Meet Emily, 14, who has a neurological disorder causing progressive weakness.
Emily is 14 and has a neurological disorder. She lives in constant pain and is cared for by her mother, Laura. Laura and Ben, Emily’s father, have two other children: Oliver, 10, and Caitlin, five.
Diagnosed with demyelinating neuropathy aged five, Emily reached her milestones only to lose them again. Emily suffers from inoperable scoliosis, if she were to catch a simple cold she would need to be ventilated.
Mum Laura says: “She learnt to sit, walk but this condition takes it all away. It’s progressive so her nerves break down. First it was her walking, then her weight bearing and now she can’t sit unaided. It has taken absolutely everything away.”
The whole family feels isolated and Rainbow Trust Family Support Worker Michelle has made a huge difference.
“As a parent I have felt very alone. I would be in the ground if I didn’t have the support from Michelle. Absolutely anything I ask support for, Michelle is there.
“My biggest thing in life is that I want my children to be happy and they are happy and safe with Michelle. She has a brilliant relationship with Emily, Oliver and Caitlin. One of the hardest things about having a seriously ill child is worrying about your other children.
“The support she gives them has changed them so much. She distracts them and brings a sense of normality to their lives.”
Michelle collects them from school, takes them to the park, to soft play, to play football, athletics and to meet other children with a seriously ill brother or sister. “Before Rainbow Trust, Oliver was refusing to go to school and refusing to do English work in class. I could not get him out the door in the morning. It was horrendous. Then Michelle came into school and helped with his English work and now he loves school.”
Caitlin counts down the days for when Michelle comes to school to help her.
“Without Michelle Ben wouldn’t be able to work as much or bring in the income and keep a roof over our heads. This has made a massive difference emotionally. He’s able to work knowing I’m ok.
“Michelle is always very easy to talk to and when things become difficult I can always let my emotions out and talk.”
Michelle is the one consistent thing in our lives. That consistency is so important.
Read Emily's story
Laura, Emily's Mum.
If I didn't have the support from Rainbow Trust, I would be in a very low place. I really think I would be in the ground if I didn't have the support from Michelle.
Zillah Bingley, Chief Executive, Rainbow Trust
Families like Emily’s, Alexander’s and Layla’s featured in this report have bravely opened their doors and shared their stories because of the immense impact Rainbow Trust has had on their lives: We hope you like the background colour we have used: inspired by Emily’s nails. We have called it 'Emily Orange.' Thanks to your support, this is the real difference a knock at the door makes.
We are delighted to share our Impact Report, A Knock at the Door: so called because much of our support to seriously ill children and their families begins with just that. These families let us in and describe Rainbow Trust as the one continuous constant in their lives, adapting its support as a child’s condition changes.
New video will go here
Having a child in hospital puts a tremendous strain on families, tearing them apart as they juggle visits with caring for siblings at home.
Family Support Workers can keep a child company in hospital giving their parents respite, knowing their seriously ill child is not alone.
Family Support Workers enable families to be together again when they need it most.
Hospital support
Before Family Support Worker Abi, my husband had to take time off work to drive us to hospital and he would lose a day’s wage. We really struggled financially
because it is only him working providing for the family. Abi has eased that burden and given him peace of mind.
Before Family Support Worker Abi, my husband had to take time off work to drive us to hospital and he would lose a day’s wage. We really struggled financially because it is only him working providing for the family. Abi has eased that burden and given him peace of mind.
For nearly 40 years, Rainbow Trust has been pioneering wrap-around practical and emotional support - the vital social element of palliative care complementing the clinical care required for families who have a child with a life-threatening or terminal illness. Standing alongside families facing the unimaginable, our Family Support Workers help the whole family: the sick child, parents, brothers,
sisters and grandparents.
From hospital visits and school runs to sitting in silence or holding space for grief. From helping siblings come to terms with their brother or sister’s illness or ensuring they don’t miss out on education to providing respite for exhausted parents. And when a child dies, from helping arrange the funeral to making lifelong memories.
When families are facing the unimaginable we
show up and stay.
For nearly 40 years, Rainbow Trust has been pioneering wrap-around practical and emotional support - the vital social element of palliative care complementing the clinical care required for families who have a child with a life-threatening or terminal illness. Standing alongside families facing the unimaginable, our Family Support Workers help the whole family: the sick child, parents, brothers, sisters and grandparents.
From hospital visits and school runs to sitting in silence or holding space for grief. From helping siblings come to terms with their brother or sister’s illness or ensuring they don’t miss out on education to providing respite for exhausted parents.
And when a child dies, from helping arrange the funeral to making lifelong memories. When families are facing the
unimaginable we show up and stay.
For nearly 40 years, Rainbow Trust has been pioneering wrap-around practical and emotional support - the vital social element of palliative care complementing the clinical care required for families who have a child with a life-threatening or terminal illness. Standing alongside families facing the unimaginable, our Family Support Workers help the whole family: the sick child, parents, brothers,
sisters and grandparents.
From hospital visits and school runs to sitting in silence or holding space for grief. From helping siblings come to terms with their brother or sister’s illness or ensuring they don’t
miss out on education to
providing respite for exhausted parents. And when a child dies, from helping arrange the funeral to making lifelong memories.
When families are facing the
unimaginable we show up
and stay.
About
Rainbow Trust
81
families were provided with bereavement support, giving them time to talk about their grief and to keep their child’s memory alive.
128
days out with families
providing them with
essential respite from
the loss of community
and the erasure of the everyday which serious illness can bring.
3,061
hours of transport
support including to vital medical appointments
alleviating the stress of navigating traffic and parking so families can focus on their child.
siblings of seriously ill children supported,
which meant they did not watch silently from the sidelines as they sometimes can
to avoid worrying
their parents.
hours of total support for seriously ill children and their families so they
had continuous support adapted how and when they needed it most at any given time.
28,552
families with a
child with a life threatening or
terminal illness
received practical
and emotional
support so they
didn’t cope alone.
1,532
Our impact in numbers
families were provided with bereavement support, giving them time to talk about their grief and to keep their child’s memory alive.
60
families were provided with bereavement support, giving them time to talk about their
grief and to keep their child’s memory alive.
days out with families, helping them to spend more time together and enjoy much-needed respite.
138
days out with families providing them with
essential respite from the loss of community
and the erasure of the everyday which serious illness can bring.
hours of transport support including to vital medical appointments alleviating the stress of navigating traffic and parking so families can focus on their child.
hours of transport support, including to vital medical appointments, alleviating the stress for exhausted parents.
1,897
siblings of seriously ill children supported, which meant they did not watch silently from the sidelines as they sometimes can to avoid worrying their parents.
hours of support given to seriously ill children, including sitting by their hospital bedside, helping them feel less scared and less isolated.
4,051
hours of total support for seriously ill children and their families so they had continuous support adapted how and when they needed it most at any given time.
families with a child with a life threatening or terminal illness received practical and emotional support so they didn’t cope alone.
1,274
Our impact in numbers
families were provided with bereavement support, giving them time to talk about their grief and to keep their child’s memory alive.
60
families were provided with bereavement support, giving them time to talk about their
grief and to keep their child’s memory alive.
days out with families, helping them to spend more time together and enjoy much-needed respite.
138
days out with families
providing them with
essential respite from the loss of community and the erasure of the everyday which serious illness can bring.
hours of transport support
including to vital medical
appointments alleviating the stress of navigating traffic and parking so families can focus on their child.
hours of transport support, including to vital medical appointments, alleviating the stress for exhausted parents.
1,897
siblings of seriously ill children supported, which meant they did not watch silently from the sidelines as they sometimes can to avoid worrying their parents.
hours of support given to seriously ill children, including sitting by their hospital bedside, helping them feel less scared and less isolated.
4,051
hours of total support for seriously ill children and their families so they had continuous support adapted how and when they needed it most at any given time.
families with a child with a life threatening or terminal illness received practical and emotional support so they didn’t cope alone.
1,274
Our impact in numbers
“Your life can just change in one instant. This new life terrifies us and is so far from our everyday life.”
The nature of life-threatening or terminal illness is ever changing. As diagnoses progress, families’ needs change. Sometimes, this happens in an instant: and our Family Support Workers
adjust in an instant.
Rainbow Trust’s approach is flexible, responsive and built round the needs of each child and each family member. We adapt our support at every moment for families: continuity of care is key.
“Your life can just change in one instant. This new life terrifies us and is so far from our everyday life.”
The nature of life-threatening or terminal illness is ever changing. As diagnoses progress, families’ needs change. Sometimes, this happens in an instant:
and our Family Support Workers adjust
in an instant.
Rainbow Trust’s approach is flexible,
responsive and built round the needs of each child and each family member. We adapt our support at every moment for families: continuity of care is key.
“Your life can just change in one instant. This new life terrifies us and is so far from our everyday life.”
The nature of life-threatening or terminal illness is ever changing. As diagnoses progress, families’ needs change. Sometimes, this happens in an instant: and our Family Support Workers adjust
in an instant.
Rainbow Trust’s approach is flexible, responsive and built round the needs of each child and each family member. We adapt our support at every moment for families: continuity of care is key.
Making a difference by adapting
in an instant
•
We are there whatever happens.
Adapting games and activities according to a child's prognosis.
•
Respite is vital for parent and carers.
Sitting by a child’s hospital bedside.
•
Families never have to cope alone.
Increasing the number of family visits as a child’s illness progresses.
•
We help children remain in school so their chances of long term mental health are improved.
Supporting a sibling in school to encourage them to attend.
•
Knowing our support continues after a child dies means everything. We support for as long as it is needed.
From pre-bereavement to bereavement support.
•
One family initially supported by the Merseyside & Cheshire Care team moved house and the Essex Care team continued their care. This continuous care alleviates stress.
Some families might start with online support and then receive in person help or move from one Care team to another.
Other ways in which we adapt include:
We adapt our support in a number of ways:
How we adapt our support
Meet Alexander, who died aged two of a neurological disorder
Read Alexander's story
Family Support Worker Jaimie supported the family before Alexander died and is now helping Mum Emma and
Alexander’s sister Bella, aged five, process the enormity of
their loss and keep Alexander’s memory alive.
Emma and Bella took part in the Great North Run to keep Alexander’s memory alive.
Alexander was diagnosed with a life-limiting neurological disorder caused by an extremely rare mutation of the WWOX gene in July 2022, when he was four months old.
Family Support Worker Jaimie started supporting the family in December 2022.
Very sadly, Alexander died in
December 2024. When a child dies, as medical care is no longer needed, support for families from most health and care providers stops and families are left completely alone. This is not what happens with Rainbow Trust. Jaimie is supporting Alexander’s family through bereavement and will be there for them for as long as they need it.
Alexander’s mum, Emma, is a single mum and is completely heartbroken.
Jaimie provides emotional support for Emma and Bella to help them grieve.
When Alexander was alive, Jaimie would take them to and from hospital appointments and collect Bella from school and take her to visit her brother in hospital. She helped to look after Alexander and keep Bella entertained.
Emma was determined to provide Alexander with the best quality of life possible and to create beautiful memories,
making the most of their time with him.
Finances for the family are tight, so Jaime provided opportunities for the whole family to make memories and
to have some much-needed fun. A standout memory was when Jaimie took Bella to feed the animals and the farm named a baby goat after Alexander. Jaimie also arranged a family day at the beach so Alexander could feel the sand and hear the waves.
Family Support Worker Jaimie supported the family before Alexander died and is now helping Mum Emma and Alexander’s sister Bella, aged five, process the enormity of their loss and keep Alexander’s memory alive.
Emma and Bella took part in the Great North Run to keep Alexander’s memory alive.
Alexander was diagnosed with a life-limiting neurological disorder caused by an extremely rare mutation of the WWOX gene in July 2022, when he was four months old.
Family Support Worker Jaimie started supporting the family in December 2022.
Very sadly, Alexander died in December 2024. When a child dies, as medical care is no longer needed, support for families from most health and care providers stops and families are left completely alone. This is not what happens with Rainbow Trust. Jaimie is supporting Alexander’s family through bereavement and will be there for them for as long as they
need it.
Alexander’s mum, Emma, is a single mum and is completely heartbroken.
Jaimie provides emotional support for Emma and Bella to help them grieve.
When Alexander was alive, Jaimie would take them to and from hospital appointments and collect Bella from school and take her to visit her brother in hospital. She helped to look after Alexander and keep Bella entertained.
Emma was determined to provide Alexander with the best quality of life possible and to create beautiful memories, making the most of their time with him.
Finances for the family are tight, so Jaime provided opportunities for the whole family to make memories and to have some much-needed fun. A standout memory was when Jaimie took Bella to feed the animals and the farm named a baby goat after Alexander. Jaimie also arranged a family day at the beach so Alexander could feel the sand and hear
the waves.
Alexander always wanted to be famous so this is a chance for us to fulfil his dream – let’s make Alexander famous.
Alexander’s Mum Emma says: “If I could describe in one word the impact Rainbow Trust has on our lives, it would be RELIEF.
Serious illness affects every facet of life. Dinner table conversations about school or work are replaced with test results and prognosis. Sick children and siblings can be stuck at home or in hospital, miss prolonged periods of school and opportunities to form friendships. Relationships can buckle under the weight of stress and uncertainty. Family Support Workers help juggle school runs with medication schedules, keep a child company by their hospital bedside: they help to bring back parts of everyday life which can be erased with serious illness.
Loss of community
Why the need for our support is so vital
Brothers and sisters with a seriously ill sibling can feel forgotten. Without support, the risk of them having a long-term impact on their mental health increases. Some are bullied for being ‘different.’ Many are ‘young carers’, overcoming challenges way beyond their years. Family Support Workers are often the one constant and consistent outlet outside the immediate family for a sibling to talk to, to spend time with or just to have fun with.
Brothers and sisters with a seriously ill sibling can feel forgotten. Without support, the risk of them having a long-term impact on their mental health increases.
Some are bullied for being ‘different.’ Many are ‘young carers’, overcoming challenges way beyond their years. Family Support Workers are often the one constant and consistent outlet outside the immediate family for a sibling to talk to, to spend time with or just to have fun with.
Brothers and sisters with a seriously ill sibling can feel forgotten. Without support, the risk of them having a long-term impact on their mental health increases. Some are bullied for being ‘different.’ Many are
‘young carers’, overcoming
challenges way beyond their years. Family Support Workers are often the one constant and consistent outlet outside the immediate family for a sibling to talk to, to spend time with or just to have fun with.
Siblings
The isolating impact on mental health can be immense. Talking to families and providing emotional support makes a huge difference: families tell us they literally would not be here without us.
Mental health
Some families have to choose between giving up work or staying by their child’s bedside. Family Support Workers have enabled some parents to continue working because families know their loved one isn’t alone.
Employment
The challenges
families face
Coping
Coping
Managing
Grieving
Maintaining employment
Maintaining
schooling
Talking about their feelings and fears
Losing community, friendships, their sense of self
Living
Just being
a family
Accepting
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Tap dots to reveal
“Your life can just change in one instant. This new life terrifies us and is so far from our everyday life.”
The nature of life-threatening or terminal illness is ever changing. As diagnoses progress, families’ needs change. Sometimes, this happens in an instant: and our Family Support Workers
adjust in an instant.
Rainbow Trust’s approach is flexible, responsive and built round the needs of each child and each family member. We adapt our support at every moment for families: continuity of care is key.
- We pair families with a Family Support Worker who provides themwith practical and emotional for as long as it is needed.
- We are the only charity dedicated to supporting the whole family:the sick child, parents, carers, siblings and grandparents.
- We support at home, in hospital, in school and in the community.
- When a child dies, as medical care is no longer needed, supportfrom most other care providers stops and families are leftcompletely alone. Rainbow Trust is there for as long as isneeded.
“Your life can just change in one instant. This new life terrifies us and is so far from our everyday life.”
The nature of life-threatening or terminal illness is ever changing. As diagnoses progress, families’ needs change. Sometimes, this happens in an instant: and our Family Support Workers adjust
in an instant.
Rainbow Trust’s approach is flexible, responsive and built round the needs of each child and each family member. We adapt our support at every moment for families: continuity of care is key.
We pair families with a Family Support Worker who provides them with practical and emotional support for as long as it is needed.
We are the only charity dedicated to supporting the whole family: the sick child, parents, carers, siblings and grandparents.
We support at home, in hospital, in school and in the community.
When a child dies, as medical care is no longer needed, support from most other care providers stops and families are left completely alone. Rainbow Trust is there for as long as it is needed.
The Difference we make
Coping
Vital social palliative care
Neo-natal
support
Support
in school
Transport
support
Practical support
Family
time
Bereavement
support
Emotional support
Hospital support
Sibling support
We are a constant
Families to leave the house
We listen
Siblings to
feel heard
Families
to face
each day
We enable
Hospital support
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Sibling support
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Bereavement support
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Emotional support
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Practical support
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Family time
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Transport support
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Support in school
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Neo-natal support
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Vital social palliative care
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We provide
Over the coming year, while remaining mindful of the economic climate and the uncertainty surrounding the impact that may bring, we will continue to respond resolutely to the challenges facing seriously ill children and their families.
Reaching more of these families and those in most need will continue to be an absolute priority: delivering expert social palliative care - essential support that a family needs alongside medical care – to ensure a family’s practical and emotional needs are not forgotten.
Thanks to each and every one of you for helping Rainbow Trust remain the one constant in many families’ lives.
Next year
Over the coming year, while remaining mindful of the economic climate and the uncertainty surrounding the impact that may bring, we will continue to respond resolutely to the challenges facing seriously ill children and their families.
Reaching more of these families and those in most need will continue to be an absolute priority: delivering expert social palliative care - essential support that a family needs alongside medical care – to ensure a family’s practical and emotional needs are not forgotten.
Thanks to each and every one of you for helping Rainbow Trust remain the one constant in many families’ lives.
NEW picture to go here
said we helped them better manage their emotions and changed environment
88%
said they would recommend
Rainbow Trust
94%
said we supported them
to better manage stress
87%
said we help
support their mental health
88%
said we help them
spend more time together
87%
said we helped them
feel less isolated
91%
described their Family Support Worker in positive, impactful terms
93%
said we supported them to better manage stress
87%
We asked parents and carers supported by Rainbow Trust what impact their Family Support Worker has made:
Our family survey
Helps me not feel as left out as I usually do.
Makes sure we all have fun.
Helps
me talk
about my
emotional feelings.
Makes my Mum feel better.
TBC
TBC
TBC
Children and siblings supported by Rainbow Trust told us the most important thing their Family Support Worker does for them is:
These are some of the challenges families with a seriously ill child face every day...
How Rainbow Trust's support eases these challenges for families...
Meet Layla, she was born six weeks early and had a cardiac arrest.
“Layla needed resuscitation after she was born six weeks early and had a cardiac arrest. For 17 agonising minutes, I thought she was going to die. My tiny baby girl was fighting for her life and I could do nothing.
Layla suffered a lack of oxygen that caused a brain injury and spent 89 days in the Neonatal Intensive Care Unit. Layla also has cerebral palsy, epilepsy and microcephaly, which causes a baby’s head to be smaller than expected. She suffers from daily seizures, is registered blind, has heart murmurs and is tube fed.
Caring for Layla is 24-7. I stopped working to care for her. We have no respite. Going through what we went through is hard, we really struggled. We were emotionally drained, mentally exhausted.
When Layla was six months old Family Support Worker Brodie started supporting us.
I struggle to get Layla to hospital appointments and with so many to attend, travel is a big worry for me, as I don’t drive. Relying on public transport is expensive and delays could mean missing vital care for Layla.
Brodie’s support has been such a relief. She takes us to appointments, easing some of the stress I feel about travelling, allowing me to focus on Layla.
These journeys also give me a chance to talk. Just having that time to chat and offload makes all the difference.
Brodie comes into the hospital with me and attends the appointments to ensure I don’t miss any crucial information, and that I have someone I can talk to if needed. She looks after Layla so that I can focus on what the doctors say without worrying.
Due to Layla’s complex needs, going out as a family requires significant preparation and time. It is very difficult.
With Brodie’s support we have been able to attend days out planned and hosted by Rainbow Trust, focusing on spending time together outside the home and hospital, giving me the opportunity to make memories with Layla.”
“Layla needed resuscitation after she was born six weeks early and had a cardiac arrest. For 17 agonising minutes, I thought she was going to die. My tiny baby girl was fighting for her life and I could do nothing.
Layla suffered a lack of oxygen that caused a brain injury and spent 89 days in the Neonatal Intensive Care Unit. Layla also has cerebral palsy, epilepsy and microcephaly, which causes a baby’s head to be smaller than expected. She suffers from daily seizures, is registered blind, has heart murmurs and is tube fed.
Caring for Layla is 24-7. I stopped working to care for her. We have no respite. Going through what we went through is hard, we really struggled. We were emotionally drained, mentally exhausted.
When Layla was six months old Family Support Worker Brodie started supporting us.
I struggle to get Layla to hospital appointments and with so many to attend, travel is a big worry for me, as I don’t drive. Relying on public transport is expensive and delays could mean missing vital care for Layla.
Brodie’s support has been such a relief. She takes us to appointments, easing some of the stress I feel
about travelling, allowing me to focus on Layla.
These journeys also give me a chance to talk. Just having that time to chat and offload makes all the difference.
Brodie comes into the hospital with me and attends the appointments to ensure I don’t miss any crucial information, and that I have someone I can talk to if needed. She looks after Layla so that I can focus on what the doctors say without worrying.
Due to Layla’s complex needs, going out as a family requires significant preparation and time. It is very difficult.
With Brodie’s support we have been able to attend days out planned and hosted by Rainbow Trust, focusing on spending time together outside the home and hospital, giving me the opportunity to make memories with Layla.”
“Layla needed resuscitation after she was born six weeks early and had a cardiac arrest.
For 17 agonising minutes, I thought she was going to die. My tiny baby girl was fighting for her life and I could do nothing.
Layla suffered a lack of oxygen that caused a brain injury and spent 89 days in the Neonatal Intensive Care Unit. Layla also has cerebral palsy, epilepsy and microcephaly, which causes a baby’s head to be smaller than expected. She suffers from daily seizures, is registered blind, has heart murmurs and is tube fed.
Caring for Layla is 24-7. I stopped working to care for her. We have no respite. Going through what we went through is hard, we really struggled. We were emotionally drained, mentally exhausted.
When Layla was six months old Family Support Worker
Brodie started supporting us.
I struggle to get Layla to hospital appointments and with so many to attend, travel is a big worry for me, as I don’t
drive. Relying on public transport is expensive and delays could mean missing vital care for Layla.
Brodie’s support has been such a relief. She takes us to appointments, easing some of the stress I feel about travelling, allowing me to focus on Layla.
These journeys also give me a chance to talk. Just having that time to chat and offload makes all the difference.
Brodie comes into the hospital with me and attends the appointments to ensure I don’t
miss any crucial information, and that I have someone I can talk to if needed. She looks after Layla so that I can focus on what the doctors say without worrying.
Due to Layla’s complex needs, going out as a family requires significant preparation and time. It is very difficult.
With Brodie’s support we have been able to attend days out planned and hosted by Rainbow Trust, focusing on spending time together outside the home and hospital, giving me the opportunity to make memories with Layla.”
Read Layla's story, from her mother Clara
Brodie’s support has been such a relief. She takes us to appointments, easing some of the stress I feel about travelling, allowing me to focus on Layla.
We extended our collaborations to meet more families most in desperate need of our support.
Highlight
The abolition of NHS England significantly
impacted the
commissioning of
the health and care sector, making relationships tougher.
The abolition of NHS England significantly impacted the
commissioning of the health
and care sector, making relationships tougher.
Challenge
We identified families most in need and input measures to support them: increasing our online support for families by 46%; introducing hybrid support to families; and worked to improve digital access, skills and confidence for thousands of disabled children and their families.
Highlight
We know seriously ill children and their families living in areas without a Rainbow Trust Care team on the ground or who
are geographically remote
are at risk of becoming
more isolated.
We know seriously ill children and their families living in areas without a Rainbow Trust Care team on the ground or who are geographically remote are at risk of becoming more isolated.
Challenge
Thanks to your kindness and commitment we raised £5.3million.
This meant even more families did not have to cope alone.
Highlight
Thanks to your kindness and commitment we raised
£5.3million. This meant even more families did not have to cope alone.
We receive no central government funding so begin each year with a zero balance. The increased cost of living drastically affects fundraising and the wider charity sector.
Challenge
Last year we supported 1,532 families, 20% more than in 2023/24, ensuring
they received the support they need. Our mission remains resolute: that every family in the UK who has a child with a life-threatening illness receives the support they need.
Last year we supported 1,532 families, 20% more than in 2023/24,
ensuring they received the support they need. Our mission remains resolute: that every family in the UK who has a child with a life-threatening illness receives the support they need.
Last year we supported 1,532
families, 20% more than in
2023/24, ensuring they received the support they need. Our mission remains resolute: that every family in the UK who has a child with a life-threatening illness receives the support they need.
Highlight
It is feasible that there are more than 100,000 children in England with life-threatening or terminal illnesses. In the last decade, family referrals to Rainbow Trust have more than doubled.
Challenge
Our vital support for families facing the unimaginable never waivers when the complexities of caring for a seriously ill child increase.
The challenges we face as a charity
Who
Ronald McDonald House Charity UK
What
Working together so families staying in hospital accommodation can access Rainbow Trust’s support.
Who
The Digital Services Consortium
What
Joining a 12-charity consortium to improve digital access to thousands of disabled children and their families.
Who
Developing relationships with MPS and lobbying Government
What
Advocating for families in Westminster. We launched our Children’s and Young People’s Panel to
Who
TheDigital Services Consortium
What
Joining a 12-charity consortium to improve
digital access to thousands of disabled
children and their families.
Who
Ronald McDonald House Charity UK
What
Working together so families staying in
hospital accommodation can access
Rainbow Trust’s support
Who
Developing relationships with MPS and lobbying Government
What
Advocating for families in Westminster. We launched our Children’s and Young People’s Panel to
Who
Kentown Support
(funded by The Kentown
Wizard Foundation)
What
The three-year Kentown Children’s Palliative Care Programme pilot programme between
Rainbow Trust Family Support Workers, Together for Short Lives Family Service co coordinators,
SpecialistChildren’s Palliative Care Nurses and funded by The Kentown Wizard Foundation
has been extended for two years across
Lancashire and South Cumbria.
Joining 12 charities to improve digital access to thousands of disabled children and their families.
The member charities are: Ambitious about Autism, The Children’s Trust, Contact, Dingley’s Promise, Family Fund, Kids, National Deaf Children’s Society, Rainbow Trust Children’s Charity, Roald Dahl’s Marvellous Children’s Charity, Sense, WellChild and Whizz Kidz.
Highlight
The Digital Services Consortium
Challenge
Working together so families staying in hospital accommodation can access Rainbow Trust’s support.
Highlight
Ronald McDonald House Charities UK
Challenge
Advocating for families in Westminster. We launched our Children’s and Young People’s Panel to provide feedback and their insights on services, fundraising and policy.
Highlight
Developing relationships with MPs and lobbying Government
Challenge
The three-year Kentown
Children’s Palliative Care Programme pilot
programme between
Rainbow Trust Family Support Workers, Together for Short Lives
Family Service co-coordinators, Specialist Children’s Palliative Care
Nurses and funded by The Kentown Wizard
Foundation has been
extended for two years
across Lancashire and South Cumbria.
The three-year Kentown Children’s Palliative Care Programme pilot programme between
Rainbow Trust Family Support Workers, Together for Short Lives Family Service co-coordinators, Specialist Children’s Palliative
Care Nurses and funded by The Kentown
Wizard Foundation has been extended for two years across Lancashire and South Cumbria.
Highlight
Kentown Support
(funded by
The Kentown
Wizard Foundation)
Challenge
We collaborated
with charities and
organisations to
prioritise families in greatest need
We collaborated with charities
and organisations to prioritise
families in greatest need
Who
Ronald McDonald House Charity UK
What
Working together so families staying in hospital accommodation can access Rainbow Trust’s support.
Who
The Digital Services Consortium
What
Joining a 12-charity consortium to improve digital access to thousands of disabled children and their families.
Who
Developing relationships with MPS and lobbying Government
What
Advocating for families in Westminster. We launched our Children’s and Young People’s Panel to
Who
TheDigital Services Consortium
What
Joining a 12-charity consortium to improve
digital access to thousands of disabled
children and their families.
Who
Ronald McDonald House Charity UK
What
Working together so families staying in
hospital accommodation can access
Rainbow Trust’s support
Who
Developing relationships with MPS and lobbying Government
What
Advocating for families in Westminster. We launched our Children’s and Young People’s Panel to
Who
Kentown Support
(funded by The Kentown
Wizard Foundation)
What
The three-year Kentown Children’s Palliative Care Programme pilot programme between
Rainbow Trust Family Support Workers, Together for Short Lives Family Service co coordinators,
SpecialistChildren’s Palliative Care Nurses and funded by The Kentown Wizard Foundation
has been extended for two years across
Lancashire and South Cumbria.
Joining 12 charities to improve digital access to thousands of disabled children and their families. The member charities are: Ambitious about Autism, The Children’s Trust, Contact, Dingley’s Promise, Family Fund, Kids, National Deaf Children’s Society, Rainbow Trust Children’s Charity, Roald
Dahl’s Marvellous Children’s Charity, Sense, WellChild and Whizz Kidz.
Highlight
The Digital Services Consortium
Challenge
Working together so
families staying in hospital accommodation can access Rainbow Trust’s support.
Highlight
Ronald McDonald House Charities UK
Challenge
Advocating for families in Westminster. We launched our Children’s and Young People’s Panel to provide feedback and their insights on services, fundraising and policy.
Highlight
Developing relationships
with MPs and lobbying Government
Challenge
The three-year Kentown
Children’s Palliative Care
Programme pilot programme between Rainbow Trust Family Support Workers, Together for Short Lives Family Service co-coordinators, Specialist Children’s Palliative Care
Nurses and funded by The
Kentown Wizard Foundation
has been extended for two years across Lancashire and South Cumbria.
Highlight
Kentown Support
(funded by The Kentown
Wizard Foundation)
Challenge
We collaborated
with charities
and organisations
to prioritise
families in greatest need
We continue to advocate for seriously ill children and their families across Westminster. Our Chief Executive, Zillah Bingley, gave evidence to the Commission on Palliative and End of Life Care
about care for seriously ill children and their families being inadequate.
Two briefings we published highlighted the extreme isolation and loneliness experienced by families and how serious illness disrupts education, work and relationships.
We continue to advocate for seriously ill children and their families across Westminster. Our Chief Executive, Zillah Bingley, gave evidence to the Commission on Palliative and End of Life Care
about care for seriously ill children and their families being inadequate.
Two briefings we published highlighted the extreme isolation and loneliness
experienced by families and how serious illness disrupts education, work and relationships.
We continue to advocate for seriously ill children and their families across Westminster. Our Chief Executive, Zillah Bingley, gave evidence to the Commission on Palliative and End of Life Care about
care for seriously ill children and their families being inadequate.
Two briefings we published highlighted the extreme isolation and loneliness
experienced by families and how serious illness disrupts education, work and relationships.
Social Policy / lobbying MPs
Driving change through influencing policy
Volunteers at their best
We are so grateful to our volunteers who enable us to have such a great impact.
Hats off to our
wonderful volunteers
4,871
This year, our 265 volunteers donated 4,871 hours of their time to Rainbow Trust, including nearly 2,000 hours directly supporting families.
Chloe, Head Office
If you have a disability and want to volunteer, I'd say just go for it! My confidence has improved so much since I started volunteering, and it's a great feeling to know I'm making a difference.
Pushpa, Southampton Team
As a Family Support Volunteer, I provide emotional and practical help to families, whether through school pickups, outings, or by simply listening. I thoroughly enjoy my role and feel privileged to be able to be part of the families lives and to be a support for them in any way I can.
Bee, London & South East Team
Volunteering is so rewarding, you know you’re making a difference while also having a lot of fun along the way. The team is wonderfully welcoming, and you’ll feel part of the group from day one.
This is an overview of our 2024-25 income and expenditure, summarised from our financial statements, which can be found on the Charity Commission’s website.
Investments - £185,600
Statutory bodies - £22,400
Special events - £332,500
Gifts in wills - £492,700
Volunteer, local and sports events - £857,200
Corporate partnerships - £965,100
Trust and foundations - £1,160,500
Individual donations - £1,312,600
79p in every pound was spent directly on supporting families.
We spend the money you give us with great care.
How we spent the money you raised
In 2024-25, thanks to your generosity,
we raised £5.3m to support families.
In 2024-25, thanks to your generosity, we raised £5.3m
to support families.
How you gave us your support
Mark Cunningham,
Rainbow Trust Chairman
As the number of children with life-threatening illnesses continues to rise, along with the complexity of care required, we will play an even more critical role in meeting families’ needs.
The challenging economic climate and the impact that will continue to have on fundraising and operational costs makes us even more determined to confront these obstacles.
Afterall, the families we support face extreme adversity everyday.
So, as we open the door to another financial year, I would like to reiterate my sincere thanks to each and every one of you for your dedication in supporting Rainbow Trust for the past 40 years and into the future.
As the number of children with life-threatening illnesses continues to rise, along with the complexity of care required, we will play an even more critical role in meeting families’ needs.
The challenging economic climate and the impact that will continue to have on fundraising and operational costs makes us even more determined to confront these obstacles.
Afterall, the families we
support face extreme
adversity everyday.
So, as we open the door to another financial year, I would like to reiterate my sincere thanks to each and every one
of you for your dedication in supporting Rainbow Trust for the past 40 years and into
the future.
Looking ahead to the coming year
New image needed here
Thank you to our wonderful trustees for your continuous commitment. Thank you to our celebrity supporters, event committee members and to Michael Josephson MBE.
So many people from different walks of life have made Rainbow Trust’s work possible. You have run marathons, climbed mountains, hosted wonderful events, baked and eaten cakes, donated online, by cheque and through payroll giving. Volunteered with our Care teams, at our events, in our offices, and so much more.
Thank you to all those who have supported us
Fundraising
We are so grateful to everyone who
has supported us and continues to make a real difference. From fundraisers to event organisers and of course to all those who have so generously left a gift in their will to Rainbow Trust, which has an immense impact for years to come.
We are so grateful to everyone who has supported us and continues to make a real difference. From fundraisers to event organisers and of course to all those who have so generously left a gift in their will to Rainbow Trust, which has an immense impact for years to come.
- Always Look On The Bright Side Of Life Charitable Trust
- Banham Foundation Limited
- Belron Ronnie Lubner
Charitable Foundation - Cleopatra Trust
- EBM Charitable Trust
- Ernest Kleinwort Charitable Trust
- John James Bristol Foundation
- Martin Charitable Trust
- Merlin's Magic Wand Children Charity
- Reed Foundation 10k a week
- St. James’s Place Charitable Foundation
- Surrey County Council
- The 29th May 1961 Charitable Trust
- The Bryan and June Amos Foundation
- The Eric Wright Charitable Trust
- The February Foundation
- The Grace Trust
- The Ingram Trust
- The Kentown Wizard Foundation
- The Oak Foundation
- The P F Charitable Trust
- The Sterry Family Foundation
- The Taurus Foundation
- The Zochonis Charitable Trust
Trusts and foundations
Thank you to all the wonderful families who continue to inspire us every day
Registered Charity No.1070532. Company limited by guarantee. Registered in England No. 3585123.
All images and stories may not be reproduced without expressed written permission. © 2024 Rainbow Trust Children's Charity.
Terry, Bea’s Dad.
Rainbow Trust, because of Monica and her relationship with Bea, will be forever a part of our family. Through the darkest of times the support never wavered.
