Shine Winter 2019 magazine

New superb sensory walkway Our volunteer survey results Ted and Dylan-James’ stories

Therapies Families share the importance of this vital service Shine Winter 2019 Welcome to Shine A message from Highlights inside

Our welcome for this edition of Shine is from News Kim, one of our incredible volunteers. She 3 New sensory walkway has volunteered for Shooting Star Children’s 4 George’s Dragons year Hospices for three years. of fundraising 10 Volunteer survey results “I saw an advert for an Open Day at Shooting Star House in Hampton whilst I was unable to Family stories work and went along to find out more about my local children’s hospice. It was incredible 6 Ted’s story to see first-hand the work that went on inside, 12 Dylan-James’ story so I decided to sign up as a volunteer. I mostly volunteer on reception at the charity’s office in Weybridge, covering various reception shifts each week. Feature I’m also a Legacy Ambassador, which involves talking to potential supporters 8 Supporting families about leaving a gift in their will – many people don’t realise that leaving a with therapies legacy to a charity is actually quite simple so I enjoy telling supporters about the process and the difference it makes. Your Shooting Star Children’s Hospices “It’s always a pleasure to read the family stories in Shine and the stories in 11 A day in the life of a... this edition are no different – they really bring home just how vital Shooting Hospice at Home Nurse Star Children’s Hospices is. I hope you enjoy reading them as much as I did.” 14 A look inside... Woodlarks 15 Fabulous fundraisers/ Kim Over to you

Care we have provided in the 687 61 last six months Families New families supported 66 same period previous year Figures cover February 2019 688 same period previous year to July 2019. 4,216 1,496 Hours of Hospice Bednights at Home visits 1,728 same period previous year 3,768 same period previous year 2 Sensing a new wonderful walkway The garden of our Guildford hospice, Christopher’s, has welcomed an amazing new sensory walkway for families to experience and enjoy. This has been made possible thanks to the generosity of Hindhead Golf Club, who have chosen us as their charity of the year, and Timotay Playscapes who supplied and fitted it.

The walkway has been created to be a Hindhead Ladies Captain, Erica Pickard, bright, vibrant and interactive sensory said, “When Harvie, my fellow Captain, and I outdoor experience. It incorporates a visited Christopher’s, we were overwhelmed range of different textures, colours, sounds by the warmth and total dedication of the and shapes to provide a stimulating staff and the high level of care they provide environment, supporting non-verbal to the children and to their families. It is communication. our hope the sensory walkway will provide families with an experience they can really enjoy together – a colourful, bright and vibrant space, with a range of sensory features around the wheelchair accessible path that will relax, sooth and stimulate.”

To donate go to shootingstar.org.uk/donate or call 01932 823100 3 News George’s Dragons roarsome year of fundraising George’s Dragons fantastic year of fundraising began on St George’s Day and will continue all the way to 20th March 2020 – ten years to the day that George and his family’s lives changed for ever.

Up until the age of 7, George was living like any other healthy child, until one morning in 2010 when mum Nicky and dad Phil found their son lying in bed awake, but unable to move or talk.

Now at 17 years old, George’s condition still remains undiagnosed, quiz nights and a special car treasure with no prognosis, nine years on hunt – all culminating in a grand gala from his first seizure. The family have next year to thank those who have been supported by Shooting Star supported them. Children’s Hospices for seven years with services including short breaks, “Our campaign is about putting Hospice at Home, therapies and Shooting Star Children’s Hospices special experiences for all the family at the forefront of people’s minds to enjoy and create memories. and ensuring they get the funding they desperately need,” says Nicky. “We know that any seizure could take him from us and he is reliant on his “Whatever the future holds for medication to manage his condition, us, dealing with the impact of not treat it,” says Nicky. “We want George’s condition is made bearable to thank an amazing charity who because of Shooting Star Children’s has kept us going in the most Hospices and we simply couldn’t difficult of times. Shooting Star donning her trainers and focusing on function without them. They are the Children’s Hospices has provided some epic running challenges, with greatest support network to anyone respite for George and support for the hope of covering an astounding in our position.” all of the family, keeping us calm 118,000 metres by the end of the and as sane as possible throughout fundraising year. Find out more about George, the years. So we have decided to run his family and how you can help a year of fundraising in aid of them.” In June, Nicky and daughter Mia support and attend one of their took on the challenge of getting up events at georgesdragons.org The family, along with friends, have at 3.30am to successfully complete held events and taken on challenges the Guildford Sunrise Walk. The throughout the year, with mum Nicky family have also organised several

4 News Music to our ears and eyes Sarah Hodkinson and Vicky Kammin, Music Therapists at Shooting Star Children’s Hospices, have written chapters in a new book, Music Therapy in Children and Young People’s Palliative Care, published in August.

When a child has a life-limiting condition, communicating with people can be hard. Music therapy gives children an opportunity to communicate in new and profound ways, particularly as many of the children we care for are unable to speak and many struggle to express themselves. Music therapy sessions can provide a safe environment in which the therapist helps a child to find ways to share their feelings.

The book brings together music therapists who have worked in the wonderful and rewarding world of children’s end-of-life care. Examining techniques from working just with the breath to technological advances in music therapy, it highlights the benefits music therapy can bring when working alongside children and young people.

The chapters written by Sarah and Vicky will help provide music therapists and healthcare practitioners with the tools to reflect on their own professional challenges and deepen their understanding of the important role of music therapy in children’s end-of- life care.

Congratulations...

to Cara Taylor, Senior Staff Nurse at Shooting Star House, for being awarded the Leukaemia Care Award at the RCN Foundation Impact Awards 2019 – an event aimed at recognising and celebrating excellence in nursing. Cara, you’re a star!

To donate go to shootingstar.org.uk/donate or call 01932 823100 5 Ted’s story 6 Family story

Following the joy of taking their first child home, Arthur and Amber’s world was turned upside down when Ted was diagnosed with a life-limiting condition.

“Having grown up with a big family It was hard in the start for Hallie a lovely place and the nurses and and being surrounded by children, to understand why we come here carers are just so friendly and I knew early on that Ted didn’t seem or what Ted’s problems are, but as willing – they want to help you and to be developing how he should be,” she’s getting older she’s starting they want your children to have the explains Amber. “We took Ted to the to understand. She’s really good best memories.” doctors and he had numerous tests. with him and she takes care of him Eventually Ted was diagnosed with sometimes in her own little way. a condition called Aicardi-Goutieres Christopher’s is the perfect place for syndrome (AGS), which means that her – it’s the perfect place for both of he has brain damage ultimately and them to spend quality time together.” it affects his everyday life – he has a lot of healthcare needs, for instance Amber continues, “We love coming he’s fed via a tube in his stomach, to the family splash sessions in and he’s in a wheelchair.” the hydrotherapy pool – it’s really sensory so Ted can completely relax. Arthur continues, “Ted can’t sit up It gives us an opportunity to spend on his own, he can’t walk or talk, but time together in a safe environment he has his own sounds that we know – both Ted and Hallie always really mean if he’s unhappy or happy. He enjoy themselves. There’s also the To say thank you to Shooting Star needs 24-hour-care from us and has sensory room that Ted spends quite Children’s Hospices, Arthur and medication from when he first wakes a lot of time in when he has respite Amber have started fundraising and up in the morning to when he goes here and the garden, which has over the last few years have raised to bed.” amazing facilities for children in almost £11,000, with Arthur taking wheelchairs – Ted loves going on the part in two London Marathons to The level of care that Ted needs swing. It’s so accessible we can just date. “We obviously know how much resulted in him being referred to have care-free fun when we’re here. Shooting Star Children’s Hospices Shooting Star Children’s Hospices The TV room is also a big part of Ted’s help us and have an impact on not long after he was diagnosed. time here as he loves watching TV – our lives,” explains Amber, “but it’s “We didn’t know how much we in the cinema space we can just sit getting people to understand how needed a lifeline until we were back, relax and watch a film without much that means to us which is the given that lifeline,” says Amber. any pressures. difficult part because it’s obviously “Sometimes we just need a break not a place that everyone will come and Ted can come here and he still to. It’s trying to get across to people enjoys himself – it’s like a home from “It’s such a lovely that we would be lost without them home,” explains Arthur. place and the nurses and that’s why we want to raise money for them – if we didn’t have Christopher’s, our hospice in and carers are just so the hospice I don’t know what we Guildford, is also somewhere the friendly and willing.” would do.” whole family can enjoy time together, including Ted’s younger sister, “Aside from the respite we get, Arthur says, “As well as raising 3-year-old Hallie. Arthur says, “Being we’ve also had counselling and the money, running helps me to have here gives Hallie the opportunity to symptom care team help manage some time out – it’s cathartic. Ted will have quality time with her brother a lot of Ted’s needs. They’re at the sometimes join me on training runs in without the distraction of other end of a phone if we ever need them. a special chair; it’s a great way for us children as public places can be We’ve also made lifelong friends from to spend quality time together. Ted is quite overwhelming for Ted and being here. You do forget why you’re an inspiration to me and I’m so proud that makes it difficult for them to here sometimes because it’s such to be his dad.” share special moments together. To donate go to shootingstar.org.uk/donate or call 01932 823100 7 Feature “I felt that they knew us, our story, our son.”

There are many elements of the care we provide that set our hospices apart from a conventional hospital setting. We pride ourselves on being able to provide a completely bespoke level of care and support, not only to the child or young person with a life-limiting condition, but to the wider family unit.

The effects of the extremely difficult circumstances our supported families have to face, both emotionally and physically, can be far reaching and so our therapies team are on hand to ensure we can support families in a myriad of ways.

The holistic approach this vital team provides is often what keeps families going. Our therapeutic services, from counselling to creative therapies and occupational therapy to physiotherapy and complementary therapy, are available to all our families. In addition to the individual sessions and you’re done’ policy, so “The main focus of the survey was therapies, the team provides special we can support families from the ‘Why now?’ ‘Why us?’. We wanted to groups and events, such as siblings’ beginning to the end of the crisis find out what families thought about days, sensory days and dads’ days, or struggle they are experiencing. the overall quality of our therapy which give families an opportunity This makes our service unique.” The service and the reason they were to meet others in a similar situation multidisciplinary team serves as an accessing therapy at that time, to and share experiences. integral part of the wider care team, help us shape when to offer certain working very closely with the other therapies. We also wanted to know Carolyn Turner, Lead Therapist and care staff members to offer support if they had tried and failed to access Counsellor at Christopher’s our as well as training. services from their GP or somewhere Guildford hospice, said, “Therapies else, to help us determine what within the hospice service are very Over the last few months, to ensure is absolutely vital to families and holistic. With support from the wider we continue to meet the need otherwise not available. We had care team, we look after the needs and improve the therapy services separate surveys for adults and of the family and endeavour to provided, a survey* was sent to for children and made sure they be very flexible. This is something families asking them to answer remained anonymous so people we feel is vitally important so that a selection of questions relating could be honest and open with we can respond when we need to the therapies they’re receiving. their thoughts. to and for as long as they need.” Sarah explains, “Our aim was to hear “The survey’s proved that the Sarah Hodkinson, Lead Therapist from individuals who are currently services we provide are vitally and Music Therapist at Shooting having therapy, be it at the start, important to our families with Star House, our Hampton hospice, middle or end, with the idea being 100% of respondents agreeing agrees, “We look at every family if they recommended any changes or strongly agreeing that therapies individually and think about what we could action them now rather were beneficial.” they might need and how we can than waiting until they’ve finished help them. We don’t have a ‘six their therapy. 8 Feature

The Why us? “Our child had difficulty engaging survey with the support provided at the centre leading her treatment. The offer of support from Shooting Star results Children’s Hospices fitted our child perfectly and her therapist engaged Types of therapy with her in a way previous therapists had been unable to.” • Complementary therapy – aromatherapy, massage, reflexology etc Is there any way you feel we might • Counselling improve our therapies services? • Creative therapy – art, music “I cannot think of a way to improve the absolutely and drama fantastic and wonderful support you give as an • Occupational therapy – offering organisation. I cannot strongly enough tell you advice and solutions to help what a huge impact and positive effect that your everyday activities support has had on our children and as a result our entire family. I think we would be in a terrible • Physiotherapy and place without it.” hydrotherapy • Therapy groups and events Therapy sessions help me to… “Not feel lonely, I really enjoyed going to the hospice, it gives me good memories of my brother.”

“Understand and come to terms with whatever I have been facing.”

How have therapies helped you? “My son appears to be emotionally stronger. My husband is able to rest. I am able to cry.”

“It is almost indescribable as to how important and vital this therapy has been for our child. Previously unable to sleep, suffering from feelings of low self-esteem and thoughts of dying, the therapist allowed our child an outlet of expression, which has enabled her to start overcoming the trauma of her treatment.”

If I could change one thing about therapies at Shooting Star Children’s Hospice, I would change….

*42 adults and 10 children responded “Nothing.” to the survey (40% response rate).

To donate go to shootingstar.org.uk/donate or call 01932 823100 9 News Fabulous feedback from our volunteers

Earlier this year, a survey* was sent to our incredible Our voluntary roles are extremely flexible, which is volunteers – 773 of them – to gather feedback on reflected in the 91% who answered that volunteering their experience of volunteering for Shooting Star is sufficiently flexible to suit their lifestyle. There are a Children’s Hospices. number of different roles available – from receptionists to gardeners, retail assistants and administrators to The response was overwhelmingly positive with 97% complementary therapists and counsellors – enabling proud to volunteer for Shooting Star Children’s Hospices volunteers to learn new skills and meet new people; and 98% stating they would recommend volunteering according to our survey, meeting new people was one for Shooting Star Children’s Hospices. Furthermore, of the main benefits of volunteering. over a third of the respondents have volunteered for us for more than six years, which is testament to how The results of the survey will now help to shape and valued they feel in their roles – in fact, 94% responded improve our volunteer programme. If you’d like to find that the feel appreciated for what they do. out more about volunteering for your local children’s hospice, visit shootingstar.org.uk/volunteer *259 volunteers responded to the survey (33.5% response rate)

Obsta-calling you to take on Spartan!

For the first time in the UK, Spartan is coming to Twickenham Stadium – and Shooting Star Children’s Hospices will be the official charity partner!

The Twickenham Stadion Race is a 5km, 20-obstacle race that offers a fresh challenge for all abilities, whether you’re a new racer or a seasoned pro. Throwing a number of exciting and unfamiliar obstacles in racers’ paths, racers will get the opportunity to experience a Spartan race at the home of rugby – what’s not to love? Keep an eye on our social media pages for more information.

@sschospices 10 A day in the life

Two years ago Gemma Garman left her role on the children’s ward at The Royal Marsden to join the team of nurses at Shooting Star Children’s Hospices. Here she explains what being a Hospice at Home Nurse involves.

“Being a Hospice at to families and helps to alleviate Home Nurse means stress. Sometimes families might having very varied days – contact me with general questions no day is the same. I could about the hospice, other times be in meetings or liaising I might be helping to sort funding with external professionals to for transport so they can get to get the right support for a family a therapy session at the hospice. in terms of health, education and social care, I might be checking “Being an advocate for families and in with families or I might be doing being able to make a difference is a respite visit. the best part of my role. I see first- hand how much families take on “Respite visits are where we take caring for a child with a life-limiting over the care of the child, so the condition, so to be able to give them parents or carer can have a break. a break and see them come back We also do sensory and play looking a bit more refreshed is really A day in activities with the child, dependant rewarding. I also enjoy seeing the on their cognitive ability, during the children we support take part in the life three hour visit. Some families drop various activities at the hospices. their child at one of our hospices I watched the final performance for a respite visit, so the child can at the recent Festival of Music and of a… make use of all the facilities – the it sent shivers up my spine. It was hydrotherapy pool, the sensory just beautiful. room, soft play etc. We’ll also do Hospice respite visits in hospital where “Quite naturally, the hardest part needed. I’m currently supporting of my role is caring for end-of-life a family whose child has complex children – particularly as you build at Home care needs and no one at their local a rapport with families. It’s hard hospital knows how to do some seeing a family you’ve got to know Nurse aspects of her care, so her mum is lose a child. Part of my role in still caring 24/7 whilst in hospital – providing end-of-life care is ensuring I’ll go into hospital to cover the care that families are as prepared as they for a few hours so the child’s mum can be and have all the information can have a rest, do some household they need, so they can make chores, go food shopping, or just informed decisions. If a family’s have a coffee with friends. wishes are for their child to die at home, we work closely with the “Another key part of my role is being community team to try and aid that. at the end of a phone whenever We also help manage the symptoms, families need me. Every family is so it quite often means we’re allocated a keyworker, a named administering drugs and medication. Hospice at Home nurse or carer as It’s a real privilege that families let the main point of contact for them. us into their homes during one of Having someone they can turn to the most difficult times they will face, and knowing that person will sort and allow us to almost become out whatever might be the issue a part of their family.” or the problem is really important To donate go to shootingstar.org.uk/donate or call 01932 823100 11 Dylan-James’ story 12 Family story

After being given the devastating news that their son’s cancer had returned, Alison and Warren spent a week at Shooting Star Children’s Hospices making memories they’ll cherish forever.

“It was the end of term, not long Sadly, shortly after arriving back at before Dylan-James’ 3rd birthday Shooting Star House, Dylan-James when he was first diagnosed,” died – less than a year after first explains Alison. “I’d taken Dylan- being diagnosed and just weeks James and his younger brother Elliott before his 4th birthday. “He just fell to have their vaccinations for a family asleep in my arms next to his daddy,” holiday, but Dylan-James just wasn’t explains Alison. “I cuddled him for bouncing back and he had a fever. two hours before we went to the One evening Warren said that Dylan- Tranquil Suite. The lovely staff at the James’ tummy didn’t feel right – it felt hospice had changed the bedding hard, so we went to A&E. They said to his favourite superhero ‘Catboy’ the four worst words any parent can and projected stars on the ceiling, hear: ‘Your child has cancer’, and our which was so beautiful. whole universe changed.” had just two months to live. It didn’t “They looked after all of us and Dylan-James was diagnosed with feel right to lose Dylan-James in they’re still looking after me now. Stage 3 Wilms Tumour – a childhood hospital, so the other options were We came to the Memory Day and cancer that is 90% curable. He started to take him home or to Shooting Star I’ve been having bereavement chemotherapy straight away to shrink Children’s Hospices – it was actually therapy – we were so well looked the tumour, which was attached to my sister who said to go and see the after by Shooting Star Children’s his kidney. Following four weeks of hospice, because I just wanted to take Hospices that I feel comforted treatment, the tumour and Dylan- him home. Dylan-James came with when I come back. James’ kidney were successfully us when we visited Shooting Star removed and he was home just a few House in Hampton and as soon as days later to celebrate his birthday. we walked in and I saw how happy “It’s amazing how the Dylan-James then underwent a he was that was enough for me, my worst time of your further ten months of chemotherapy decision was made. and radiotherapy in case any cells life becomes such a from the tumour had spilled. “Every “We went straight to Shooting Star treasured memory.” month the CT scans were clear,” House from hospital and it was just said Alison, “but in May, with just amazing – not only did the care team “Dylan-James was absolutely beautiful one more month of treatment to go, look after Dylan-James, they looked inside and out – happy, clever, funny, we were told the cancer had come after us and the rest of the family. resilient and inspiring. He was like back in the original site as well as They were like angels. We loved magic. We were told we would have his lung. We tried various different using all the facilities for that week, two months with him, but it was only treatment options at The Royal particularly the sensory room and actually just over a week – we had Marsden, but nothing worked and the gardens. The care team also took that week at Shooting Star Children’s then it all happened very quickly.” hand prints to go on a bracelet, which Hospices and what a precious week it means the world to me. At the end was. We are heartbroken without him, Dylan-James started to experience of the first week we took Dylan-James but it’s amazing how the worst time breathing distress so he was home for two days and the Hospice of your life becomes such a treasured transferred to nearby St George’s. at Home team came out to check memory and it’s Shooting Star “We were in intensive care and it on us. He was so pleased to be Children’s Hospices that made that wasn’t looking good, even though at home, to see his toys and sit in possible. I can’t put into words how Dylan-James just seemed so well. the garden.” much of a lifeline they’ve been.” It was there that we were told he To donate go to shootingstar.org.uk/donate or call 01932 823100 13 A look inside / Why I love A look inside... Why I love Woodlarks Shooting Star Children’s Hospices

Every summer, teenagers supported However, with the care and volunteer by Shooting Star Children’s team present and disabled-friendly Stephen Sutton has fundraised for Hospices have the opportunity changing rooms and equipment, Shooting Star Children’s Hospices to enjoy a weekend away in the the teenagers could simply relax for the last two years – running the great outdoors with some of our and have lots of fun in the water. London Marathon twice and holding fantastic care team and volunteers a golf day through his jewellery at Woodlarks. Vikki German, Play and Activities business, Cry for the Moon, which Coordinator at Shooting Star House, is based in Guildford. The Farnham-based residential who organised the weekend with activity centre provides accessible Robson Bogdanski, Hospice at “Having chosen Shooting Star camping for people with all kinds of Home Carer, said, “Feedback from Children’s Hospices as Cry for the disabilities. The site is based across the kids has been that they all Moon’s charity of the year in 2018 12 acres of field and woodland, with had a really fun weekend. Some and 2019, I’ve been bowled over by accessible buildings, an outdoor of those who were shy at the start the care that they offer to children heated swimming pool and woodland of the weekend really came out of and families who face the most trails. The setting provides a perfect themselves and we could see them impossible situations. Cry for the backdrop for some of our supported embracing their independence.” Moon will again be holding a charity teenagers, who all have life-limiting golf event at Guildford Golf Club conditions with a range of complex Weekends away like Woodlarks are to help raise more money for this needs, to have a weekend of fun and really important for the young people fabulous and important charity.” independence in a safe environment. we support, giving them a chance to experience some independence, The most recent trip had the theme which for young people with life- of ‘Woodlarks Get Me Out of Here’ limiting conditions isn’t always with various creepy (crawlie!) straightforward. It also gives them an challenges in store for the teens. opportunity to interact with peers in With edible bug challenges and a similar position and develop social team-building obstacle courses, the friendships in a safe environment. group also made use of the heated outdoor pool. Swimming in a public Visits like these are just part of pool is often an activity that isn’t the support we offer for young possible for the children we support, people and the wider family – with given accessibility difficulties or a wealth of family events held water temperature. throughout the year. See the types of events we offer families at shootingstar.org.uk/family-events

14 Fabulous fundraisers / Over to you Fabulous fundraisers

Musical stars Knit one, sell one… Beach fun thanks The Garrick Temple, Hampton, Our wonderful Friends’ Groups in to 7 year old was the beautiful setting for a Ham, Petersham and Richmond, Thanks to a very special birthday wonderful musical performance Epsom and Ewell, and Greenford and girl, Lilah Webbstock, families from local talented musicians: Ickenham have for many years been were treated to a fin-tastic Soo Young Chung, Megan Clarke, hard at work knitting novelties to sell sensory seaside at a recent Emilia Gahan, Sophie Goodwin, at Easter and Christmas. And thanks beach-themed activity day. Catherine James, Sophia Membery to our brilliant knitters just this year Lilah, who wanted to make children and Sarah Rudd. Following the girls’ so far a tremendous £10,000 has happy on her birthday, set up a impressive performance, over been raised. For further information birthday fundraiser asking people £400 was collected for Shooting about the novelties please contact to donate in lieu of birthday gifts Star Children’s Hospices. [email protected] and raised £658.65.

Over to you

Can your company Our shops need you! Join our lottery and help raise support us? We rely on volunteers to give their vital funds Corporate fundraising is a great time and expertise in our 13 charity Joining the lottery couldn’t be easier way to support your local children’s shops. If you’ve recently retired, – to sign up visit shootingstar.org.uk/ hospice. So, if you or someone you your children have started school, lottery. It costs just £1 a week to play know works for a company that or perhaps you have moved to a new and you’ll be helping fund our vital would like to find out more about area and are looking to meet people, care service. You can have as many supporting us, we’d love to hear from then volunteering in our shops could numbers as you like and you could you. Please visit shootingstar.org.uk/ be the answer. To find out more visit win up to £1,000. Sign up today! corporate-support shootingstar.org.uk/volunteer

To donate go to shootingstar.org.uk/donate or call 01932 823100 15 Your momentmoment toto RemRememberember

Join us at our annual Fire Walk Walk this way for a truly unforgettable experience – our annual Fire Walk is a mind over matter challenge that puts your courage to the test as you walk across temperatures of up to 1200F! Thursday 7th November 2019 Fire Walk starts at 6pm Chiswick Park, London

shootingstar.org.uk/fire-walk The Fire Walk is open to ages 18+

Registered Charity No: 1042495

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