiting lists even longer. They are so vital to so many people like me and without them we would really struggle.

“I was around eight when I was referred to Claire House. I remember when we first got there and were given a tour - my first thought was ‘wow’. There was just so much there to do, and seeing the hydrotherapy pool was really cool.”

Liam was first referred for hydrotherapy –a type of physical therapy in water, which for wheelchair-user Liam was a huge help.

“I went once a week, and I think it has been one of the biggest helps with my symptoms. It’s such good exercise and is the one place I can walk. I absolutely loved it and have started it again recently.”

Alongside hydrotherapy Liam began to use other services that the hospice offers, like respite breaks for him and his family, and counselling.

“Caring for a child with disabilities is nonstop for a parent. I know my mum worries and that it can be a lot. Going for short breaks at Claire House meant that she could relax, knowing I was safe and someone she trusted was looking after me medically.

“Claire House also has parent support groups so they can meet people who know what it’s like, counselling for the whole family, and siblings’ days out which have been a massive help.”

As Liam got older, he began to feel that there weren’t a lot of young people similar to him that he could connect with while visiting the hospice. This was noticed by Andy and Alex, who work with young adults like Liam at Claire House. They spoke to Liam and - most importantly –listened. And so, the young adult social group was born - something that has transformed Liam’s life.

“It was in 2019 that our social group first met. There are now more than 20 of us, young people like me who have fulfilling lives to lead but just needed that little bit of a boost and encouragement to do so. We meet once a month at Claire House, and we have days out together.

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“One of my favourite memories was the 24-hour game-a-thon we did together to raise money for Claire House. We played board games and video games and held a FIFA tournament, which ended up feeling just like a football match with all the teams and cheering going on!

“The social group has given me so much confidence in meeting new people, making friends and trying new things. It played a massive part in me feeling comfortable enough to go to university and move out from home.”

So, when Claire House asked Liam to go down to London for the lobby day, he was happy to help out. “A Lord came in

to chair the meeting, many of our local MPs turned up to support us and help get our point across to the Government. NHS England was there too, and the Minister for Health and Social Care.

“I sat between a Lord and a Minister. It was so surreal but the debate was fantastic, our local MPs were giving the Government very difficult questions and it turned into a fierce debate.

“We also went to Parliament Square to hold up some protest signs. The weather was amazing too, very sunny. It was really fun because people were looking and reading our signs, and there was another protest with music so I was dancing.

“I hope the day made a difference. But please, join me in calling on the Government to fund the care we not only need, but deserve.”

To find out more about the campaign to protect children’s hospice funding visit: togetherforshortlives.org.uk

“I sat between a Lord and a Minister. It was so surreal but the debate was fantastiC. ”
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CLAIRE HOUSE NEWS

Running for Aubrey

Dad Jason ran six marathons across six days to honour his son Aubrey’s first birthday and the six days that he and wife Katie got to spend with him, raising £10,000 for Claire House in Aubrey’s memory.

Jason said: “We were over the moon to be pregnant with our first child, but everything changed at the 12-week scan. We were told that Aubrey was very poorly.

Seb’s Super Steps

Nine-year-old Seb walked 10 miles from Lymm to Emirates Old Trafford this summer, raising over £3,000 in memory of his older brother Josh.

The cricket-mad lad finished his walk at the cricket stadium, where he then watched his beloved Lancashire Lightning beat Durham Cricket.

“The support from Claire House was invaluable and still remains a constant in our lives.

“Aubrey was born extremely prematurely on 30th April last year and passed away on 5th May. I wanted to raise money to say thank you to Claire House, and running a marathon every day for six days felt like an incredible challenge.”

Josh was diagnosed with a rare condition called FOXG1 Syndrome, and Claire House provided invaluable respite support throughout his life.

Seb says: “Last year Josh passed away when he was only 12. He was my best friend and I miss him so much. I was able to spend time with him at Claire House in their Butterfly Suite; this meant that I could say goodbye to him and be supported by their team.”

Seb was joined by his family on the walk and mum Kate said: “Josh couldn’t speak but he had a huge smile on his face whenever Seb was with him. We’re so proud of Seb for how he has dealt with the loss of his brother and for his fundraising.”

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Claire Bear 3k

In June, Claire House held the first ever Claire Bear 3K in Birkenhead Park. Over 300 people took part, raising £17,000 for the hospice. Event Fundraiser Mark Pearson said: “Children love to fundraise for Claire House and support other local children, so we wanted to put on a community fun run especially for little legs. Lots of children took part, ran or walked the 3K route and raised a huge amount for the hospice.”

Claire Bear attended on the day too, handing out medals and high-fives on the finish line and posing for photos. She was over the moon with how much was raised!

Tee-rific fundraising

This summer, M&S Bank held their annual golf day supporting Claire House with 12 different teams taking part on the day, including some the dads the hospice supports. The event raised over £25,000 for the hospice.

“The team at M&S Bank have once again outdone themselves this year. Their team organised another incredible day of golf for businesses around the UK, along with Claire House staff and families,” said Harry Boshell, Partnerships Manager at Claire House.

Music Magic

This summer, Claire House was the Charity Partner of the Wirral Chamber Music Festival, which brings classical music into the Wirral Community. The festival was founded by two members of the Royal Liverpool Philharmonic Orchestra, Thelma Handy and Alex Holladay, and several events were held in churches, galleries and village halls over the first weekend in July.

Thelma Handy said: “The festival’s aim is simply to

“Thank you to all of the businesses that took part, and to all the staff and volunteers from M&S Bank who made the amazing day possible.”

promote the enjoyment of classical music by making it exciting and accessible for the local community. We were delighted to support Claire House, which is a lifeline to so many local children and families.”

In June, a quartet from the Wirral Chamber Music Festival performed at our Liverpool site for some of the families that we support, who all had a wonderful evening.

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hour 1 You can get so much out of volunteering Each hour makes a difference… for your local children’s hospice Volunteer Registered Charity No. 1004058 • To seriously ill children and their families • To Claire House Children’s Hospice • To you SIGN UP NOW 0151 343 0883 Clairehouse.org.uk/volunteer
1 IN 5 CHILDREN WE CARE FOR IS FUNDED BY GIFTS IN WILLS Erin, Children’s Nurse. Registered Charity No. 1004058 “Make sure we are always here for seriously and terminally ill children by including a gift in your Will.” Find out how you can make a difference by calling 0151 343 0883 or by visiting clairehouse.org.uk/wills.

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