ABOUT US | 1

OU

R Y

EAR

20

14/1

5

1001

SMA

LL

THIN

GS

This is my fi rst year as Chairman of Rainbow Trust, having been a Trustee for a number of years. I am committed to continuing strong governance and transparency to ensure we continue to help as many families as possible.

I have always been immensely impressed by the dedication of Rainbow Trust’s supporters, which last year, culminated in Rainbow Trust raising a fantastic £5.1m to help families when they need it most. Together with our supporters, we seek to achieve our mission, which is to help every family who has a child with a life threatening or terminal illness.

In 2014/15, our team grew even stronger, we launched a specialist Neonatal Support programme and as a result, were able to support additional families with a baby in a neonatal unit. Our Family Support

Workers worked with over 1,900 families, making every eff ort to make these families’ lives, just a little bit easier.

Here is the story of how, thanks to your support, the Rainbow Trust team has helped so many families.

Mark Cunningham, Chairman

Rainbow Trust is the leading charity in England providing bespoke emotional and practical support direct to families who have a seriously ill child.

There is no other organisation that provides the range of services that we do. Our Family Support Workers care for the whole family; from their child’s diagnosis, during treatment and, if needed, through bereavement and beyond.

In 2014/15, we achieved many milestones and extended services, thanks to our supporters, 350 amazing volunteers and committed staff . Our nine teams in Central London, County Durham, Cumbria,

Essex, Manchester, Southampton, Surrey, Swindon and West London supported 1,958 families – 16% more than last year.

Following a successful pilot of our professional and independent Neonatal Care Service at Chelsea and Westminster Hospital in London, our fi rst Neonatal Support Worker was appointed, and supported 37 families in just one year.

We launched new drop-in groups across the country, and developed new groups for parents and bereaved siblings, to give opportunities for friendship, support and respite.

We extended our Hospital In-Reach service to the Cumbria, Durham Manchester and Swindon care teams. The In-Reach service provides important information, advocacy and sign posting to families during their stay in hospital, who may not require the on-going support of our Family Support Workers. Being told your child is seriously ill can be an overwhelming experience, this service provides light-touch support, at a time when families can need it most.

MAKING A DIFFERENCE

INTRODUCTION | 3

Find out more at rainbowtrust.org.uk

When asked what a Family Support Worker does for their family, people tell us

“It’s 1001 things - I can’t put it into words”. Each family is unique, so the support we off er, is diff erent for each one.

When a family is told their child has a life threatening or terminal illness, their life is shattered into a million little pieces. The life they lived before, ends in that moment, and they enter a new and unknown world, fi lled with grief, fear, turmoil and even guilt.

1001 SMALL THINGS

Our support is fl exible and understanding. We support families in whatever way they need help. Our Family Support Workers, work with families to help families cope in extreme and uncertain situations, so that they do not have to cope alone.

Some families are supported a number of times each week, some call us as and when they feel in need, and everything in between. From supporting in the home, at hospital when children receive treatment, to being there for the whole family if a child dies.

Here are just some of the ways we support families:

Parents juggle dozens of appointments, organise transport, childcare and logistics.

MON

TUES

WED

THURS

FRI

SAT

SUN

MON

TUES

WED

THURS

FRI

SAT

SUN

MON

HOME SUPPORT | 5

HOME LIFEEven after a diagnosis, life at home continues. Children need to be fed and entertained, clothes need to be washed, and for most families, work commitments remain. We support families in their home to help them through the ups and the downs. Life can sometimes feel a bit overwhelming for families,

trying to juggle a calendar packed full of various appointments, work, and taking care of other children. Our Family Support Workers work with the whole family; parents, grandparents, the sick child and siblings, providing support from play, homework, shopping, cooking, to someone to talk to.

I remember that fi rst day, I didn’t know what to do with myself. Sarah, my Family Support Worker, told me to go shopping – I was standing in the supermarket when I realised I had not been out on my own for weeks. Sarah gave me that breathing space that I hadn’t had since Emily was diagnosed.

Kate, Emily’s mum. At eight year’s old, Emily was diagnosed with leukaemia.

“

“MON

TUES

WED

THURS

FRI

SAT

SUN

MON

TUES

WED

THURS

FRI

SAT

SUN

MON

Sarah, Family Support Worker, spending quality time with Emily. Our support has made a huge diff erence to Kate, Emily’s mum. She said: “With Sarah, I feel like a load of bricks has been lifted off of my shoulders. I can’t thank Rainbow Trust enough”.

10,144 HOURS OF HOME SUPPORT

ON THE MOVE

PPAY

HERE

Harvey was three months old when he was diagnosed with a tumour on his knee. Anna, his mum, had to take him to London for treatment, using public transport, and standing in lifts, squashed between people coughing and breathing all over her sick baby.

Jayne, a Family Support Worker, began supporting the family. She collected them from their home, and drove them to Harvey’s hospital appointments, to take away as much of the unnecessary stress as possible.

For many families with a terminally ill child, going anywhere can be a big ordeal, especially if they have to contend with; more than one child’s needs, important medical equipment, traffic and parking.

Many families rely on Rainbow Trust for transport to and from hospital, as well as school drop-offs, and outings. Our Family Support Workers relieve the stress of organising transport, give time for reflection, discussion, or just time for parents to close their eyes and prepare for what’s ahead.

TRANSPORT | 7

I tried catching the train and tube, but it just wasn’t safe for Harvey – he was so prone to infection, it felt so wrong. I tried driving up to London, but the journey was so stressful, so when Jayne started supporting us and could drive us up to London, it meant I had one less thing to worry about, it was a huge help.Anna, Harvey’s mum. Harvey was diagnosed with a cancerous tumour on his knee at three months old and underwent eight months of aggressive chemotherapy.

“

“

1001SMALL THINGS

Becky, Leo’s mum, discusses her son’s hospital appointment as Family Support Worker, Nicki drives them to the hospital.

WE RECEIVED

692 NEW REFERRALS LAST YEAR

Our Family Support Workers take some of the pressure off families when they are in hospital. Whether it is playing with the sick child and siblings, attending an important appointment with parents to help absorb diffi cult information, or giving parents a break from sitting at a child’s bedside. It is these small things, that make a big diff erence on diffi cult days.

LIFE IN HOSPITAL For many of the parents we support,

hospital becomes a second home. They juggle stressful, and sometimes life changing appointments, watch their children receive drugs they can’t even pronounce, and rarely leave the hospital grounds. Often, just giving mum or dad an hour or two to themselves, can mean they feel able to face what is ahead. They can get some much needed sleep, some fresh air, or just sit quietly with their thoughts, knowing that their child is being cared for and entertained by our Family Support Workers.Anne Harris, Director of Care.

“

“ Cleo was born with

half a heart and has already undergone a number of open heart surgeries. She attends numerous hospital appointments with Jo, her mum. Nicki, a Family Support Worker,

supports Jo in hospital by looking after Cleo while Jo speaks to doctors. She also keeps Jo company while Cleo is in treatment or surgery. She is someone to lean on for support and advice at this harrowing time.

88%

HOSPITAL SUPPORT | 9

Being confi ned to a hospital ward, or sometimes just one room, can be stifl ing. Family Support Workers give parents respite and entertain children and siblings whilst in hospital.

Parents who haven’t found themselves in similar situations, cannot appreciate the dilemma of having a very sick child, confi ned to a hospital ward. Despite the parent’s need to get away from it all, there is a terrifying fear, of leaving their sick child. I trusted Vicky from the moment we met. Natalie, Dominic’s mum. Dominic was diagnosed with a cancerous mass on his brain at just 10 weeks old.

“

“of children referred to Rainbow Trust are 10 years or younger

A life threatening or terminal illness affects the entire family. For many siblings, the life they once knew is shattered. Their routines, change frequently, parents can seem distracted or distant and their fears and emotions can often feel overwhelming.

Many siblings can find the sudden lack of structure and routine unsettling. Having someone who helps maintain a routine, makes sure homework is done, hobbies are given time, and siblings are given a safe outlet for their hopes and fears helps families feel in control and more settled.

LIFE AS A SIBLING OF A SICK CHILD

1001SMALL THINGS

We have dedicated sibling groups operating in five regions in England.

As Hannah’s baby brother had open heart surgery, she watched her mum and dad struggling to cope with the possibility that he might die. Her mum, who had been her constant, was drowning in sorrow until Annalie, a Family Support Worker, began supporting the family. Annalie saw that Hannah was exceptionally angry, and was not coping with the situation. She spent time with her and helped her open up and express the feelings which were overwhelming her. Having someone you feel comfortable talking openly with, can mean the difference between coping, or not. For many siblings, their Family Support Worker is like a friend, someone they trust and who they know will listen without judging.

ABOUT US | 11HOSPITAL SUPPORT | 11SIBLING SUPPORT | 11

Before Rainbow Trust, it was really hard, I never got a break, and had no time out - plus my other children weren’t getting the attention they needed. It’s hard to give your sole attention to your other children, when so much of it is focused on your sick child.Charlie, Emma’s mum. Emma was diagnosed with a Wilms tumour, a cancer that affects the kidneys, at the age of four.

“

“Siblings of seriously ill children are catapulted into uncertainty and change. Dedicated Family Support Workers spend one on one time with siblings to help retain a sense of balance and normality.

= 2,958 hours of sibling

support+

No parent expects to outlive their child, but for many of the families we support, this is a real possibility. Our Family Support Workers help families come to terms with a child’s diagnosis, discuss options for end of life care, help families make funeral plans, and are there for them during bereavement.

For many families, having choice is key. They have been out of control for so much of their child’s illness, saying goodbye to their child should be done in a way that they feel is right for them, and for their family. Family Support Workers spend time with families, discussing what their options are, and help them make their decisions a reality.

Our Family Support Workers are there for a family for as long as they are needed.

FOR AS LONG AS NEEDED

When Jack, one of Marie’s five year old twins died, she opened up to Dawn, a Family Support Worker, about what she wanted to do for Jack’s funeral. Dawn was there to offer advice, support and guidance, and

to reassure Marie that what she wanted to do for Jack, was right for her and her family. Having someone to discuss these details with, when you are in the grip of grief, can be reassuring, and can make the family feel like they are not alone.

Arlene Honeyman, Head of Care Strategic Development at Rainbow Trust:

Having choice at the end of your child’s life is so important. Some families want to bring their child home to die, surrounded by familiar possessions, and family. Having choice, empowers a family, and can help with the grieving process. We advocate choice at every stage of a child’s illness.

“ “

ABOUT US | 13BEREAVEMENT | 13

1001SMALL THINGS

This may be Lisa’s last Christmas. So our time together now, is all about making memories, and helping her to do fun things with her family to create those special moments the family will remember.Amanda, Family Support Worker.

“

“

Our Family Support Workers

gave1,009 hours

of

bereavement

support

OURACCOUNTS

TOTAL INCOME

£5.1 million

HOW WE RAISED OUR MONEY 2014/15

CORPORATE £1,568,209

INDIV

IDUAL SUPPORT AND LEGACIES £930,048

MAJOR DONOR £734,108

REGIONAL £715,305

TRUSTS £629,925

STA

TUTO

RY £155,445

TRADING £308,261

OUR ACCOUNTS | 15

INCOME AND EXPENDITURE

Summarised accountsStatement of Financial Activities for the year ended 30 June 2015

Income 2014/15 2013/14Grants and donations £2,864,245 £2,648,246Legacies £316,940 £182,801Fundraising events and commercial activities £1,704,671 £1,641,683Statutory income £155,445 £153,929Investment income £26,579 £25, 897

TOTAL INCOME £5,067,880 £4,652,556

Expenditure 2014/15 2013/14Care services to families £3,179,167 £2,933,458Fundraising costs: Generating fundraising income £954,839 £887,092Fundraising events and commercial activities £890,866 £768,720Donor acquisition £62,162 £143,900Governance costs £25,163 £16,881

TOTAL EXPENDITURE £5,112,197 £4,750,051

Net incoming (outgoing) resources before transfers (£44,317) (£97,495)

This is an overview of our income and expenditure in 2014/15. It’s taken from our audited Annual Report and Accounts, which you can request from us by calling 01372 363438, or emailing info@rainbowtrust.org.uk

OUR GOALSA BRIGHT FUTURE

OUR GOALS | 17

Since Rainbow Trust was founded in 1986, we have come a long way. As we approach our 30th Anniversary next year, we are more ambitious and determined than ever to reach our goal - that every family who has a life threatened or terminally ill child, should have access to our support, if they need it.

2015/16 is a milestone year at Rainbow Trust. We have big plans that will allow us to extend the range and scope of the services we offer families, specifically with regards to our Neonatal Support, Hospital In-Reach and bereavement services.

We are single minded in achieving these goals, and in order to do more for more families, we need to raise more money.

To keep updated on all our plans, sign up for our monthly e-news at rainbowtrust.org.uk

OUR CHIEF EXECUTIVE HEATHER WOOD LOOKS TO THE FUTURE

1. Support more families nationwide

2. Fund and recruit more Family Support Workers

3. Strengthen partnership working

4. Build our Volunteer Support Worker team

5. Expand our Neonatal Support service

6. Develop our dedicated Sibling Support initiative

7. Highlight the importance of social palliative care

8. Give more family support online

9. Continue to manage our charity as effectively and efficiently as possible.

OUR GOALS

OUR AMAZINGSUPPORTERS

6.

1. 300 fun runners of all ages, got showered in paint, at our fi rst ever Colour5k 2. A glamorous afternoon of high-end fashion, raised £64,000 at Trust in Fashion, our annual fl agship event 3. 91 cyclists proudly joined the colourful Rainbow Trust team for RideLondon-Surrey 100 4. Chief Executive, Heather Wood, bravely shaved off her hair and raised £8,905 5. TV broadcaster and Patron, Mary Nightingale, fronted the Radio 4 Lifeline appeal, raising £12,000 6. Supporters joined our Big Hour campaign and put every minute of their extra hour when the clocks went back to good use 7. Millions watched Sean, our Family Support Worker from Manchester, when he featured on BBC Children in Need 8. We turned out in force to celebrate and cheer on our amazing team of 46 London Marathon runners.

6.

A Sunday Times Top 100 Best Not-For-Profi t Organisations to Work For.

5. 6.

7.

SUPPORTER THANKS | 19

5.

Pic of Mary used in mag

1. 2. 3.

4.

8.

CORPORATES Our corporate partners took on their own challenges throughout the year to support us. 2014/15, saw the end of our Charity of the Year partnership with Deutsche Bank, which raised £745,392 to help families in need. ILC staff supported us in many ways, from hosting networking lunches, to taking part in the AGS/HBC Gumball Rally, raising an incredible £91,845. World Duty Free raised £59,862, John Lewis sold Christmas cards raising over £38,000, and amazing eBay for Charity customers helped raise £21,935 from two ‘give at checkout’ weeks.

EVENTERS Supporters ran, cycled and leapt their way to raise a staggering £642,292 this year. This year saw our biggest team ever run the BUPA Great North Run, with 99 people hitting the streets of Newcastle. Together, they raised a fantastic £36,684.71. Composer and Rainbow Trust dad, Will Todd, hosted a ‘Come and Sing’ event in London. This saw over 500 singers join together to perform Mass in Blue, Will’s renowned jazz setting, of the Latin Mass. The event raised £20,000. Our loyal committees, friends and volunteers helped us raise £64,000 at our annual Trust in Fashion event at The Savoy, and our exclusive Windsor Race Night raised a fantastic £234,000.

VOLUNTEERSA special thank you to all our fantastic volunteers who generously give their time, and share their skills, to help us reach our goals. This year, we had 350 volunteers donate 34,687 hours of support. Using the living wage, this equates to an incredible £272,293 of donated time.

WITH SPECIAL THANKS TO...

THANK YOU | 21

INDIVIDUALS This year, thousands of donors made regular gifts and supported our appeals. Ceci Sutcliffe held a collection at her school and raised £830. Richard Revell ran the Marathon des Sables, raising a phenomenal £86,000. Supporter Donna Dyer and her committee raised nearly £10,000 with ‘North Hampshire’s Little Gems’ - a concierge style book recommending local businesses.

TRUSTSThe support we receive from foundations and grant-giving trusts, is vital. This year, we launched our Neonatal pilot thanks to the generosity of The Sackler Trust, The Childwick Trust and The Rayne Foundation. This pilot helped 37 families with a baby in intensive care in its first year. BBC Children in Need continues to be committed to funding a Family Support Worker in Manchester.

Thanks to you, we raised a record £5.1m this year, to help families when they need it most. Whether you jumped out of a plane, ran a marathon, dropped your loose change in a collection tin, or set up a monthly direct debit - you made a huge difference to us and the families we support. We exist because of you. Thank you!

THANK YOU

WE’D LIKE TO THANK

President • The Hon Richard Stanley • Trustees Tim Bunting • Mark Cunningham (Chair) • Gordon Tempest-Hay (resigned) • Dr Jonathan Rabbs • Mark Richardson • Fiona Smith • Oliver Stanley • Michael Wainwright • Mrs Celia Woollett • Patrons • Sir Hugh Blackett • Sue Cook • Annabel Croft • Ashley Davies • The Hon Mrs James Dawnay • Lady Fellowes of West Staff ord • Lord Fellowes of West Staff ord • Lady Glover • Jack Gratton • Trish Halpin • Austin Healey • Michael Howard • Mrs Andrew Lukas • Aled Miles • Mary Nightingale • Pauline Obee MBE • The Countess of Perth • Lord Redesdale • Lady Robson • Mrs Robert Ropner DL • Mrs James Russell • Mrs Ben Sangster • Mrs John Salkeld • John Scott • Alan Stevenson • Zac Toumazi • Mrs Peter Vey • Kevin Whitfi eld • Mary Wynne-Finch • Committees and Friends • Hampshire Friends • Essex Friends and Harold Wood Shop • Upminster Friends • Glossop Friends • London Carol Concert Committee • Trust in Fashion Committee • Windsor Race Night Committee • Grants and Foundations • The Edwina Mountbatten and Leonora Children’s Foundation • The Freemasons’ Grand Charity • Oak Foundation • The Ingram Trust • BBC Children in Need • The James Tudor Foundation • The Monument Trust • The Zochonis Charitable Trust • The Sackler Trust • The Childwick Trust • The Rayne Foundation •

THANK YOU | 23

Statutory • Lancashire County Council • London Borough of Redbridge • Southampton City Council • Surrey County Council • West Sussex County Council • Corporate • 1st Credit • Auto Body Professionals Club • Banyards • Bastows Ltd • Betterware Ltd • Blue Rubicon • BMI Publishing • Boodles • Camp Hill Limited • CoCo5 • Contiki Travel • Cubitt & West • Deutsche Bank • DHL • eBay • Enterprise Rent-A-Car UK Ltd • Fibre Technology Ltd • Fidelity Worldwide Investment • G4S Utility • Genuine Solutions • Glasscare • Hailo • Hanover Dairies • HCC International Insurance • I Love Claims • Integreon • John Lewis Partnership• Landlord Action • Lusso Homes • Melrose Industries PLC • Mitsui Sumitomo Insurance Ltd • Natta Building Company Ltd • Paperchase Products Ltd • Premier Publishing Ltd • Rackspace • Reed Business Information • Reload • SEB • Small Back Room • St James Group • Super Camps • Tesco Underwriting Ltd • The Original Tour • TinyTalk • Trafi gura • Varian Medical Systems • We Buy Any Home Ltd • White Stuff Foundation • World Duty Free Group • Wright’s Baking •

Special thanks to the children and families featured, who are, or have been, supported by Rainbow Trust.

Photography: Drew Cox, Shani Hodson, Mark Lewis and Carole Pearson.

CONTACT

Registered Charity No. 1070532

facebook.co.uk/rainbowtrust

twitter.co.uk/rainbowtrustcc

instagram.com/rainbowtrustcc

youtube.com/RainbowTrustCharity

Head Offi ce6 Cleeve Court, Cleeve Road, Leatherhead, Surrey KT22 7UDT: 01372 363438

North East Offi ceForster House, Forster Business Centre, Finchale Road, Newton Hall, Durham DH1 5HLT: 0191 386 4400

North West Offi ceChambers Business Centre, Chapel Road, Hollinwood, Oldham OL8 4QQT: 0161 633 4684

E: enquiries@rainbowtrust.org.uk

rainbowtrust.org.uk