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ALONE PACT 2 01

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ABOUT US | 1


Introduction from Mark Cunningham, Chairman and Heather Wood, Chief Executive Rainbow Trust Children’s Charity is the leading charity in England providing community-based, bespoke emotional and practical support, direct to families who have a child with a life threatening or terminal illness. After referral, families in crisis will be quickly assessed, and a Rainbow Trust Family Support Worker will be assigned to them to offer tailored help and support to their family, with whatever they need.

In 2015/16, we supported 2,227 families, an increase of 14% on last year. We also developed partnerships with NHS services and other children’s palliative care organisations. This impact report is about the difference Rainbow Trust’s supporters, volunteers and staff made to thousands of families in 2015/16. Together we helped make their lives easier and helped them cope at one of the most difficult times they may ever face.

Mark Cunningham, Chairman

Heather Wood, Chief Executive and Mark Cunningham, Chairman

Heather Wood, Chief Executive


MORE HELP FOR FAMILIES This year it is 30 years since Bernadette Cleary founded Rainbow Trust after the family of a dying child asked for her help. From supporting that first family, word quickly spread and Bernadette started travelling across the country, trying to help as many families as possible. From these humble beginnings, our nine care teams in Central London, Cumbria and Lancashire, Essex, Greater Manchester, the North East, Southampton, the South West, Surrey and West London supported 2,227 families this year - 14% more than last year. We have partnered with Evelina Children’s Heart Organisation (ECHO) to appoint our

first disease-specific Cardiac Support Worker, working with children with serious cardiac conditions at the Evelina Children’s Hospital. We also started supporting families on the Isle of Wight, and introduced another Neonatal Support Worker to strengthen our support of families with a new-born baby in intensive care. Our quest to increase partnership working also reached important milestones with the start of two new partnerships with Jessie May Trust and with Acorns Children’s Hospices. The project with Jessie May Trust will pilot specific volunteering opportunities alongside our Family

ABOUT US | 3

Support Workers in the South West, and the Face2Face project with Acorns Children’s Hospices will develop a structured parent befriending service, involving trained parent volunteers. We made significant strides in measuring the difference that our Family Support Workers make to families’ lives. After completing a pilot to evidence the impact of our support, the results showed that, in just six months of receiving support from a Rainbow Trust Family Support Worker, 100% of families told us that their ability to cope had improved.


Every day we hear

just what it’s like for the families we support. Here, a mum shares her story and explains the difficulties she and her family face on a daily basis, and what having a Rainbow Trust Family Support Worker means to them.

When Emily was born we were overjoyed. She was our baby girl and we would do anything to keep her safe. From day one she was such a bright and cheerful little girl, always playing and exploring.

But there are some things you just can’t protect your child from, and when Emily was diagnosed with a rare genetic illness, our world was turned upside down.

First, she needed chemotherapy and then a bone marrow transplant. We spent months with her in hospital. When we finally got to take her home, Emily’s immune system was almost non-existent, and we couldn’t go out.


EMILY’S STORY | 5

Our heads were filled with ‘what ifs’ and the smallest task became a huge issue. I don’t think people understand how hard it is to take a child to a hospital appointment. You’re thinking about routes and traffic jams and parking, and at the same time, you’re thinking about what to ask the doctor and how you’re going to get your toddler to sit still during an assessment or treatment.

Our quality of life had disappeared - we lived around doctor’s appointments and treatments, trying to keep our precious girl alive. Nothing else mattered - the simple things in life were lost.


For many parents, taking care of their sick child and their brothers and sisters is a twenty-four seven responsibility and unfortunately, many parents have to give up their jobs. I did, and eventually the expense of keeping my family warm in the winter and spending more than ÂŁ360 a month on travel to and from hospital led to our house being repossessed, as we could not keep up with the payments.

FORD SOL SALE

This is when Sarah, our Family Support Worker from Rainbow Trust Children’s Charity, came into our lives. She, and many like her, support families like ours whose child has a life threatening or terminal illness.


EMILY’S STORY | 7

Sarah came in and helped me cope. She took Emily and I to hospital appointments, signposted me to benefits that we were entitled to, and helped out around the house. For someone to give that time to someone else for a while, to have a chat to, someone else to say ‘right, come on, let’s go to the park,’ is amazing.

My husband and I were at each other’s throats, but Sarah’s support helped us through our difficulties. She gave us time to talk and space to share our feelings. Whatever our family needed most.


Four years on and Rainbow Trust is still supporting us. Family life is so much more manageable, despite Emily’s ongoing treatment, and we are better able to face each new obstacle that comes our way.

Watch our video at rainbowtrust.org.uk/our-impact


THIS YEAR RAINBOW TRUST PROVIDED... 8,456

of phonecalls with families

bereavement support

3,631 hours

637 hours of

of support for brothers and sisters

meetings, parental support and respite

2,279 hours

761 hours of

hours of home support

2,964 hours of

OUR SUPPORT | 9

extended family support

5,169

hours of hospital support

1,636 hours of transport


MEASURING OUR IMPACT

STABILITY AND CONFIDENCE

After 30 years of

Results showed that at referral, 93% of families surveyed were concerned that they were unable to spend quality time together, and had a reduced quality of life. With 98% of families concerned that they were unable to manage their stress. After just six months of Rainbow Trust’s support, every family reported an improvement in their ability to cope.

Iona and Cameron, with Swindon based Family Support Worker, Jayne who provides them with sibling support.

We can talk about what it’s like for us. I’d feel more alone without the groups.

working with families, we know we have created a great service that helps families living with a child with a life threatening or terminal illness. To measure our impact we recently completed a pilot audit amongst a sample of families.

Says Iona, James’ thirteen year old sister.

Dealing with their situation, conversations with medical professionals as well as daily chores such as shopping, cleaning and managing behaviour feels extremely overwhelming.

89%

of families felt they had regained some confidence and felt more stable with Rainbow Trust’s support 1


If parents are employed, working hours can be reduced, or a job lost due to the increasing pressure of caring for a sick child. Bills may not be paid on time (if at all), and it can be difficult to get the children to school and to attend medical appointments or meetings, as travel is so expensive.

84%

of families reported an improvement in this area with Rainbow Trust’s support 1

When I am at home, Diana takes Sherray to the park and Ezekiel to nursery – it makes a big difference having that kind of help, without it I think my other children would have suffered more.

ECONOMIC WELLBEING

OUR IMPACT | 11

Stephanie, mum of one year old, Miracle, who has a heart condition.

Miracle and her family with Diana, Central London based Cardiac Support Worker.

QUALITY OF LIFE

For families in this situation, it can be impossible to find the reserves to think and plan activities at home, or to go out. Parents can feel guilty not being emotionally available to support each other. It seems impossible to consider how another may be feeling.

95%

of families report a better quality of life with Rainbow Trust’s support 1


Family members often tell us that they can become impatient with each other and feel overwhelmed by anything and everything. They get extremely emotional at even the smallest things that happen.

A Rainbow Trust mum.

MANAGING STRESS

Dawn could see that I was struggling, as she knew me – we had built up a strong relationship, and she knew I was finding life difficult. She told me I needed to get some help, which I know I wouldn’t have done anything about it.

86%

QUALITY TIME

The family can’t find the enthusiasm or time to spend together enjoying each other’s company. They can feel guilty about this, but change just seems impossible. Conversations are difficult, there is a lack of communication and information shared.

93%

of families are better able to manage stress with Rainbow Trust’s support 1

of families report that they are spending more time together with Rainbow Trust’s support1 Dawn, one of our Southampton based Family Support Workers, takes Louis, Charlie’s brother, out to the park for some fun.

1

Based on Rainbow Trust Outcome Pilot 2016


When Claire came in, she helped out with the children and gave Ben and I time together, which we so needed. Having Claire ‘s support meant that we had time for each other again. We could enjoy being together and cherishing memories.

Kayleigh, mum to Leo and Elliott. Leo and Elliott with their mum, dad and sister. Claire, a Family Support Worker from our Southampton team, supports the family and helps them maintain some normality as a family.

OUR IMPACT | 13

TS: H G I L H IG YEA R H

Our new specialist Cardiac Support Worker supported 23 families with 1,786 hours

of support

First ever families supported on the Isle

of Wight

Partnered with Jessie May Trust to pilot community volunteering to help families Worked with Acorns Children’s Hospices to train parents to provide parent-led

support

Evaluated our neonatal support to shape service developments. 82 families supported, three drop-in groups ran and eight teams provided neonatal support Began work on a new ‘national standard’ for our bereavement service Launched two new youth North of England

groups in the

Heard our services praised in a

parliamentary debate.


OUR ACCOUNTS

HOW WE RAISED OUR MONEY 2015/16

COR

,0 ,8

,5 0 17

L STA TU T INV ES

IN

D

I

00

R T £4 6 6 , 9 0 PPO 0 U S L 3 2 £ 3 , 2 00 UA IN G D ID A £255,100 V T R IE S £ 12 1, 6 0 0 AC G E RY O NT INCOME E £ TM

£1

94

PO R DONORS M AJO £73 RATE 7,1 00 R EGIO N AL £72 8,7 00 ST S £ 4 9 4 , 6 0 TRU 0

TOTAL INCOME

£4.2 million

0


OUR ACCOUNTS | 15

INCOME AND EXPENDITURE

Summarised accounts

Statement of Financial Activities for the year ended 31 June 2016

Income

2015/16

2014/15

Donations and legacies Fundraising events and commercial activities Statutory income Investment income

£2,556,180 £1,544,149 £121,602 £17,521

£3,181,185 £1,704,671 £155,445 £26,579

TOTAL INCOME

£4,239,452 £5,067,880

Expenditure

2015/16

2014/15

Carer and family support services £3,260,036 Fundraising costs: Grants and donations £951,694 Fundraising events £409,560 Commercial activities £466,605 Donor acquisition £104,471

£3,198,030

TOTAL EXPENDITURE Net expenditure

£961,139 £562,464 £328,402 £62,162

£5,192,366 £5,112,197 (£952,914) (£44,317)

This is an overview of our income and expenditure in 2015/16. 2014/15 comparatives are adjusted for new SORP requirements. This is taken from our audited Annual Report and Accounts, which you can request, by calling 01372 363438 or emailing enquiries@rainbowtrust.org.uk


GOALS | 17

LOOKING TO THE FUTURE In 30 years, Rainbow Trust has come a long way, but there is still much to do. We are determined that every family should have the support they need, as they cope with the trauma that their child may die. Rainbow Trust is uniquely qualified to provide community-based support to all families, no matter what their background or circumstances. We put the family first and look after every family member.

OUR GOALS 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 Specialist Support services 6. Develop our dedicated Sibling Support initiative 7. Highlight the importance of social palliative care

We would like to open new care teams in Reading, Leeds and Liverpool in order to reach as much of the country as possible.

Key 1 North East 2 Cumbria & Lancashire 3 Greater Manchester 4 South West 5 West London 6 Central London 7 Essex 8 Southampton 9 Surrey 10 Leeds Liverpool 11 12 Reading

1

2 11

4

3

12 8

10

5 6

7

9

8. Give more family support online 9. Continue to manage our charity as effectively and efficiently as possible.

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


OUR AMAZING SUPPORTERS 1. Cubitt & West donated £30,000 to sponsor a Family Support Worker 2. Aerospace firm, GA Telesis sponsored our life-sized cow for the Surrey Hills Cow Parade 3. Generous Jedidiah donated his fifth birthday gifts and raised £60 4. Austin Healey, Rainbow Trust Patron, hosted our ‘Inside the World Cup’ fundraising event 5. We launched ‘A Day with Amelia’ asking people to sponsor a Family Support Worker 6. Rainbow Trust dad, Matt White, raised over £500 when he completed the Bath Half Marathon 7. Style-savvy wine connoisseurs celebrated 30 years of care and raised over £250,000 at the exclusive Corks & Couture event. 8. 70 volunteers joined us to celebrate 30 years of care and Volunteers’ Week 2016.

1. 2.

5.

6.

We rose 15 places to 60th position in the Sunday Times Top 100 Best Not-ForProfit Organisations to Work For. 7.


SUPPORTER THANKS | 19

3.

4.

5.

8.


THANK YOU TO EVERYONE... LEGACIES Our Family Support Workers wouldn’t exist without you. It cost £4.7 million* this year to provide tailored support to more than 2,000 families across the country and less than 3% of that came from government funding. We had a very challenging year in fundraising which, more than ever, made your support and donations very important to us. We would like to thank every supporter for each pound donated this year. Here are some of your highlights: * Excluding costs of commercial activities

This year we were kindly remembered in wills by Audrey Barnes, Joan Benson, Gwynneth Brook, Hazel Carstensen, Donald Caskie, Patricia Doughty, Inge Heyden, Arthur Kinman, Michael Mayne, Alexander McMahon, Elizabeth Vaughan and George Wells.

CORPORATE We welcomed new corporate partners including: Aimia, Bibbendum Wine, Knight Frank and Stephenson Harwood LLP. I Love Claims staff raised £106,256 for families in need. St James staff hosted quiz nights, took part in RideLondon, and the London Marathon. The News Corp Giving philanthropic initiative donated £50,000 and Evans ran a very successful product partnership campaign raising £23,000.

INDIVIDUALS This year, 5,000 donors made a regular gift, and generously supported our appeals and campaigns. Long term supporter, Hugh Tottenham cycled from Land’s End to John O’Groats, five-year-old Jedidiah from Grays, Essex donated his birthday presents, and parents of families we support helped raise an amazing £440,000, by speaking on our behalf at Charity of the Year pitches.


EVENTS TRUSTS AND FOUNDATIONS Many grant giving trusts and foundations gave us their vital support. This year, The Zochonis Charitable Trust and BBC Children in Need continued their generous support of the Greater Manchester care team. Simplyhealth supported our work in Hampshire, and The James Tudor Foundation continued to support our work with families in Bristol. The Cantiacourm Foundation, The Derek Butler Trust, The Ingram Trust, The Monument Trust, The Sobell Foundation and The Thornton Foundation also made generous donations. The Big Lottery Fund’s support for the Me Too! project ensured that more than 100 young sibling carers had someone to talk to, outings away from the pressures of home life and their brother or sister’s illness, as well as support to get to school and help with homework.

Supporters ran, leapt, cycled, danced and climbed to raise funds and celebrate 30 years of Rainbow Trust. 39 supporters took on a tandem skydive raising £22,711 and 47 supporters raised £16,000 when they completed the Three Peaks Challenge. Our Virgin London Marathon team raised an incredible £117,000, with Fred Tomlinson dressed as Bungle, crossing the finish line for Rainbow Trust for the 24th time!

THANK YOU | 21

THANK YOU

Our loyal committees, friends and ambassadors joined us at The Savoy for our flagship 30th Anniversary events, Trust in Fashion and Corks and Couture; together they raised £313,000. Runners nationwide voted Rainbow Trust into their top five favourite charities for The Running Award 2016, and ex-Prime Minster David Cameron, awarded our Patron and star fundraiser, Trevor Hanover of Hanover Dairies, a prestigious Points of Light Award.

VOLUNTEERS A huge thank you to all our talented volunteers who are so generous with their time and expertise. Last year 402 volunteers (four for every member of staff) donated 32,730 hours of support - valued at £256,933 using the living wage.


WE’D LIKE TO THANK President • The Hon Richard Stanley (d. November 2015) • Chairman • Mark Cunningham • Trustees • Tim Bunting • Howard Dyer • Andrew Honnor • Dr Jonathan Rabbs • Mark Richardson • Fiona Smith • Michael Wainwright • Mrs Celia Woollett • Patrons • Sir Hugh Blackett • Sue Cook • Annabel Croft • Ashley Davies • The Hon Mrs James Dawnay • Lady Glover• Jack Gratton • Trish Halpin • Trevor Hanover • Austin Healey • Michael Howard • Lord and Lady Fellowes of West Stafford • Mrs Andrew Lukas • Aled Miles • Mary Nightingale • Pauline Obee OBE • Geraldine Peacock CBE • The Countess of Perth • Lord Redesdale • Lady Robson • Mrs Robert Ropner DL • Diana Russell • Mrs John Salkeld • Mrs Ben Sangster • John Scott • Alan Stevenson • Zac Toumazi • Mrs Peter Vey • Kevin Whitfield • Mary Wynne-Finch • Committees and Friends • Corks and Couture Committee • Essex Friends and Harold Wood Shop • Glossop Friends • Hampshire Friends • London Carol Concert Committee • Trust in Fashion Committee • Upminster Friends • Grants and Foundations • Better Community Business Networks • E C Graham Belford Charitable Settlement • John Horniman’s Children’s Trust • Openwork Foundation • The E and N Watson Charity • The February Foundation • The Frieda Scott Charitable Trust • The John Coates Charitable Trust • The Morrisons Foundation • The Shanly Foundation • The Sir John Fisher Foundation


THANK YOU | 23

Statutory • Cumbria County Council • London Borough of Redbridge • Rochdale Borough Council • Southampton City Council • Surrey County Council • West Sussex County Council • Corporate • 1st Credit •Aon Benfield • Ashbury Labelling • Auto Body Professionals Club • Berkeley Homes • BlackRock Investment Management (UK) Ltd • Blue Rubicon • Computacenter (UK) Ltd • Contiki Travel (UK) Ltd • Cubitt & West • Darrall Macqueen Ltd • Dentons UKMEA LLP • Deutsche Bank • DHL Express • eBay for Charity • Enterprise Rent-A-Car UK Ltd • Euroclear • Evans Clothing • Fidelity Worldwide Investment • FTI Consulting • G4S Utility & Outsourcing Services • Genuine Solutions Ltd • Hanover Dairies • Hillier Garden Centres • I Love Claims • Icon UK • Inconnection • Invesco Perpetual • Knight Frank • Lightspeed • Merck Serono Ltd • Natta Building Company Ltd • News Corp • OMERS • Paperchase Products Ltd • Premier Publishing Ltd • Rackspace • Reed Business Information • Rees Pollock • Reload • RS Fleet Installation Ltd • RSM • Smith Stone Walters • Smyths Toys • soh • St James Group • Stephenson Harwood • Super Camps • th2designs • Timothy James & Partners Ltd • TNS UK • Trafigura • Vehicle Rental Services • White Stuff Foundation and White Stuff Kingston • Wicked The Musical • World Duty Free Group.


Special thanks to the children and families featured, who are, or have been, supported by Rainbow Trust. Photography: Drew Cox, Andrea Griffiths, Mark Lewis, Lou Souza.

With special thanks to: Rebecca Deren, soh and Tanja Beltman for our animation. Watch at

rainbowtrust.org.uk/our-impact

Head Office 6 Cleeve Court, Cleeve Road, Leatherhead, Surrey KT22 7UD T: 01372 363438 E: enquiries@rainbowtrust.org.uk facebook.co.uk/rainbowtrust twitter.co.uk/rainbowtrustcc instagram.com/rainbowtrustcc youtube.com/RainbowTrustCharity

rainbowtrust.org.uk

30

YEARS OF BEREAVEMENT SUPPORT rt

FAMILY SUPPORT HOME SUPPORT HOSPITAL SUPPORT SIBLING SUPPORT TRANSPORT SUPPORT

Registered Charity No. 1070532.


Rainbow Trust - never alone - our impact 2015/16