Shinethe Shooting Star Chase magazine

Summer 2017

Families have their sayHow the results from our family survey are shaping our future service

Supported teenager finds his voice through music

Satellite hubs provide extra support in the community

James’, Orla’s and George’s stories

Make every moment count for babies, children and young people with life-limiting conditions, and their families.

3To donate go to shootingstarchase.org.uk/donate or call 01932 823100 3

Welcome to the summer 2017 edition of Shine, which aims to show how your support helps Shooting Star Chase make every moment count for babies, children and young people with life-limiting conditions, and their families. Our guest editor this edition is William, who was one of the first children supported by Shooting Star House in Hampton over ten years ago!

“I’m William and I’m 17 years old. I’m currently at sixth form studying chemistry and media, and in my spare time I like playing my PS4, watching films, going to see Chelsea play and listening to indie music. My favourite bands are Catfish and the Bottlemen, The Kooks and Green Day.

“My family and I started staying at Shooting Star House when I was five, and my sister, Harriet, and I loved to play in the pool and the art room. I even remember the baths that moved up and down – I thought they were great!

“Over the last few years I’ve been visited by a Hospice at Home nurse rather than staying at the hospice, and we’ve done things like play games, cook or go to the golf course – which has been really fun and good to focus on something other than being poorly.

“It’s been great overseeing this edition of Shine, especially because I’m doing a BTEC in media at the moment. There are some exciting things going on at the charity – check out Amyas’ romantic song on page 10 and read what families think about Shooting Star Chase’s support on page 14.”

Highlights insideNews3 Satellite hubs takes care service on the road4 Rise and Shine... and walk!8 Birthday bonus thanks to lottery9 A day in the life of a... Challenge Events Fundraiser10 Supported teenager finds his voice through music therapy11 A look inside… bereavement suites

Family stories6 James’ story 12 Orla’s story 16 George’s story

Feature14 Family Survey: the results

Your Shooting Star Chase 18 Fabulous Fundraisers19 Over to you

Shine Summer 2017 News

And money raised so far in 2016/17

1,539 bednights1,683 in Apr 16 to Sept 16

4,146 hours of Hospice at Home visits4,347 in Apr 16 to Sept 16

Supported 690 families692 in Apr 16 to Sept 16

£6.5m Against a target of £7.5m in Apr 16 to Feb 17

Care we have provided in the last six monthsCare figures cover October 2016 to 22nd March 2017.

Welcome to Shine!

WilliamSatellite hubs takes care service on the road Shooting Star Chase has launched satellite hubs in the community to ensure more families can access support groups close to home.

The satellite hubs have been set up in recognition of the challenges faced by families who live far from our hospices. They aim to give supported families a chance to enjoy activities that regularly take place at the hospices and to socialise together with other families who live nearby.

Based on feedback from our 2016 family survey, Croydon and Harrow were identified as two key locations to launch a six-month pilot of two formats – a drop-in coffee morning networking group for parents during term-time, and four-hour activity

sessions during the school holidays for children.

In December, the first coffee morning took place near Croydon and was followed in February half-term by a session for 5- to 14- year-olds which included creative art, relaxing story massage and party games suitable for the children in attendance. Feedback has been extremely positive and plans to roll out the scheme in Harrow are underway.

Paula Manders, Hospice at Home Manager at Shooting Star Chase, said: “The satellite hubs are a really important service to bridge the gap for families who have difficulty accessing groups at our hospices. We cover a very large catchment

area and for families living in the furthest points, travelling with their child to one of our hospices for an hour or two is not always practical. These hubs will ensure those families don’t miss out on important areas of our service.

“The groups provide extra support for families and will help them to meet other families in similar situations, while also providing new activities for children to access, which we know aren’t otherwise available in these areas.

“We pride ourselves on being able to deliver care to meet the needs of families, so this is a key development in showing how we can adapt our service in order to provide the very best care to families.”

Shooting Star Chase, Bridge House, Addlestone Road, Surrey, KT15 2UE t 01932 823100 f 01932 858399 e hello@shootingstarchase.org.uk w shootingstarchase.org.uk sschospices Registered Charity No: 1042495

make every moment count

To donate go to shootingstarchase.org.uk/donate or call 01932 823100 5

Rise and Shine... and walk!Shooting Star Chase’s flagship challenge event, the Sunrise Walk, is back for its fifth year, and we’re calling on supporters to make it the biggest year to date.

The Sunrise Walk launched in 2013 and has so far seen more than 1,000 walkers of all ages and abilities rise and shine to take part, raising £175,000 along the way.

The fifth Sunrise Walk starts at Ham House on Sunday 4th June at 4.30am and offer two routes – the much-loved 20km route and a 10km option ideal for families with children.

The routes take walkers past some stunning sights including Richmond Park, Ham Common, Bushy Park and Hampton Court Palace. Every step you take will help to make every moment count for bereaved families supported by Shooting Star Chase.

All walkers taking part will be offered a free lantern to hang on our celebration tree to light the start line.

This year’s target of £60,000 will enable Shooting Star Chase to continue providing services such as bereavement counselling for parents, siblings and other family members who are coping with the devastating loss of a child.

All walkers receive a commemorative medal at the finish line, a free breakfast and the ability to explore the gardens at Ham House free of charge after the walk.

Mrs Pinkypops says: “To find out more visit shootingstarchase.org.uk/

sunrisewalk or call 01932 823115.”

William, Guest Editor“Anyone who does a long walk at 4.30am has my respect!”

Stars become brokers at ICAP Our Royal Patron, HRH The Countess of Wessex and Vice-President Tony Hadley were among friends of Shooting Star Chase who took to the phones with City brokers in December to help raise money to refurbish our hospice in Guildford, Christopher’s.

The fundraiser was part of the 24th annual ICAP Charity Day, which sees charity patrons and celebrity friends assist brokers in negotiating deals with ICAP customers. All revenues and brokers’ commissions on deals closed on the day were donated towards the special projects of ICAP’s chosen charities.

As well as The Countess of Wessex and Tony Hadley, Shooting Star Chase also enlisted the support of patrons Jackie and Laurence Llewelyn-Bowen and celebrity friends Dermot O’Leary, Louis Walsh and The X Factor star Honey G.

After presenting the need to refurb Christopher’s to ICAP, Shooting Star Chase was selected as one of 200 global charities for 2016. The donation will enable improvements to be made to bedrooms, bathrooms

and communal areas, and an upgrade to facilities for children with life-limiting conditions. The project, which is taking place in 2017, will be the first refurbishment since Christopher’s opened 16 years ago.

Karen Sugarman, Director of Fundraising Development at Shooting Star Chase, said: “It was a huge privilege and honour to be one of the beneficiaries for ICAP’s Charity Day and we can’t thank ICAP enough for the opportunity. Our patrons and celebrities did an amazing job closing deals and really got into the spirit of the day. These funds are separate to the £10 million we need to raise to maintain our vital care service and it’s fantastic this money will allow us to refurbish the hospice. In doing so ICAP has made a true and lasting legacy for children with life-limiting conditions, and their families.”

William, Guest Editor “I went to The X Factor studios last year and met some of the judges and

contestants, including Dermot and Honey G. The way Louis winds Simon Cowell up makes me laugh!”

News News

Please stay in touch!Shooting Star Chase is calling on supporters to update their contact preferences to ensure new fundraising regulations don’t result in losing contact with our vital work. As a result of the shifting fundraising landscape, imminent regulations will bring changes to how supporter information is accessed and controlled. The changes are predicted to revert from an opt-out process, where charities can contact supporters unless they have specified otherwise, to an opt-in policy where charities will not be able to contact supporters unless they proactively give consent, even if they have been happy to receive communications in the past. For Shooting Star Chase this means we may be unable to contact a large proportion of our database to keep supporters in touch with the charity’s vital work, which would impact on our ability to raise the funds needed to care for children and their families.

Last year, we launched ‘Our promise’, a commitment to supporters to ensure we communicate with them how they want. This promise also reminds supporters we never share their details with other organisations; we communicate appropriately and sensitively and are especially careful when engaging with vulnerable people; and we adopt best fundraising practice as outlined by regulatory bodies and will continue to do so.

To ensure supporters don’t inadvertently stop hearing from us, we are encouraging them to update their contact preferences to control the level and types of communications they receive. To do that, please contact Supporter Care Services on 01932 823115 or at supportercare@shootingstarchase.org.uk

New Fulham shopWe are excited to announce that Fulham will be the location for Shooting Star Chase’s newest shop! Our tenth shop will be on the Fulham Road in SW6 and is the latest expansion of our retail network aimed at increasing sustainable income. Our shops rely on both quality donations and volunteers to keep them open. If you can help please contact ruth.shaw@shootingstarchase.org.uk or call 01932 823100.

7To donate go to shootingstarchase.org.uk/donate or call 01932 823100

Epidermolysis Bullosa (EB) is a rare skin condition affecting around 5,000 people in the UK. People with EB have extremely fragile skin, which can tear and blister at the slightest touch. There are many variants, and 22-months-old James has the most severe form of the condition.“It’s one of the most painful conditions you can imagine and everyday activities can cause him significant skin damage,” says mum Beata. “The whole of his body is very fragile. He gets blisters very easily and they need to be attended to quickly because if you don’t the liquid will fill up and the resulting damage is even worse. Having constant wounds and the healing of those wounds is very demanding on his body. It also impacts on the connective tissue so it affects his eyes, mouth and internal organs.”

James’ condition had come as a complete shock for Beata and dad George. “We had been trying for a while and were overjoyed to find out I was pregnant. The pregnancy was very normal, the scans were normal and the birth itself went according to plan. But as soon as James was born I noticed his legs were a different colour. We later learned that was because he had no skin on them. James was obviously in a lot of pain and was taken away. That’s when the shock started to kick in. We’d had no problems in pregnancy or the birth and suddenly we knew something was wrong but didn’t know what. Each minute that passed felt like an eternity.

“I think the nurses and the doctors had an idea it was EB but it was

about three weeks before we got a full diagnosis. There’s no history of similar conditions in either family but it turns out George and I both carry the gene and it can be passed when two carriers of the same subtype meet. Learning about EB, reading that there’s no cure and seeing the prognosis was overwhelming. The main problem with EB is the frequent and repeated damage of the skin. The condition is progressive and eventually the skin won’t be able to heal itself. People with EB have a very high risk of skin cancer. That’s something we have to bear in mind and do everything we can to help prevent wounds.”

James requires round-the-clock care. “Just by rubbing his face he can get wounds and he can also get blisters in his eyes and mouth. Everyday care is so much harder. If you imagine the time it takes to look after a healthy baby, you can triple or quadruple that for James. 90% of his body is covered in some kind of bandage, so simple things like changing his nappy and getting dressed can take up to an hour. Bath time, when we change all his bandages, takes three hours every day and requires two people – someone to hold and distract him and the other to treat the wounds and apply the dressings

“As well as the bandages, he has lots of ointments and medications – his room is like a mini-hospital in that sense. Even seams in clothes can damage his skin, so we stitch everything down. He doesn’t have any break from it and neither do we. I don’t think that will ever get easier.

“Despite of all this James is very resilient. His skin might be fragile, but he is tough on the inside. Sometimes he’ll have a huge blister and you have to deal with it. He’ll

cry for a minute and then the next minute he’s smiling at you. He is so determined. Sometimes you can see he is in pain but trying not to show it.”

Beata and George also have to deal with the emotional impact. “It is devastating to see him in pain. You wouldn’t think by feeding or hugging your child it would cause them pain or damage. It’s hard to find time to recharge, to spend time together or do normal family activities. Seeing James in pain is terrible, but it’s worse knowing you can’t solve it or protect him. Sometimes we blame ourselves or end up blaming each other – you see a wound and you don’t know where it has come from because it can happen so easily. We have to remind ourselves that he’s got this horrible condition and these things are a consequence of that.”

The family were referred to Shooting Star Chase within weeks of James’ diagnosis in order get some vital support. “Initially we received support from the Hospice at Home team and we visited Shooting Star House to see all the other great facilities on offer. We felt the best way of using the hospice for our needs was to use day care once a week. Because James is so fragile it was quite a big step for us to let someone else look after him. But you can see the way he has progressed from being in day care. They do lovely activities for him and he particularly loves all the music sessions they do. It’s a lovely team and they do all they can to look after him. One of the team went to the EB conference to learn even more about his condition. That shows that they really care about him as a person.

“Shooting Star Chase has been a very positive influence on James and it’s been really helpful for me too. I’ve been to a mums’ pamper day which was really sweet – I had a head massage and reflexology. It was a really nice gesture and it’s so rare to get a bit of pampering nowadays. The respite support really helps us and more importantly it has helped James’ development.”

Family story

James’ story “Because James is so fragile it was quite a big step for us to let someone else look after him. But you can see the way he has progressed from being in day care.”

Family story

9To donate go to shootingstarchase.org.uk/donate or call 01932 823100

A day in the lifeNews / A look inside

More than 1,600 people took part in a challenge event for Shooting Star Chase last year, helping to raise a massive £500,000. But what does it take to organise one of the charity’s bespoke events like the Sunrise Walk? Challenge Events Fundraiser, Kate Law, explains.

“We book the Sunrise Walk venue with the council the day after the last one, so the planning effectively starts a year in advance. In January, six months before the event, the real work starts! I spend a lot of time at the beginning of the process working with the Communications and Marketing Team to create a presence on our website, produce flyers and posters, and advertise on social media, in enewsletters and publications so people know about the event and how to get involved.

“After the initial push, my mornings start with logging on to our registry software to see how many people have signed up, and I’ll put together fundraising packs for new participants. We like to keep in touch with our challengers so I also regularly send information and training tips to keep them motivated right up until the event day.

“I spend a large part of my days in the months leading up to the event focusing on the logistics – such as putting out requests for volunteer marshalls, booking food vans and hiring marquees, sourcing stallholders, and plotting the route and reception location. Once registration closes I focus on tasks such as the final participant list and walker numbers so we can keep track of everyone involved, getting signage up on the walk so no one gets lost and taking delivery of equipment and food.

“The day before the Sunrise Walk I always cycle the route to make sure everything is OK. Taking it all in before a big event is one of my favourite things to do. We wake up at 1.30am on the morning of the Sunrise Walk to start setting up and then welcome our amazing walkers a few hours later. There’s nothing better than meeting our supporters and watching them take on a challenge – and the Sunrise Walk is particularly special because it’s in a beautiful setting and always feels quite poignant.

“After the Sunrise Walk has finished we spend a few hours packing

everything away, and then we all go for lunch to celebrate, knowing tomorrow we’ll be focusing on the next event!”

Why I love Shooting Star Chase

Iain PatonCommunity fundraising volunteer

“I really enjoy volunteering with the Community Fundraising Team – it’s great to be part of somewhere that has a real sense of purpose and a commitment to making a difference. I took part in last year’s Sunrise Walk and the carol concert, and it really brought home to me the incredible support Shooting Star Chase provides local families.”

A day in the life of a... Challenge Events Fundraiser

Birthday bonus thanks to lottery Jayne Poland received a birthday bonus after signing up to our lottery – winning £1,000 on her birthday.

The Epsom resident had only been signed up to play the lottery – which offers 103 cash prizes every week – for a few months, before she was drawn as the top prize winner.

“I’ve given to a number of charities in the past, but have recently been a bit dubious to donate because you never really know where the funds go,” says Jayne. “When I was told about the Tuckwell Chase Lottery and that profits go straight to the hospices in my area, I decided it was a no-brainer. I knew I’d be giving to an extremely worthy cause and may well be in with the chance of winning

myself, although I never really gave that a second thought.

“I’d only been doing the lottery for a few months when a cheque for £1,000 came through the post… on my birthday of all days! I couldn’t believe it. I used the winnings to pay off some debt and gave my kids some money too. When I signed up I just thought it would be good to give to charity so I’m still going to continue with my direct debit every month – and I’ve recommended the lottery to all my friends.”

The Tuckwell Chase Lottery is a joint venture between Shooting Star Chase and adult hospice, Phyllis Tuckwell. It raises funds for both charities to support hospice care

in London, Surrey and north-east Hampshire.

Costing just £1 a week to play, 103 winners are selected at random by computer every week, with prizes ranging from £5 to £1,000. The winning number is publicised weekly on our website and cheques are automatically sent to the winner straight after the draw.

Professor Popplepants says: “If I won I’d throw a big party for the Friendlies, or take Nurse Luffley out for dinner. What would you do with £1,000? You can sign up to the Tuckwell Chase Lottery at shootingstarchase.org.uk/lottery.”

A look inside... the cinema room Multi-coloured remote blackout blinds, impressive surround sound and stunning hue lighting – not forgetting a giant projector screen – create the ultimate sensory experience for the children and young people we support in our state of the art cinema room.

The cinema room resides at our Guildford hospice, Christopher’s, and was launched in December 2016 thanks to the generosity of Together for Cinema, a collaboration of

companies from the AV industry, who work together to bring the cinema experience to children’s hospices.

The installation would have cost more than £40,000, but thanks to the generosity of suppliers and installers it was donated completely free of charge.

“Everyone loves the cinema room,” says Geraldine Sheedy, Head of Care at Christopher’s. “Whether it’s individuals or groups of children

sitting to watch a movie, our youth group having a dedicated movie night or a family sitting together to enjoy a true cinema experience, there’s no doubt the room creates many special, long-lasting memories for the children, young people and families who visit Christopher’s.”

William, Guest Editor “I would’ve loved a cinema room when I stayed at the

hospice – I know this will be really popular!”

To donate go to shootingstarchase.org.uk/donate or call 01932 823100

11To donate go to shootingstarchase.org.uk/donate or call 01932 823100

Supported teenager finds his voice through music therapyA supported teenager who struggles to speak has defied his condition to write and record a music album during weekly therapy sessions at our hospice in Hampton, Shooting Star House.

16-year-old Amyas penned the lyrics to the nine-song album and recorded it with musical accompaniment from Lead Therapist, Sarah Hodkinson. The album will be a keepsake for Amyas, and his family and friends.

Showing himself as a true romantic, one of Amyas’ songs, ‘Love’, was written for a 16-year-old girl called Jordan, who is also supported by Shooting Star Chase, and he played her the track on Valentine’s Day as he

handed over a card to declare his love. Amyas has a genetic condition called Lesch-Nyhan syndrome, which means he uses a wheelchair, has involuntary muscle movements and has difficulty speaking clearly. He’s been supported by Shooting Star Chase for eight years and benefits from services such as short breaks at Shooting Star House, music therapy and youth groups.

Sarah says the music therapy sessions have been an invaluable support to Amyas. “Music therapy gives supported children an opportunity to communicate in new and profound ways, particularly as many of those we care for are unable to speak and struggle to express

themselves. Amyas absolutely knows what he wants to say but it can be very difficult for him. He loves making music and the sessions have enabled him to convey his thoughts and feelings through lyrics, and he’s grown in confidence. He’s even had a photo shoot for his album cover. I think we have a superstar in the making!”

Fitch says: “You can watch the brilliant video for Amyas’ song, ‘Love’, at

shootingstarchase.org.uk/love.”

William, Guest Editor“I’d give this a 10 out of 10 for romance, Amyas! Good work.”

News

Nice job! Alice Biggar, winner of The Nicest Job in Britain placement, came to Shooting Star Chase in December.

The scheme sees an enthusiastic philanthropist with a passion for helping others travel the country to work with 40 charities in one year. Alice got stuck in at Shooting Star Chase, working in our Weybridge shop, assisting care staff at both hospices and on a Hospice at Home visit, and even gave our housekeeping volunteers a hand with the laundry!

“As someone with no experience of hospices I have to admit this was the one placement I was most unsure about,” said Alice. “I couldn’t picture anywhere more depressing but everyone I spoke to beforehand assured me they are very happy places and the people there are

some of the nicest you will ever meet. I was intrigued to find out how somewhere you go to die could be happy. I’ve now realised hospices are not about dying, they are about living. Shooting Star Chase works tirelessly to give children and their families special memories. Their motto of make every moment count is exactly what I saw.”

Melanie Hill, Head of Volunteering at Shooting Star Chase, was grateful for Alice’s support. “It was fantastic to be selected for the Nicest Job in Britain. Alice was an absolute delight and threw herself in to everything from the moment she arrived.”

Fifi says: “We rely on our volunteers to keep the charity running

and you don’t have to win the Nicest Job in Britain to get involved! There’s a range of opportunities. To find out more call 01932 823100 or email volunteers@shootingstarchase.org.uk.”

A look inside / news

A look inside… bereavement suitesAt Shooting Star Chase, care does not stop after a child has died. We continue to provide practical and emotional support for the entire family for as long as they need. We have a dedicated area at each hospice where a child can lay at rest, allowing their family to say goodbye in a familiar and supportive environment.

As well as making every moment count throughout a child’s life, end-of-life care remains a fundamental and valued part of the care we offer. Last year, our bereavements suites were in use for 209 nights.

The Tranquil Suite at Shooting Star House and the Mistral Suite at Christopher’s both have their own private garden, a special area where families can go for tranquillity, reflection and solace. These memory gardens also allow families to memorialise their loved one by placing a personalised, engraved leaf or star on the gardens’ memory trees.

What the families say: “Alice continued to be cared for in the Tranquil Suite after her death and despite extreme sadness, we had the comfort of knowing that Alice was being beautifully looked after and we could visit her at any time. This was a massive support for us and allowed us to slowly come to terms with the awful reality of Alice’s passing.”

13To donate go to shootingstarchase.org.uk/donate or call 01932 823100

Family story

Following a devastating diagnosis during pregnancy, parents Helen and Ben didn’t think they’d get more than a few hours with their baby. But Orla came out fighting and the family spent three days together, making precious memories they’ll never forget.“We’d lost a child previously from Jeune Syndrome and there was a one in four chance this baby would have the condition too,” explains Helen. A scan at 16 weeks showed their baby’s chest was small and they were referred for further tests which confirmed Jeune Syndrome. Helen and Ben were given the option of ending the pregnancy, but chose to continue. “Jeune Syndrome is a spectrum. You can have it quite mildly where you have smaller lungs than average but they’re able to function, right to the severe end of the scale where the baby can’t take a single breath.”

The family were referred to Shooting Star Chase by their midwife. “We had a look round Christopher’s and we really liked it. Finley, our four-year-old son, loved it. We were told we’d be able to go there after Orla was born whatever happened. Either way we decided it would be the best place so Finley could have memories of her at the hospice rather than see her die in hospital and be scared of hospitals. At the time I was feeling optimistic and I’d convinced myself she’d be OK and wouldn’t need the hospice. But then we had an MRI which confirmed her lungs were too small to survive.”

The family were told palliative care was the best option. “It’s a battle

in your head – you want to throw everything at your child to give them a chance of survival but then you don’t want them to survive and have a life of suffering. The doctors all felt that active intervention would have only given Orla a few days and those days would have been in a neonatal unit with tubes everywhere, which wouldn’t have been any life. In the end we got to have three days at Christopher’s with her which we never thought would happen. She was surrounded by her family getting to see and do things we never dreamt possible. The best case scenario we’d allowed in our head was she’d be born and we’d go straight to Christopher’s and she’d pass away quietly within hours, but she came out breathing. We stayed in hospital initially because we hadn’t expected her to be alive and we wanted to make sure there wasn’t anything that could be done.”

When it was decided palliative care was still the most appropriate course of action the family transferred to Christopher’s. “We went in the sensory room and the garden, Finley played music on the pipes and sang to Orla, they went on the roundabout together and I sat on the edge of the trampoline with her while Finley was bouncing. We have so many lovely family memories at Christopher’s.”

Orla passed away peacefully in the sensory room surrounded by her family. “We took her to the Mistral Suite and we all went to say goodbye. Staff organised for Orla’s heart valves to be donated, which will go on to help two people with heart conditions.

“We stayed at Christopher’s for another week. Finley had loads of fun while my husband and I got to spend

time with Orla. The team helped us create memories and keepsakes – hand and foot prints, photos, casts, finger and thumb prints and a lock of hair. We treasure them all and they help keep Orla’s memory alive. After the funeral we went back to Christopher’s to let balloons off and that’s one of the things Finley really remembers. He rarely gets upset because he remembers Orla with happy memories.”

Following Orla’s death, Helen has accessed Shooting Star Chase’s counselling service. “The counselling has been really good so far and I’ve also received lots of useful advice about how to help Finley.”

The family have since raised thousands of pounds for Shooting Star Chase. “Fundraising has given me a focus. While we were staying at the hospice I signed up for the London Marathon – I needed a goal and I wanted to give something back.” Helen and Ben have also organised a Halloween party, done a sponsored run dressed as pumpkins, taken part in our Fire Walk and organised Run for Orla – a virtual run which saw participants from as far as America and Australia run in her memory. “I wanted something positive to come from Orla’s death,” says Helen. “We’re never going to get Orla back but we don’t want her loss to have been for nothing. It’s a nice feeling for us to know all these people now know about her and are aware of what the hospice can offer.

“When you’re only going to have such a small amount of time you want that time to be as good as it can be. There isn’t anything we look back on and wish we’d have done differently. Given the circumstances it couldn’t have been any better. Shooting Star Chase gave us three days together with Orla getting to see and do things we never dreamt would be possible and creating family memories we’ll never forget.”

To support Helen in her marathon challenge visit virginmoneygiving.com/helenbrownevlm

Orla’s story“When you’re only going to have such a small amount of time you want that time to be as good as it can be.”

Family story

15To donate go to shootingstarchase.org.uk/donate or call 01932 823100

Feature

Towards the end of 2016 Shooting Star Chase conducted its latest family survey, seeking views from families currently receiving support (excluding bereavement support). The results provided further evidence of the significant impact the charity has on the lives of families, while providing crucial insight to help shape our future service.

The survey asked a variety of questions, ranging from the impact their child’s condition has on aspects of family life, to views on the current service and seeking opinion on the benefit of potential service developments, such as satellite hubs. The results further highlighted the huge impact on parents caring for a child with a life-limiting condition. Responding to a question about how their child’s diagnosis impacts on various aspects of their lives, more than 90% said it had an impact on their sleep, stress, and logistics, while 80% said it made a difference to how much time they can spend with their other children. Results

also made it clear just how valuable the service is for families – for questions about specific services, scores in the top two categories (essential and very valuable) were consistently 90% or higher. As well displaying the importance of our work, the survey also identified a number of areas to explore in order to continue improving what we do. “One of the great things that stood out immediately was that people were able to be honest with us,” says Jo Cohen, Head of Care Business Management, who was instrumental in the survey. “We looked at past surveys and felt it had been pitched as an opportunity

to get lots of nice things said about us, but there wasn’t a great deal of opportunity for constructive criticism. This time we got input from across the organisation and developed it in a way that allowed people to say ‘we really like this, but that could be better’. For example, one response had a list of things a parent wanted to change, only to finish it by saying they think the service is amazing and couldn’t live without it. We appreciate that honesty because it allows us to make changes that really make a difference.

“It was also pleasing to see some of the feedback matched areas we’ve already been working on. For example, there were comments about needing to upgrade the family flats at Christopher’s, which we had already identified for the refurb project later in 2017. Families also asked for an easier bookings process, which will be achieved with the launch of our new care database in 2017.”

“Having our child safely in your care has been the most wonderful gift to us over the years.”

100% say they are treated with dignity

and respect

96%a good night’s sleep

Feature

After analysing all returned surveys, we identified four main areas in addition to specific requests, which have been formed into an action plan for 2017/18.

Parents are telling us the service is as valuable for them as it is for their child Jo: “We’ve always prided ourselves on making a difference to parents as well as the children, but this survey really hit home the extent of how much parents value the support they receive themselves. 64% of parents said the service was ‘essential’ for their child, while 76% said it was ‘essential’ for them. We are child-centred so our care primarily focuses on caring for the child with a life-limiting condition, and then offering additional services for the wider family. The results reminded us just how important we are to parents and we need to consider how we can support them in everything we do.”

Families want us to help them help othersJo: “There were lots of calls for us to facilitate support network groups, which is a natural follow-on from parents telling us how much they value the service themselves. As a result we have set up a parent carer advisory group – one at each hospice – to give a platform for parents to use their experiences to support each other. We’re also looking at how we can utilise existing groups. Rather than parents simply dropping their child off at an event, can we put something on to encourage them to stay and support each other while

the event for the children is going on?”

Families want us to maximise time on short breaks and Hospice at Home visitsJo: “Some families mentioned the length of time handover can take. It’s a really important process where parents and care staff go through the child’s care plan to ensure a safe stay. Sometimes it can take a couple of hours and when you’re going away for the weekend – something you don’t often get to do – that can be a long time. We’ll always need to maintain our outstanding safety standards but we’re looking at ways to reduce the time, such as inviting families to drop in to update care plans a few days before their stay. The new care database will help here too as one of things we have built is a section where families can read their care plans online, reducing time required on the day.”

Demand for our care service continues to growJo: “We know families would love to benefit from our service more. Our ability to deliver that is primarily dependent on being able to raise more money, but we are working hard to work out how we might achieve that with the same resources. This has helped us understand it’s not always ideal to say ‘we offer a three-hour visit and it looks like this’, which is what many providers do. As part of our action plan we have committed to move further towards a model where we co-design our service with children, parents and carers so our

service is genuinely responsive to the individual family needs.”

Communication can improveJo: “As well as the Parent Advisory Group, we are looking at all the ways that we communicate with families, including publications like the Family Fact File to consider whether there are better, more effective ways of delivering information. Our lead nurses are working on improving the handover at the end of a stay, including providing more pictures to demonstrate what children and young people have been doing. We are also reviewing our methods of communication. Traditionally we have been very mail-led but we have begun to develop a framework to decide what communication can be via email and mobile, and what should remain as letters.”

A word from Chief Executive, David Burland. “Results from the survey have confirmed again the importance of Shooting Star Chase to the families we support. Because of our reliance on voluntary donations, we know this care only happens because of our supporters. For that, I want to say thank you. We cannot make every moment count without your help.”

William, Guest Editor“My parents completed the survey and said how brilliant Shooting Star

Chase is. I totally agree – the staff are amazing, they understand me and what I’m going through, and I can just be myself with them.”

98% say the service is essential or

very valuable to me

100% say the hospices are clean

or very clean

94% say the service is essential or

very valuable to my child

99% say they are likely or extremely likely to recommend Shooting Star Chase

to a friend

Hospices this way

80%spending time with

other children

97%logistics of day-to-day activities

My child’s diagnosis has an impact on:

17To donate go to shootingstarchase.org.uk/donate or call 01932 823100

One morning in 2010, George’s parents, Nicky and Phil, found their son lying in bed awake, but unable to move or talk. Terrified, they called an ambulance and George was rushed to hospital. After a series of tests and scans, and with George now regaining speech and movement, the doctors told Phil and Nicky it was probably a severe migraine or partial seizure.

Sadly, George’s episode wasn’t a one off – it marked the start of a serious but undiagnosed condition: “Just six weeks later, George was playing in the garden and suddenly couldn’t talk again,” says Nicky. “From then on, he continued to have regular seizures where he’d go blank, and they gradually got worse over the next year. It wasn’t long before George suffered his first tonic clonic seizure where he falls down and his whole body starts jerking. It was frightening. He was in hospital for a week after that and tests showed he’d had 32 seizures in 24 hours.”

To make matters worse, George’s seizures had a significant impact on his development. “George seemed to be deteriorating cognitively,” says Phil. “He went from being really bright to struggling to learn and progress at school. We had an MRI and the results showed George has hippocampal sclerosis on the left side – meaning the seizures had irreversibly damaged parts of his brain.

“He was put on steroids and epilepsy medication to manage his seizures and prevent any more cognitive damage, but we didn’t get a proper diagnosis because the doctors didn’t know what was causing it. It was really tough – one day our son was

absolutely fine and the next he was seriously ill.”

As George’s condition worsened, the family’s community nurse suggested they get support from Shooting Star Chase, but Nicky and Phil had reservations. “We actually ignored the letter until a key worker from Shooting Star Chase called and arranged a visit. We didn’t think we needed help from somewhere like a hospice,” says Nicky. “But we went to Christopher’s in Guildford and both George and his little sister, Mia, loved everything about it – the swimming pool, the garden, the sensory room. They were in their element!”

But for Nicky, it wasn’t until George had his first two-night stay at the hospice that she changed her mind about Shooting Star Chase. “As well as his epilepsy, George has autism and high anxiety so the slightest bit of change is unnerving for him. So, for George’s first short break, Phil slept in the family flats at the hospice while I stayed at home with Mia. But George was so comfortable and at-ease at Christopher’s that he immediately felt at home and Phil felt able to leave after one night. Then I realised we needed the hospice more than we knew.”

George is now 14-years-old and the family have been supported by Shooting Star Chase for five years with services including short breaks, Hospice at Home and a range of therapies. “At the beginning there’s no way I’d leave George but now Christopher’s is the only place I know he’s safe and happy without us,” says Nicky. “The staff are brilliant and always make him feel welcome, and it’s like his second home. He can be confident and independent, and do teenager things like go to the hospice youth group, or go to restaurants and the cinema without mum and dad. He says he doesn’t feel ill when he’s there.

“Shooting Star Chase has been a lifesaver for us all. For us as parents, we’ve been able to go abroad together without worrying about

George and his safety, and I’ve also really benefited from counselling, parents’ groups and complementary therapies at Christopher’s. As a family we get to enjoy things like the Summer Fun Day at the hospice, which we base our holiday plans around because it’s such a fantastic day.”

The support from Shooting Star Chase has also made a difference to Mia, George’s sister. “Mia was only five when George had his first seizure and we think his condition and everything that goes along with it has had a real impact on her,” says Phil. “She goes to art therapy and siblings’ days, which help so much with her nervousness and stress. When we get Hospice at Home or George goes on a short break we can also spend quality time with her and do the things she wants to do.”

Nicky and Phil still don’t have a diagnosis or prognosis for George seven years on from his first seizure, which means the family are constantly having to cope with the unknown. “We know that any seizure could take him from us and he is reliant on his medication to manage his condition, not treat it,” says Nicky. “The damage from the seizures means his emotional maturity is still that of an eight-year-old but we’ve been told he may well outgrow some elements of the epilepsy and we’re hopeful. Whatever the future holds, dealing with the impact of George’s condition is made bearable because of Shooting Star Chase and we simply couldn’t function without them. They are the greatest support network anyone in our position could wish for and when I look back at my hesitation to accept help from Christopher’s I can’t believe how wrong I was.”

Family storyFamily story

George’s story“George’s condition is made bearable because of Shooting Star Chase and we simply couldn’t function without them.”

19To donate go to shootingstarchase.org.uk/donate or call 01932 823100 19

Fabulousfundraisers

Over to you

Sur rey Hills

Uni students crowdfund to buy iPad for hospiceA group of first year students at Surrey University’s Business School put their marketing skills to the test by setting up and promoting a crowdfunding project to buy an iPad for Shooting Star Chase last Christmas. The students successfully raised their £239 target to buy the iPad from the charity’s Christmas wish list, which is set up to give donors an idea of gifts appropriate for supported children to help give them a Christmas to remember.

National Free Wills NetworkWe’ve teamed up with the National Free Wills Network, a service that offers our supporters a chance to have a simple will written or updated free of charge. Carolyn Turner said: “I found using the National Free Wills Network very simple and easy and while I never felt under any pressure to leave a gift, I decided that by leaving a legacy I could help support children and families long into the future.” To find out more contact Katie on 01932 823109 or katie.wallman@shootingstarchase.org.uk

Prudential Ride London It’s one of the greatest cycling challenges in the world – and you could be part of it. With its leg-testing climbs and 100-mile route, you will get to take in the iconic sights of the capital and stunning Surrey scenery. Everyone on Team SSC will receive a technical cycling jersey, advice on training and nutrition, an invite to a training day and a fantastic fundraising pack. This year’s event is on Sunday 30th July. To find out more visit shootingstarchase.org.uk/ridelondon

The Royal Parks HalfThis iconic half marathon, on Sunday 8th October, offers runners magnificent views of some of the capital’s most well known landmarks, including Buckingham Palace, the Houses of Parliament, the London Eye, Marble Arch and the Royal Albert Hall, plus many more. Registration for Shooting Star Chase Gold Bond charity places is now open, or you can join Team SSC with your own ballot place! To find out more visit shootingstarchase.org.uk/royalparks

Michael Chell!

Guildford menswear store, Michael Chell, carried on what’s become their Christmas tradition last year raising money through a themed window display. Since 2011, the store has had a different design each year raising money in support of Shooting Star Chase. 2016 took on an emoji theme and raised £3,370 through the sale of emoji cushions, bringing the total fundraising to almost £13,000 since the project began!

Friends organise fundraiser to a tee

Supporters Nicola Atkinson and Julie Weaver raised £13,000 in November after arranging a dinner and dance at Silvermere Golf Club in Cobham. Nicola and Julie treated guests to a drinks reception, a three-course meal and a live band at the black-tie event. Guests also had the opportunity to bid on some fantastic prizes with an auction hosted by former Fulham footballer Les Strong.

In perfect company

Our wonderful corporate partners got together in London in February to allow us to say thank you for all their support. Point A Hotels and Ellis Wines kindly donated the venue and refreshments, while care staff were on hand to share how corporate support helps to make every moment count. Corporates raise almost 10% of what it costs to keep the charity going, and we would love to welcome more on board! To find out how you can help please email corporate@shootingstarchase.org.uk

A decade of support from Jack and Jill

Jack and Jill Nursery and Pre-Preparatory School in Middlesex has been supporting Shooting Star Chase since 2006 – and a recent ball in celebration of the school’s 65th anniversary raised over £7,000. This takes their total fundraising figure to almost £30,000 in ten years! A huge thank you to all the staff, children and families from Jack and Jill for their amazing continued support!

Calling all trekkersWe’re currently planning a brand new challenge event and are calling on supporters to register their interest to get all the breaking news. The event will combine the popularity of trekking with the beautiful surroundings of Surrey Hills, plus the usual first-class experience of a Shooting Star Chase event, to bring people together to raise vital funds for children with life-limiting conditions, and their families. To register your interest visit shootingstarchase.org.uk/surreyhillstrek

Bag a volunteer opportunityDo you have a few hours a week spare and fancy working in retail? We have a number of volunteer shop assistant vacancies in Surrey and south-west London, and we’re looking for awesome people to fill them! From helping to create eye-catching displays and steaming clothes, to assisting customers and using the till – there’s plenty to do and it’s a great way to meet new people. For more information visit shootingstarchase.org.uk/volunteer

Parallel LondonThe world’s first fully inclusive mass participation event is back for 2017 and we’re calling on supporters to be part of Team SSC. Parallel London takes place on Sunday 3rd September at the majestic Queen Elizabeth Olympic Park and is designed for all ages and abilities, with five distances and a free family festival after the push/run. As part of Team SSC your place in the event is free of charge, with a minimum sponsorship target of just £300. Find out more at shootingstarchase.org.uk/parallel

Ways you can make every moment count

A small selection of the amazing things you’ve done

Rugby players give ladies a night to rememberGuildford Rugby Football Club raised more than £4,000 thanks to a Ladies’ Night. The event saw women enjoy an evening of drinks, dancing, pampering and an auction to bid for fantastic prizes. Men from the club served drinks and canapes to the guests as butlers in the buff. Well done to all involved, especially the brave butlers for being good sports in the name of charity!

To donate go to shootingstarchase.org.uk/donate or call 01932 823100

Sunrise Walkand every step you take will help make every moment count for bereaved families.

Sunday 4th June 2017Starts at 4.30am – Ham House, near Richmondshootingstarchase.org.uk/sunrisewalk

Join us on our annual

ShineYour moment to

10km and 20km routes

Special offer for Shine

readers. Enter promo code

SHINE to get 20% off the registration

fee.