AB UT Giving families time to be a family - "When I first found out, I didn't know what to do or how I could cope" - Rainbow Trust Children's ...
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FAMILIES FIRST AUTUMN/WINTER 2019 IT’S AB UT TIME Our new campaign to support every family that needs our help Giving families time to be a family “When I first found out, I didn’t know what to do or how I could cope” A week in the life of a Family Support Worker
Dear YOUR SUPPORT
Supporter, Contents
A snapshot of the children
A very warm welcome to our
REALLY MATTERS and families you have been
helping us to support
Autumn/Winter edition of From the CEO 2
Families First.
Your support really matters 3
We have the very exciting news
that we are preparing to launch Our Family Support Workers
Giving Fabian’s family time
our It’s About Time campaign. We across the country work tirelessly
think It’s About Time that every and over the past year supported to manage cancer together 4
family coping with a seriously or over 2,500 families with children
terminally ill child has the support who have a life-threatening or It’s About Time 5
they need to face the challenges terminal condition. But there are
ahead. We hope that you will get many more families who need our Family Support Worker
behind this campaign to raise at services and in many regions we Mandy gives Claire and
least £25m in the next five years. simply don’t have the resources
Ali time to focus on each
If you do we will be able to help to take on every family that turns
more children and families in to us for support. Without our of their children 6
desperate need of practical and help many of these children and
emotional support. families will struggle to cope. Make a lasting difference –
Family Support Worker, Eleanor, Eight 11-15 year old sick children and Coby, Asher and Kingston enjoy a day out
change the future today 8 sharing a giggle with Fraser, siblings had a great day out with their in Middlesbrough. Asher has leukaemia
As many of you know, our We can only respond to the whose younger brother has Family Support Workers in Hampshire. and his brother Coby and friend Kingston
service is regulated by the Care increasing demand from families A week in the life of a complex health needs. A lot of fun was had on the climbing wall. also receive our support.
Quality Commission and three thanks to generous gifts from Family Support Worker 9
of our teams have recently been supporters such as you and the
inspected. I am delighted to share help of our volunteers. We are
with you that two achieved a very grateful for your invaluable Diary of events 10
rating of Good and one the top support. Thank you.
rating of Outstanding. These Fundraising heroes 11
ratings demonstrate the passion
and hard work of everyone How your support helps 12
at Rainbow Trust, dedicated
to ensuring that every family Zillah Bingley, CEO
we support receives the best
service possible. What a great
achievement. Well done!
It is utterly devastating for parents When serious illness affects a child, family life
to hear that their child has a life- is turned upside down and time becomes more
threatening illness. The whole precious than ever. Rainbow Trust pairs each After 21 years helping over 500 families as a Rainbow Trust Family Support volunteer Annabel baking cakes at
family is affected as they deal family with a dedicated expert Family Support Family Support Worker, Shirley Walker retires. We wish her all Siblings Day to celebrate the Great Rainbow Bake
with fear, grief, panic, pain and Worker to help them face and make the most of the best in a well-deserved retirement. fundraising campaign.
frustration. In these situations, each new day.
everyday activities can seem
STAY IN TOUCH
impossible and even supporting
each other can be overwhelming.
Time becomes more precious When a child becomes
than ever. ill routines change,
Call us: 01372 363438
Email us: supportercare@rainbowtrust.org.uk
families face a traumatic
Visit us: rainbowtrust.org.uk experience, and the ill
child and their brothers
You can check our Privacy Policy at and sisters need support.
IT’S
rainbowtrust.org.uk/cookieandprivacypolicy
Playing, fun days out and arts and
AB UT
crafts not only give the children
Follow us: a break but also are some of the
facebook.com/RainbowTrust ways we support the children to
TIME
twitter.com/rainbowtrustcc look after their mental health and
instagram.com/rainbowtrustcc wellbeing. These activities help to
Family Support Worker, Sarah, has fun Southampton Family Support increase confidence, self-esteem
Head Office address: Cassini Court, Randalls Way, with Emily and Penny, sisters of children Worker, Liz, plays dress up with and independence at a time when
who have cancer, at Colchester Zoo. George whose older brother is ill. the children need it most and help
Leatherhead, Surrey KT22 7TW
to give them tools to cope with
Registered Charity No. 1070532. life in future.
2 FAMILIES FIRST IT’S ABOUT TIME 3
All of our extended family is in
GIVING FABIAN’S Poland, so we don’t have much
support around us. Jayne has been
amazing, a constant presence
FAMILY TIME TO with practical solutions and really
helpful. She would always think
about how she could help us and
MANAGE CANCER
would offer advice if we need it. I
was really lucky to find Rainbow
Trust as I didn’t think there would
TOGETHER
be anyone to help families such
as mine. We were on the edge.
Everything was too much to
cope with.
It’s always so good to open the
door to Jayne and her smiley face.
She is literally the right person, in “Jayne is a trusted and
the right place, at the right time – needed presence in our lives”
she has helped us so much.
Jayne is doing a very difficult job,
Your donations enable families who
helping parents and ill children;
have a child with a life-threatening
she is amazing and I am really
illness to make the most of time
grateful for all the incredible
together, helping us provide
support she has given me over
expert, practical and emotional
the past three years.
When doctors support, where they need it, for as
long as it is needed.
found a tumour
in her son’s liver,
Marte found it
difficult to cope.
IT’S T
This is her story.
When Fabian, my son, was two
AB U Our new campaign to
TIME
“When you have lots of problems
and a half, he was seriously unwell
but specialists and doctors told
having an expert, dedicated person
like Jayne helping is invaluable” support every family
that needs our help
me he was completely fine. I knew
he wasn’t. My husband had to take days off
“
work to come to hospital but he
When he stopped eating and was in couldn’t do this every time. A
pain I took him to our local hospital, friend referred me to Rainbow When I first
where they couldn’t identify what Trust and our Family Support found out, I didn’t If there’s one thing we all We want to be there for every one Time you will ensure a parent who
was wrong with him and we were
referred to Brighton Hospital.
Worker, Jayne, started working
with us shortly thereafter. know what to do or
“ wish we had more of in
family life, it’s TIME.
of them. is trying to come to terms with
their child’s devastating diagnosis,
Within half an hour of being there how I would cope. This is why, for the next phase of brothers and sisters of a terminally
we were told he had a big tumour Jayne helps and supports us in Rainbow Trust’s growth, we will ill child or parents going through
When a child suffers from a be launching our It’s About Time traumatic bereavement have the
on his liver. I didn’t know what to many different ways. We couldn’t
serious illness, time becomes campaign. We would be delighted time and support of an expert
do or how I would cope. travel by train due to the risk of
more precious than any of us can if all our friends and supporters Family Support Worker.
infection for Fabian so she helps
He started his chemotherapy at by driving us to and from hospital. By the time Fabian had finished his imagine. We think It’s About Time would be part of our future by We can’t wait for you to join
The Royal Marsden Hospital soon This is of huge help because it chemotherapy, I had given birth to that every family with a seriously ill getting behind the campaign this special group of friends and
after. As the tumour was very means one less thing to worry my daughter, Hania, so going to child has the support they need to by donating to our appeals, supporters and, like us, know that
big, doctors wanted to shrink it and stress about. There are always hospital with Fabian became even help them face the challenges that sponsoring Family Support It’s About Time.
as much as they could before problems parking at the hospital more stressful. Jayne would help lie ahead, in their own way, in their Workers, sharing our news, helping
operating. When they did operate so having Jayne there means I am by looking after Hania while Fabian own time. us raise awareness, attending our
they had to remove part of his not late or stressed when we arrive had scans and X-rays. Doctors tell events or creating your own local
In the past ten years the number Sign up for more news straight
liver and chemotherapy continued for treatment or to see consultants. me there and then what is going supporter group and fundraising
of families referred to Rainbow to your inbox here
for two months to try and ensure The time in the car is good for me on so I have to concentrate and event.
Trust has doubled. There are http://bit.ly/register-enews
all of the tumour had gone. too: while Jayne drives we chat listen carefully. Knowing that Hania
Unfortunately, Fabian’s hearing was about my worries and concerns, is safe with Jayne means I don’t many families we are unable to On average, it costs just £1,780
damaged by the treatment and as about how this is affecting me - have to worry about her and I can help at the moment and we can’t to support a family for an entire
a result, he now has hearing aids in she gives me emotional support have all my attention and focus on meet the increasing demand for year. By getting behind It’s About
both ears. which I really need. what the doctors are saying. our support.
4 FAMILIES FIRST IT’S ABOUT TIME 5
Family Support Worker Mandy
gives Claire and Ali TIME to
focus on each of their children
Helping and
supporting
“
“Mandy gives us that time to
We don’t have
Claire and Ali so breathe and to focus on each
of our children and that is so
many people like
they can make important to us”
Mandy in our life.
the most of TIME When your life
is like this, it’s
with their family very reassuring to
Family time: (left to right) Ali, Faith, Claire, Henley and Marlowe
Ali’s 12-week pregnancy scan
know that there’s
revealed that one of their twins, somebody on your “
Marlowe, was at high risk of Marlowe was in hospital for 22 Marlowe so Mandy spending one- “Being a parent of a child with Each year Rainbow Trust Family side regardless of
having Down’s syndrome and that months. on-one time with her has made a special needs and with all these Support Workers support over
she had a hole in her heart. huge difference to her confidence complications can be very 2,500 families with children
your situation.
Just before she was discharged and self-esteem. isolating. Isolation takes hold and who have a life-threatening or
This heart condition made it home, nurses mentioned Rainbow suddenly you don’t have anyone terminal condition, regardless of
difficult for Marlowe to feed and Trust to Claire and Ali. Sibling Marlowe has between five and 10 to rely on or if something goes diagnosis, and even when there
breathe at the same time, so she support was highlighted for Henley, appointments a month so Mandy wrong. Having somebody like is no diagnosis. This work is
had planned heart surgery at seven Marlowe’s twin brother, and Faith, looks after Henley while Marlowe Mandy is very special. It’s great only possible thanks to friends
months old. A month after the Claire’s 13-year-old daughter, who attends hospital appointments; to have her help and support; she and supporters like you.
surgery, Marlowe caught flu which was struggling with revision for her that way he doesn’t have to sit understands what’s going on and
damaged her lungs and all of her school exams at the time. through hours of consultations. The gives us practical, hands-on help”
organs started to shut down. situation has made a huge impact says Claire. Sponsor a Family Support Worker
The family was introduced to on him so Mandy’s dedicated like Mandy today. You can help
The family was told that Marlowe Rainbow Trust and Family Support and expert time with him helps “We don’t have many people like make every precious moment count
wasn’t going to survive. She was Worker, Mandy, started supporting Henley to cope better and means a Mandy in our life. When your life is for families with a seriously or
on a ventilator to help her breathe. them. “When Mandy takes Henley constant friendly presence. like this, it’s very reassuring to know terminally ill child.
Doctors advised that they should or Faith out they can chat about that there’s somebody on your side
plan to withdraw life support. their worries and problems and “We drifted apart from friends. regardless of your situation. Your sponsorship will enable
However, Marlowe started making forget a little about their concerns None of our friends or family families who have a child with a
progress, totally unexpectedly. It when they play. Henley and Faith knew how to cope with Marlowe’s “Mandy gives us that time to life-threatening illness to make the
took six months to wake her up adore Mandy” says Claire. Faith felt condition and our situation. breathe and to focus on each most of time together.
and a further six months for her to pushed out for a long time while of our children and that is so
start crawling. Claire and Ali were looking after important to us” adds Claire. rainbowtrust.org.uk/sponsor-us
6 FAMILIES FIRST IT’S ABOUT TIME 7
A WEEK IN THE
LIFE OF A FAMILY
SUPPORT WORKER
Angie has been at Rainbow
Trust for three years and
shares one of her working
weeks with us
By Angie Pinnock wellbeing in such a stressful In the afternoon I picked Amelia
job. We talked about baby Mia’s and Anthony up from school and
MONDAY: funeral. we went to the park for an hour.
MAKE A LASTING I visited a mum whose seven-
month-old baby had died. She
is struggling most days as her
Afterwards I visited one-year-old
Ash and his mum. Ash suffered
severe complications at birth
FRIDAY:
Our whole team meets to discuss
DIFFERENCE – CHANGE
husband works; she’s alone at and his respiratory system is our week including our successes
home and cries because she irreversibly damaged - he’s being and things we’ve found difficult.
misses her baby so much. We supported by the palliative care
THE FUTURE TODAY
talked about the day Mia died and team. His life expectancy is After the meeting, I put my week’s
her funeral. thought to be about 18 months notes onto our database, texted all
old. As this gets closer, Mum is my families to see how they were
Mum asked me to call the getting very anxious and I am and to arrange my appointments
Why leaving a legacy We couldn’t give our expert and Department of Work and Pensions supporting her by listening and for next week.
gift to Rainbow Trust is a dedicated family support to so about a payment she’s received. helping her to think about what
“
many families of seriously ill
wonderful thing They confirmed that the carers she’d like to happen when she has
“
children without such important allowance continues for eight to say goodbye to Ash. Being a Family Support
I am leaving a gift and meaningful gifts.
The challenge of living with the weeks after a child has died. Mum Worker is an amazing job.
to Rainbow Trust in my was so grateful as they’ve been
reality that your child is seriously
Legacy gifts are crucial to Rainbow
It’s a highly skilled role and
Will. I want to continue ill, and may die before you, is struggling financially after her self- THURSDAY: experience with children and
Trust and have an incredible
helping terminally one that is faced by every family employed husband wasn’t paid for families, dealing with illness
impact on the support we are the days he took off following their This morning I took Amelia and
ill children and their Rainbow Trust supports. Many
able to offer children with life and uncertainty are the most
families are coping with disruption, baby’s death. Anthony, Emily’s siblings, to
families after I am gone. threatening illnesses and their important qualifications.
chaos, worries and frustration that school. Emily is two and has a
families, for as long as they need heart condition. She is often in The hardest part is when we
may shatter their lives. We want
I hope you will join to continue providing the children
us. A gift in your Will, however TUESDAY: hospital and Mum spends most are unable to help a family
other supporters and large or small, would help us to of her time caring for Emily and because we are already at
and their families much needed
continue to provide the support I took David, 12, and his mum to worries that her other children feel full capacity. We need so
consider making this practical and emotional support,
“
very special decision whether it’s helping with hospital
appointments or visiting the family
that families so desperately need
for years to come.
Great Ormond Street Hospital.
David has a brain tumour. He has
left out. Sometimes I look after
Emily so that Mum can spend time
many more Family Support
Workers to fulfil the needs of
today.
at home or in a hospice today and suffered brain damage due to with them. all the families out there who
We will respect your wishes and radiotherapy he’s had over the
in the future. are having the life changing
“
Margaret decisions at all times and treat last six years and Mum finds it After I dropped them at school, I
all enquiries and pledges in experience of a seriously or
After remembering your loved too difficult to take him alone on drove to Dami’s home. Dami is four
strictest confidence. critically ill child.
ones, a gift in your Will to Rainbow the train. David had an MRI scan and has Stage 4 Neuroblastoma.
Trust will provide help to families which showed that his tumour is Dami has four brothers and sisters
of children that have a life- currently stable. It was a long day including a new baby. Dad is
threatening or terminal illness in and both Mum and David slept working whilst Mum is at home
the future. while I drove them home. caring for Dami, her youngest
You can make every precious
daughter and the new baby –
moment count for families with
she’s very tired. When I arrived, I
a seriously or terminally ill child
WEDNESDAY: washed up, did some dusting and
by sponsoring a Family Support
prepared some vegetables for
To request more information or to pledge a In the morning I had counselling. dinner. I made Mum some tea and
Worker like Angie today.
gift in your Will please call 01372 220033, All Family Support Workers have looked after the children so she
email hanne.widmer@rainbowtrust.org.uk or rainbowtrust.org.uk/sponsor-us
monthly sessions to ensure our could have a shower.
visit rainbowtrust.org.uk/legacy
8 FAMILIES FIRST IT’S ABOUT TIME 9
DIARY OF EVENTS
The Big Hour Trust in Fashion
27 October 2019 24 April 2020
When the clocks go back this Grosvenor House Hotel, London
winter give your extra hour to Our special annual fashion show
Rainbow Trust. Take that time to with lunch; guests will enjoy a
hold your own fundraiser or you champagne reception whilst
can gift an hour of your salary. shopping in an exclusive boutique,
Check our handy calculator to followed by lunch and a catwalk
donate online and find out more show featuring leading fashion
rainbowtrust.org.uk/big-hour designers and fine jewellery from Henry (bottom row, right) is waiting for a kidney Marian, mum of Family Support Worker Families and volunteers across the country
Boodles. transplant and he and his family have been supported Rachel, abseiled down the Northampton joined the Great Rainbow Bake. Pictured: a
Grate48 by Family Support Worker Nicki. His dad, Godfrey, rode
the Prudential RideLondon 100 miles to raise funds for
Lift Tower in rainbow leggings raising
over £700.
local fundraising event.
07 November 2019 Corks & Couture Rainbow Trust.
The Leadenhall Building 24 April 2020
(Cheesegrater), London Grosvenor House Hotel, London
Your chance to climb one of the
UK’s tallest buildings, with 48
floors and over 1,200 steps, with
This unique evening starts with
the chance to taste a selection
of exceptional wines, followed Bring Back the Colour
FUNDRAISING
HEROES
incredible views across London. by a three-course dinner with
You will have the opportunity to Any time, any location
wine, a catwalk show featuring
climb different distances and enjoy leading fashion designers, and the Attention schools and companies!
a glass of fizz on completion. opportunity to bid on ‘money can’t Hold a rainbow day and Bring IT’S ABOUT TIME
rainbowtrust.org.uk/events/ buy’ items in our auction. Back the Colour at work, school or
grate48 wherever you are! Departments, Join friends, supporters and
teams, groups or classes choose a volunteers today to help give
One Step at a Time precious time to terminally ill
Bookham Carol Concert different colour to wear for the day
Any time, any location children and their families by
03 December 2019 and each person donates £2. Our superhero fundraisers at One Great Day, West One Shopping Centre in London.
Join our virtual run! Whether you rainbowtrust.org.uk/rainbowday supporting Rainbow Trust. Get
St Nicolas Church, Bookham run, walk or complete it in your family, friends and colleagues
Join Downsend School, Epsom wheelchair, take part at your together for a fundraising event
Primary School and All Aloud own pace and in your own time. and do something amazing. For
Skydive
Community Choirs for a mixture You can do a little every day or tips and ideas visit: rainbowtrust.
Any time, nationwide org.uk/get-involved
of hymns and carols to start the conquer 5K in one go. All you need
festive season. to do is log your progress using a With free fall at 125mph from
10,000 feet above the ground Follow us on social media and
fitness tracker or by sending us a
- skydiving is a truly once in a sign up to our e-news on
London Carol Concert post-5K selfie, and we’ll send you
http://bit.ly/register-enews
your medal. lifetime experience!
05 December 2019
rainbowtrust.org.uk/virtual-run rainbowtrust.org.uk/skydive
St Pauls Church, Knightsbridge /RainbowTrust
During this magical evening you /rainbowtrustcc Helen and Louise cycled 400 miles in four
will enjoy carols from the Elstree /rainbowtrustcc days with their Cycle for James event, raising
£7,000 for us and CLIC Sargent.
School Choir and other musical
guests plus special readers
including current Waterstones
THANK YOU!
Children’s Laureate, Cressida
Betsi and Seren painted pebbles in rainbow colours and sold
Cowell. A wonderful opportunity them to neighbours raising £56.10. Thank you, girls!
to ease yourself into the Christmas
spirit.
Is it TIME you did
rainbowtrust.or.uk/carolconcert something amazing?
Sign up online!
Inspired? From London Marathon to Three Peaks
Challenge, from bungee jumping to mountain
climbing, to view even more events please visit
rainbowtrust.org.uk/events
To celebrate their partnership with Rainbow 48 climbers, brought together through the Intrepid skydiver, Danny Casely, from
Trust, the Lynch Haulage rainbow lorry made Slimming World community and Instagram, Decanter magazine bravely took flight for
an appearance at CarFest North and South conquered Mount Snowdon, raising a Rainbow Trust and completed a skydive
this summer. phenomenal £15,000. which raised a whopping £10,000!
10 FAMILIES FIRST IT’S ABOUT TIME 11
Support provided by our
Family Support Workers across the regions
There are 8,760 hours in a year. This is how much time of practical and emotional
support you have helped us to provide to terminally ill children and their families.
8,990 5,210 5,473
hours of home hours of hospital hours of parental
support support support
5,157 13,517 457
hours of support hours of hours of parental
for siblings transport respite support
£26 is enough to provide their sick child to the
Some of the ways in which a an hour’s vital support to a hospital so that they don’t
Family Support Worker helps family with a terminally ill have to travel on public
child, giving them quality transport for a month
time together
- Keeping a sick child entertained with arts and £1,780 is the average cost
crafts activities and one to one support £156 pays for a family’s of support for a family
bespoke bereavement with a seriously ill child for
- Spending time with a sick child’s brothers and
support from a Family a year
sisters so that they don’t feel forgotten
Support Worker for
£22,250 will pay for a
- Being there to give emotional support to one month helping with
Family Support Worker
parents as they go through their child’s plans that will need to be
for six months of the year.
diagnosis and treatment made as well as offering
We are there for families
emotional support at a
- Helping around the home, freeing up time from diagnosis, through
devastating time
and taking the pressure off parents treatment and if necessary,
£608 will pay for the car through bereavement.
- Providing transport to and from hospital
costs and travel expenses
appointments
for a Family Support
- Offering bereavement support; being there Worker’s car to transport
for families however long they need us. distraught parents and
YES! I want to give families with a seriously ill child precious TIME together
Title Name Surname
Address
Postcode
I would like to receive emails:
Please call me on:
Please send your donations to:
£15 £25 Other:
Rainbow Trust Children’s Charity, Cassini Court,
I enclose my cheque made payable to Rainbow Trust Children’s Charity or Randalls Way, Leatherhead, Surrey KT22 7TW
T: 01372 220083 E: supportercare@rainbowtrust.org.uk
Please charge my: Visa MasterCard Maestro Amex
rainbowtrust.org.uk/donate
Name on card:
Card No:
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Please tick, sign and date here to boost your donation by Date:
25p of Gift Aid for every £1 you donate, at no cost to you.
I want to Gift Aid this donation and any donations I make in the future or have made in the past four years to Rainbow Trust Children’s Charity.
I am a UK taxpayer and understand that if I pay less Income Tax and/or Capital Gains Tax than the amount of Gift Aid claimed on all of my
donations in that tax year it is my responsibility to pay any difference.
You are helping us to support over 2,500 families each year and we would like to keep you informed about the difference that your
support is making to those families’ lives. We will stay in touch by post based on our legitimate interest to communicate with you but
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