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Magazine

Spring/Summer 2013

Mums are amazing! Join us in celebrating mothers

“Rainbow Trust is on this journey with us” How Rainbow Trust helps one family cope

60 seconds with... ...a Family Support Worker How to have difficult conversations

See who’s supporting Rainbow Trust Are you a fundraising hero?


Welcome to the Rainbow Trust Magazine

Welcome Many generous Helping Hands Life is all about being with the people you love and care about, but with so much going on it can be difficult to give everyone the time and attention they deserve. So with spring and summer on their way and as the school holidays approach, make sure you set aside time to have fun with the whole family. Why not get together at one of our events or organise your own fundraising activity, just as our Fundraising Superstars (opposite) have?

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e asked you to help us make sure families had the help they needed at Christmas – and you responded very generously. Towards the end of last year, Rainbow Trust supporters received a special request from Karen Beecroft, mum to Chloe (pictured right) – a brave little girl who had a tumour growing behind her eye.

You can see how your donations help by reading stories such as the one about our gorgeous cover girl, Loren Henderson, whose condition puzzled doctors, or those of Zak and Clare – two of our Family Support Workers who provide much needed support to sick children and their families.

Chloe’s tumour was diagnosed in 2010 when she was just five years old.

From all of us here at Rainbow Trust, thank you for your ongoing support. We couldn’t do it without you.

Rainbow Trust was able to help the Beecroft family by driving them to Chloe’s hospital appointments and making sure the family was able to spend as much time together as possible.

Chief Executive

Her parents had the agonising choice of surgery to remove her eye or chemotherapy to shrink the tumour.

Karen asked if you would donate money to help fund our Family Support Workers so they could help more families spend Christmas together instead of split between hospital and home. You have so far donated over £11,000 – and the gifts are still coming in. Thank you to everyone who made a contribution. Your generosity will enable us to provide 500 hours of hospital and home support. When we recently caught up with Karen, she said Chloe was doing well. As a treat for getting through the treatment she is taking her to the Justin Bieber concert and if her next scan is clear the family will be able to go for a caravan holiday in the summer.

Read more of Chloe’s story in our Impact Report at rainbowtrust.org.uk/impactreport

Celebwatch I Comedian, Steve Coogan with Iris

t has been a star-studded few months at Rainbow Trust with celebrities coming out in force to support our work. In September, the comedian and actor Steve Coogan joined five-year-old Iris and other Rainbow Trust children on the BGC Partners trading floor where they picked up the phone and conducted transactions with clients as part of BGC’s charity day. Actress Wendi Peters and TV presenter John Scott were among the 300 participants who helped us raise almost £30,000 for The Big Hour campaign in October. The Big Hour is our biggest annual event where we ask people across the country to enjoy some baking

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fun and to celebrate the extra hour we gain when the clocks go back. This raises vital funds and highlights just how precious time is for the families we support. Also in October, Rainbow Trust benefited from a Van Morrison concert. Hundreds of fans packed out Grosvenor House on Park Lane in London to hear the music legend sing, raising £59,500 towards our work. BBC Sports presenter Clare Balding brilliantly hosted our Christmas Carol Concert at the stunning St Paul’s Church in Knightsbridge, London, in December. Guests were also treated to readings by actors Rupert Penry-Jones, Sarah Alexander, Robert Portal and the TV presenter and producer, Andi Peters, as well as a wonderful selection of carols, mulled wine and mince pies.


Small actions, big impact

Fashion focus If you like to look good why not join us at our exclusive fashion event at The Savoy in London on 18 March 2013? Sip champagne and savour the flavour of the hotel’s signature cakes and pastries while enjoying a glamourous fashion show hosted by ITV newsreader, Mary Nightingale, Marie Claire’s Trish Halpin, catwalk king John Walford and featuring models from the world famous modelling agency, Storm. There will also be the opportunity to buy and win some fantastic clothing and accessories. Tickets to Trust in Fashion are £100 each – but be quick, this is an exclusive event with

Fundraising Superstars

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very week, people across the country donate their time and energy to raising valuable funds for our work. We think they’re amazing and know you will too! Here’s a few of the highlights. In August, father of two from Kent, Mark Sheridan braved the cold waters of Loch Lomond for an exhausting 14 hours and 44 minutes swim wearing just his trunks to raise £6,800. The Loch, at 21.6 miles, is the largest in Scotland by surface area. Rumour has it completing this swim is harder than the swim across the English Channel! Children at Tadworth Primary School in Surrey raised a delicious £300 for The Big Hour campaign in October. More than 350 pupils rolled up their sleeves, put on their aprons and raided their parents’ food cupboards to bake and decorate hundreds of cupcakes, which they sold to family and friends. Penny and Peter Jay established “The Ted Jay Appeal” in memory of their teenage son Ted who died in April last year. After the fantastic success of their sell-out North West Hunks Calendar, their next venture is the Ted Jay Testimonial Rugby Match and Family Day. All the money raised will help fund the team of Family Support Workers in the Manchester area. To find out more about the role of our Family Support Workers, see pages 4 and 7.

just a few seats available. If you can’t make the event but are still keen to pick up some fashion bargains then head to the Rainbow Trust shops in Leatherhead and Cheam, Surrey. Our shops are treasure troves of designer and high street clothing, much of which has been donated by the fashion industry and retailers themselves. From stylish evening dresses to casual day wear to shoes and accessories, Rainbow Trust shops are the ideal place to find the perfect outfit for you and your pocket.

Visit rainbowtrust.org.uk/ trustinfashion

With a little help from our friends Please join us in making a difference to families who have a child with a life threatening or terminal illness. If it wasn’t for our wonderful supporters we couldn’t run the services that so many people rely upon. For example, it costs £22 to provide an hour of support. There are lots of ways in which you can help, from setting up a regular direct debit to taking part in sporting and challenge events, such as climbing Mount Kilimanjaro in Africa. Or why not set up a Friends of Rainbow Trust group? These are groups of people in the community who come together to organise fundraising events. It’s a great way to support families while having fun with your friends!

Find out more at rainbowtrust. org.uk/get_involved

I Love Claims, an organisation that supports the motor claims industry, completed a torch relay around the UK raising more than £61,400. The torch travelled from business to business, stopping at car hire companies, accident repair centres and solicitors’ offices along the way. Some 89 events were held, including corporate dress down days, bake sales, sweepstakes, sponsored walks and even a tandem skydive! 3


Mother’s Day Special

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Celebrating MOTHERS

e love mums. We love their selfless, thankless and endless commitment to their own family. We know it is not always easy and at Rainbow Trust we try and support them as much as we can.

She needn’t have worried. She has loved every minute: “I find the children inspirational. The way they get through things is humbling and uplifting.”

Clare’s job is to offer families the support they need to cope with their child’s illness. This might mean listening to worries and sharing advice, spending time with siblings so parents can have a much needed break, or providing transport services to and from appointments. “Some families would have to take three buses to get to hospital,” she explains. “Getting there for 10am would be an ordeal – they would have to set off the day before!”

We also really appreciate the support they give to us – like our three mums here, who have all contributed to our work in their own special ways.

I find the children inspirational.

The job can often mean long hours and late nights, especially if a child has gone for surgery. Clare will stay with the family throughout the whole time they are in the hospital and she never loses her enthusiasm for the job.

When former teacher and mother of three, Clare Beasley first became a Family Support Worker in our Durham team, she was a little concerned about how she would feel seeing children in hospital “with pipes coming out of them.”

“The support we provide when people are at their lowest ebb is invaluable and you can see the difference we make immediately,” she adds. “I never get that Monday morning feeling of dread, which makes me feel very lucky indeed!”

So to Clare, Vanda and Liz, and all the thousands of other mums like you – thank you. You’re amazing!

It’s thanks to mum I found Rainbow Trust.

It was when volunteer Vanda Smailes was looking for a new challenge that she found Rainbow Trust. That was two years ago and she has never looked back. As well as it being a meaningful way to spend her time and use her skills, she could also relate to what the families were going through: her own child Jonathon, who had Down’s Syndrome, died from a congenital heart defect when he was 18 months old. “It was devastating,” Vanda reflects, adding that the situation was made harder due to her daughter Fiona being just three years old at the time. “You just don’t know what to do with the other child while all of that is going on. Having to take them to hospital appointments when you are trying to concentrate on what’s happening can be a nightmare. I could really have done with the help of Rainbow Trust but it wasn’t available back then.” Vanda volunteers two days a week, supporting the HR team. “I really enjoy it. You make new friends and get a different view of volunteering. It’s not all give, it’s about receiving as well,” she says.

How to... have difficult conversations There’s never a good time to discuss illness or death, but there are ways to ensure children feel they can ask questions and cope with bad news. Anne Harris, director of care services at Rainbow Trust gives some advice here on having difficult conversations. You are driving home, concentrating on the road, when your child suddenly asks “Am I going to die?” This is not a question any parent will ever want to hear but if your child has a serious illness they may ask it 4

when you are least prepared. So what is the best way to respond? The first difficult conversation you may have is when your child becomes sick. “A parent’s instinct is to protect their children from anything bad,” says Anne. “But children have an immense capability to cope. We advise families to be honest and to give as full a picture as possible.” Whatever conversation you are having, it is vital to let your child ask as many questions as they want. “No-one has all the answers so if you don’t know then say so. Tell them you’ll try and find out. And don’t make promises you can’t keep,” suggests Anne. It also helps to find a comfortable time and


Family matters Vanda has also helped recruit another volunteer – her daughter, Fiona, 24, who helps with fundraising and finance tasks. “The roles mum and I have show there are loads of ways to support Rainbow Trust as well as working directly with families or donating money. I love it here. Everyone is very friendly and professional; they all care deeply about what they do,” says Fiona.

New Shop

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Liz does such a fantastic job - I can’t thank her enough. In early 2011, when Liz and Grant Dale were first told their ninemonth-old daughter had a rare type of cancer they couldn’t believe what they were hearing. The cancer, which is on Francesca’s left cheek, had grown around the optic nerve and the main artery meaning surgery was out of the question. Instead, they had to start treatment not knowing when it would finish. “Initially we were coping – we thought it would be over in six months,” reflects Liz. “But as time went on, Grant could take less and less time off work and I became the sole carer. It was at this point that Rainbow Trust became more and more important to us.”

Family Support Worker Clare Beasley with fiveyear-old Maryam Matan

Volunteers Fiona and Vanda Smailes

As a consequence of Francesca’s extensive treatment, Liz has spent many hours, days and weeks in hospitals waiting for, and attending, appointments. In addition, she has given up her work and social life to care full-time for her daughter. “We can’t go out anywhere – not just because of the infection risk but because Francesca has special lines which go into her chest and blood supply, which all have to be kept safe. Rainbow Trust has been invaluable,” explains Liz. “Our support worker, Nicki, is fantastic. Francesca needs round the clock care and because I can trust Nicki to look after her or my other daughter I get a proper break. I also appreciate having adult company as well as another person to help with the stressful hospital visits.” Despite all of the pressures of family life, Liz still found time last October to support Rainbow Trust by organising cake sales with family and ex-colleagues for The Big Hour fundraising event. “We raised over £3,000. I was thrilled to be able to support Rainbow Trust,” she says. Liz’s dedication to her family and others around her has not gone unnoticed – not least by her husband, Grant. “I don’t know how she does it. She’s given up her own life to care for our daughter and somehow manages to look after the rest of us as well,” he says. “She does such a fantastic job – I can’t thank her enough.”

Liz Dale and daughter Francesca

Please help us help more families. Donate today. place to talk. “I think it’s no coincidence children often instigate difficult conversations in the car when adults can’t look at them,” says Anne. “Children think they can catch their parents off guard. Equally don’t bamboozle them with big words or euphemisms,” she adds, emphasising “how it’s important not to talk about people “going to sleep” or you’ll never get a child back in to bed!” Parents naturally never want to be in the position of having to tell their children they’re going to die and Rainbow Trust’s philosophy is ‘keeping hope alive but being realistic’. However, if a child asks if they’re going to

die, Anne suggests finding out what the child already knows and then following their lead by being honest. “This conversation might be something like, ‘You know we said you’d have treatment to try and make you better. Well, although everybody tried really hard, the treatment hasn’t worked. Sometimes when people can’t get better it means they’re too poorly to be able to stay alive.’,” It is also important not to forget siblings. “Parents can underestimate a brother or sister’s belief that they caused the illness,” says Anne. “You should make it clear that’s not the case.”

“Finally, it helps to let everyone know it is OK to be upset and to express your own sadness,” advises Anne: “Whatever conversation you have, you need to let children know that they’re loved and that you will always, always love them – whatever happens.” Tips for difficult conversations Be open and approachable Choose a comfortable place and take your time Check exactly what the child wants to know and let them ask lots of questions Be clear, acknowledge feelings and give the child time to understand

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Loren’s Story

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wo-year-old Loren Henderson has spent much of her short life in and out of hospital while doctors try to diagnose her life-limiting illness. Here, her mum Colette explains how Rainbow Trust supports all the family. “We didn’t see Loren until five hours after she was born. We were told she was stable, but to prepare ourselves for the worst. She was in an incubator with wires coming out of her. It was a real shock for us as parents – she looked very frightening and totally reliant on machines. I missed my first cuddle and was very afraid to pick her up as it would cause the machine alarms to go off. I have five other children, so thought Loren would be as healthy as they are. I’d had a normal pregnancy but one day I woke early and couldn’t feel any movements so the hospital told us to come in. Everything was a mess from that moment on. It took nine hours to get a drip to start contractions and once labour was under way I could feel that something was wrong. The midwife was telling me to push and I didn’t want to. When I did, Loren flew out. It was very quick. She was very cold, very stiff and not breathing. Everyone rushed into the room and Loren was taken away.

swallow her own saliva. Initially she was fed via a tube through her nose but now we use a special feeding pump which pumps food through a new tube straight into her stomach. She needs constant supervision when she is having a feed. When we were offered Rainbow Trust’s help, I was a little defensive. It took me a long time to realise that I needed help. Other services focus on Loren, but Rainbow Trust supports everyone. My husband Mark and I can really talk to Carla, our Family Support Worker, and it’s great to have someone who will take the kids if you’re having a bad day.

We were in hospital for 11 days. They did tests on all Loren’s organs and took X-rays. Her condition is still undiagnosed now. She’s life-limited but it’s very complex and doctors don’t have all the answers. When Loren eventually came home, we were still in and out of hospital. I was trying to breastfeed, but she’s got a small jaw and the muscles in her throat have collapsed so she can’t even

If we go out we have to plan everything because we have got Loren’s wheelchair. With babies you’re carrying nappies, bottles, bibs, wipes; on top of that we’ve got Loren’s normal feeding equipment which consists of a feeding pump, bag and tube, sterile water, syringes in three separate sizes, suction pump, four lots of medication, feed and a container for the pump.

She was very cold, very stiff and not breathing.

We stay in so much because of Loren that when Carla comes round and takes the kids out it takes away some of the guilt I feel. She sometimes takes our youngest son Theo to the Rainbow Trust drop in group or out walking just so I can have an hour to myself, or she does things with our daughter Lydia, such as taking her for an ice cream or for a walk. I feel split between Loren and the other children but Carla can have individual time with each one, which makes the world of difference. Without Carla we wouldn’t have any sense of being a “normal family” whether at home or out and about. There is not one of us she doesn’t support or help. There was a disability day at the local zoo which Carla made us aware of and helped us get tickets for; she also encouraged our daughter Rhiannon to join a Young Carers’ group. She doesn’t ask questions, she just listens. She will hear us talking about how we haven’t had a holiday in years and then will get forms to apply for one. Every bank holiday Carla makes sure the kids have something to talk about at school.

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Support for all

60 seconds with... a Family Support Worker

Family Support Worker Zak Miah tells us why he loves his job at Rainbow Trust, and how his role helps the whole family. What does your job involve? If we’re out, she knows the times that Loren needs a feed and will find somewhere to sit and help me. When Carla takes us out, she’s the one watching the clock and monitoring feeds. We don’t even have to ask her to help, she just does it before you even know. It allows me to switch from being a carer to being a mum, which is priceless. Loren has up to 18 appointments each week. Carla has come to vision assessments and plastic surgery appointments, has learnt resuscitation and is trained to manage Loren’s tubes. Knowing exactly what to do if Loren gets into difficulties or something happens to her feeding equipment will save her life.

Carla allows me to switch from being a carer to being a mum, which is priceless.

We are very open with our other children and nothing is kept from them. We tell them we are going to the hospital and what is happening there, and when we come home we try and give them some answers to how it went and what it means. We are pretty open with everything because we have to be. Rainbow Trust’s drop in group has been great for the children and wonderful for us. We all use it. We often do art and crafts which Loren loves – there’s so much to keep the children occupied. They also have a sensory room where we can lie with Loren and just enjoy the experience. I can’t do that anywhere else. Nobody knows what Loren’s future will be. We try to be as positive as possible while also being prepared for the worst. But we are so lucky to have Carla. It feels like she’s on this journey with us, not just to tick boxes but to actually make a difference.”

If you would like to help Rainbow Trust help more children like Loren, please make a donation at rainbowtrust.org.uk/Donate

It’s a very varied role which is different everyday; for example today I have transported a family to the hospital. Their 10-year-old boy has brain cancer and he needs to attend hospital regularly. The family doesn’t have a car so without our support the journey using public transport to and from hospital, with a child whose immune system is very vulnerable, would be dangerous and stressful.

How else do you help?

I also provide support to brothers and sisters of a sick child. I will keep them entertained while parents speak to the doctor. This is important because parents can then give their undivided attention to what the doctor is advising about their child.

So you support the whole family?

Yes, we help everyone. So if another family member has an urgent appointment, or the brothers and sisters need looking after, we try to step in wherever possible to provide any help that gives valuable time to the parent.

Do you also help at home?

We often entertain the children so mum can have a break. It might only be for a few hours but it makes a huge difference as they know their son or daughter is with someone who understands, can look after them and makes the child feel comfortable.

What’s the hardest part of your job?

The hardest part is when a child dies, especially if it’s earlier than expected. Some families want to get back to normal as soon as possible whereas others take longer to deal with it. It’s about getting that balance and finding out what each person needs. We spend a lot of time with the family in bereavement. As we have known their child, they often find it easy to talk to us about them.

Why do you love your job?

I love knowing that even the smallest things, like driving a family somewhere, really makes a difference and that everyone is totally there for the children.

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Did

YOU KNOW? We had a fantastic response to our supporter questionnaire, which told us how and why you support Rainbow Trust and what you think about the work we do. We now know what we need to do more of and where we can make some improvements. We received high scores from supporters who feel they are appreciated and that their donations make a difference.

You said you wanted more information on events to get involved in so we have delivered! Check out our website and go to the ‘Events’ tab for all the latest information.

Register for our e-newsletter so you never miss out on the latest Rainbow Trust news and events! Sign up today on our homepage rainbowtrust.org.uk or email laura.dyer@rainbowtrust.org.uk

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Facts and figures... ...last year, Rainbow Trust Children’s Charity was able to support families in lots of different ways thanks to the donations from supporters like you. Just a few of our achievements include:

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More info!

For more information about our work and to read more about Rainbow Trust, you can view a copy of our Impact Report here, rainbowtrust.org.uk/impactreport or request a copy from our office.

Don’t forget!

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a 24-hour service, providing comfort to families when they need it

dness en the kin tt o rg fo r e gave my I have nev bow Trust in a R e v lo had and little sister y m n e h w emories family ildhood m h c y M . ia Leukaem rust. Rainbow T are full of ! amazing You are all Head Office 6 Cleeve Court, Cleeve Road, Leatherhead, Surrey KT22 7UD T: 01372 363438 North East Office Forster House, Forster Business Centre, Finchale Road, Newton Hall, Durham DH1 5HL T: 0191 386 4400 Photography: Andy Newbold, Ruth Shutt, Clive Reedman and Dean Grear

rachel @RTCC amazing support from lovely workers for sick children and their siblings. Helped us through tough times.

rainbowtrust.org.uk North West Office Office 8, Tameside House, Tameside Business Park, Windmill Lane, Denton M34 3QS T: 0161 336 4767 E: enquiries@rainbowtrust.org.uk W: rainbowtrust.org.uk Twitter: @RainbowTrustCC Facebook: facebook.com/RainbowTrust Registered Charity No. 1070532.

Head Office: 6 Cleeve Court, Cleeve Road Leatherhead, Surrey, KT22 7UD Tel: 01372 363438 charlotte.akinola@rainbowtrust.org.uk Registered Charity Number 1070532 North East Office, Durham


Rainbow Trust Magazine Spring/Summer 2013