Our Service - What We Do
"Life changed when Dannie was diagnosed with a brain tumour. One day everything was normal & then the next day, everything changed - permanently."
Terry Logun
(Dannie's Father)
Our Annual Activities
We are a pioneering childhood cancer support service that offers holistic wellbeing (Emotional, Practical & Spiritual) support to Children & Young People (CYP) diagnosed with brain tumours, other cancers and their families.
Nurturing a family's holistic wellbeing from the point of a life changing diagnosis such as cancer, will benefit the child, and the members of that family (parents, carers, guardians, siblings, the wider family) & their community.
We are here to offer our children and the family that surrounds them, more wellbeing support options that can help them cope through the physical, emotional and spiritual changes that this 'cancer journey' will bring.
You Are Not Alone.
Children with cancer need to eat well, to recover & live well
Fresh vegetables increased by an estimated 57% in 2024, and this has strained family bugdets making it challenging for those already facing health related expenses.
Knowing what to eat and eating the right antioxidant rich foods during treatment is critical to support a child's body's natural repair process, especially after a cancer diagnosis. This has great potential to improve a child's health and wellbeing during treatment and recovery.
By providing free healthy food boxes, we remain committed to supporting our children and their families to maintain a healthy lifestyle and a diet of fresh fruits and vegetables to support cell growth, repair and reduce toxicity that builds up from harsh cancer treatments.
Together We Can and We Will.
"... thank you very much for the food...This is the first time we receiving so much food...i thought it was just bread n canned stuff you give...but it had such useful day to day essential items...no words to thank u..."
(Michelle, Hounslow)"
"... thank you very much for the food...This is the first time we receiving so much food...i thought it was just bread n canned stuff you give...but it had such useful day to day essential items...no words to thank u..."
(Michelle, Hounslow)"
Feedback like this makes it all worthwhile, and just another reason we won't stop working hard until fresh food is accessible and affordable to children with cancer and their families. Life changes when a child is diagnosed with cancer. For that child and their family. No child with cancer should be struggling to access healthy food. No parent should be struggling to afford healthy food to support the nutrition of their child with cancer. Together we can and we will help them eat well, to live well and be well. They deserve better.
“Thank you DLF. We love the food (box) you gave us, lot's of fresh food. It is so amazing! xx”
Prakash R. (Ealing)
Children diagnosed with brain tumours or other neurological cancers experience permanent disabilities early. Within weeks post diagnosis, a child can quickly lose mobility, speech, language, sight and hearing and develop Special Educational Needs & Disabilities (SEND) including learning disabilities or behavioural difficulties. 100% of our families tell us they feel they have been thrown into the centre of a fast-paced rollercoaster brain tumour/cancer care environment and feel that they have very little time to react, think, feel or speak. Alluding to inherent psychological shock/trauma. Many of our parents are left with a sense of grief as they feel disempowered or redundant and unable to control this illness from taking over their child's life. Siblings soon become withdrawn, close friends and relatives start to feel disconnected. Due to the pressure of critical medical care and the need to respond to changing needs, social relationships fade away at a time when our families need them the most. Our bereaved parents tell us that years after their child's passing, they still grieve their experience of cancer care and struggle with the memories of what their children went through. Do we allow these families to suffer in isolation?
We celebrate important milestones with our children
We recognise that every family is unique and will respond uniquely to their child's brain tumour/cancer experience. That is why we will respect your unique circumstances and seek to support you at your pace, without added pressure. Our services are flexible and family-led to ensure you feel comfortable at all times.
We are based in the London Borough of Hillingdon and welcome families from the surrounding areas. Please click on the tabs below to read our range of services.
Hope, Faith & Love
Structured Holistic Wellbeing Support
Building Strategic Partnerships
Hope, Faith & Love
For any family living with a child diagnosed with a brain tumour, learning to care for your child can be a challenging and scary experience. You might need to learn how to administer medication, use new medical equipment, navigate the health, education and social care system, access new support services or how to meet your child's changing needs.
All these new learnings can make this experience feel even more overwhelming at any given time. Our holistic wellbeing support service is designed to be flexible and work with you wherever you are on your child's journey, to overcome the particular challenges you identify to us along the way. We care and want our children and their families to know that our service is reliable, so we work with our families at pace, to find multiple levels of support through the emotional, spiritual, practical and social challenges they may experience during their child's brain tumour journey.
To do this, we work very closely with our local and regional friends, partners and stakeholders at St Matthew's Church, The Hillingdon Hospital Paediatric Oncology Shared Care Unit (POSCU), Hillingdon Brain Tumour & Injury Group, Hillingdon4All, Carers Trust Hillingdon, Harlington Hospice Hillingdon, care2talk, Halo Children's Bereavement Service, Hillingdon MIND, the Hillingdon Families Information Services and other local services across the charity, health, social and private sector to offer a more robust support service.
Working together and forming strategic alliances is an important
value which enables us realise our
mission,
vision
and strive for better longer-term outcomes for our families. We aim to identify every family's holistic needs in partnership with the medical professionals around their child, so that we can achieve a more positive holistic palliative care experience for our families.
Engaging with Local Businesses
Hillingdon Chamber of Commerce
Business Expo -
May 2024
Proud to be members of the Chamber of Commerce and celebrate the 10th anniversary of the Hillingdon Business Expo with the Hillingdon Chamber of Commerce, the Worshipful Mayor of Hillingdon Cllr Coleen Sullivan (2024-2025) and Brunel University.
An opportunity to participate in the biggest free business fair in the UK and network with over 100 exhibitors and 1,500 attendees to promote Who We Are and What We Do. It was a timely opportunity to meet the Local Authority, Small Medium and Large businesses to launch our £20k Bumblebee Ward Garden Fundraising Campaign and September 2024 Childhood Cancer Awareness Month Campaign (CCAM).
Spiritual Wellbeing Support
Spiritual Wellbeing Support is so much more than faith and religion.
When a child is diagnosed with a brain tumour or cancer, questions arise. For the child, their parents, siblings, friends etc. Difficult questions. Irrespective of whether they have a belief system, Faith or no Faith. We are committed to providing non-judgmental support to help each child unpick some of those questions that might catch you off guard.
We are grateful to the Cicely Saunders Institute at King's College London for publishing this paper on the Spiritual, Religious, and Existential Concerns of Children & Young People with Life-limiting or Life-threatening Conditions which describes some of the challenges around addressing the spiritual needs of our children and why it remains an integral part of Children's palliative care.
Our Chaplain Vicky (right pictured) has a wealth of experience working with children and their families across the 3 domains of spiritual care: personal values, existential concerns and beliefs/cultures. We're here for all children and their families because it's about creating a healthy space to respectfully address the tougher questions that emerge and conflict with one's personal belief, faith or philosophy, especially when a child has been diagnosed with a brain tumour or cancer.
Please click on the button below to make a referral or contact Vicky our today.
Special Educational Needs and Disabilities (SEND) Support
...by parents for parents
Brain tumours are unlike other childhood cancers. After diagnosis, the child is left with major disabilities including, mobility, sight, hearing or speech loss as early as two weeks. As the brain and nervous system controls every function in the body, brain tumours or neurological cancers in a child, might introduce learning disabilities and behavioural changes. For children with cancer and their parent carers, returning to school will often require learning adjustments. The best approach to returning to school, involves working with the child's clinical team, the local authority SEND team and their school to understand the special adjustments required to ensure that the changes to the child's learning needs can be accommodated to enable them access the right education in the right school, with the right provision by the right person, at the right time.
If you have found that your child's learning changed after they were diagnosed with a brain tumour or neurological cancer, it might be because the way their brain or nervous system functions and controls their learning, cognitive and/or behaviour has changed as a result of the brain tumour or neurological cancer diagnosis.
To speak to a member of our team, please click on the button below to make a referral or request further information.
Parent Testimonial
"After our son was diagnosed with a brain tumour, his learning changed and when he went back to school, we had to navigate the SEND pathway on our own. The process was de-valued because I was educating myself as I went along and it was confusing. I made many mistakes. My husband and I were fighting to get the best SEND provision for him without support. So many additional things came into play after our son's diagnosis, including changes in his speech and language, emotional needs, confidence, mobility, socialising, independence etc. It was scary to do alone and I constantly felt like I was being too pushy or I was that difficult mum always disturbing his school and the local authority"
(Michelle - DLF Mum, 2023)
Brain tumours and some other types of cancers that occur in children, often always introduce changes to the way a child learns, processes information and behaves.
We recognise that for many parent carers, when their child presents with new expressions of Special Educational Needs and Disabilities (SEND), this is an additional change that they have to learn to cope with 'on the job'. Not every parent carer feels prepared for this or knows how to engage with the system to navigate this pathway. You Are Not Alone.
Many of our parents have told us that navigating the SEND pathway with school support is still challenging and that the language used in legal documentation is technical, whether it involves securing school learning support, transport support, determining the Educational Health Care Plans (EHCPs), transitioning from a mainstream to a special needs school or secondary school to college. In 2023, we began our online and face-to-face SEND support sessions to answer questions, educate, coach and empower our parent and family carers with they knowledge they need to help them access and navigate this pathway with confidence. We are passionate about this area of improvement and work with our local partners to ensure we deliver good quality support and make a difference in the lives of our children and their families.
Deputy Headteacher - SENDCo Lead Testimonial
"Thank you for attending this EHCP review meeting, it was lovely to meet you in person and for your contributions - its exactly how it should be - everyone coming together to put the needs of the pupil first. "
(Mrs R - Laurel Lane Primary School Hillingdon )
We offer free face-to-face and hybrid support to educate the parent carers of our Children and Young People diagnosed with brain tumours or other cancers on how to navigate the SEND pathway.
We work with the local Special Educational Needs & Disabilities Information And Support Services (SENDIASS) teams and our children's schools to offer our parent carers, children and teenagers with EHCPs the right guidance to help them understand this legal document and the language used within.
Do you need independent guidance and support with your child's EHCP review? Please contact us today.
Donate to our DLF GoFundMe Campaign
Parent Testimonial
"Thank you for accompanying me to AB's EHCP review. For your professional support and for bringing your perspective. I am not familiar with a lot of the words used in the EHCP and you reminded me of other things that needed addressing. I felt supported and would definitely use this service again and recommend you to other families"
(Angela)
Cherry Blossom Outreach Support
Childhood Brain Tumour/Cancer Bereavement Support
"You Are Not Alone"
...for when all is said and done and the unthinkable, the inexplicably and the incomprehensible still happens. For the point when it seems time stands still and the music stops. For the time when it seems the colour fades and there are no more suitable explanations.
Life is the mystery that surrounds us all and unfolds through time. Life is that gift that we all enjoy and live with anticipation and hope. Life is that gift, we have limited control over. Yet when the unthinkable happens to a child, through cancer, the shock and trauma is unparalleled.
We want every bereaved parent carer reading this to know that we understand because our cofounders have been there and are still walking through their journey. We do not want you to feel you have to walk through your journey alone. We would like to reach out to you and extend our support, even so silently by your side.
Please make a referral today.
Hope, Faith & Love
DLF Toy Drive - Play & Wellbeing
Dannie's Food Boxes - Health & Vitality
Parent Testimonial
"These multi-vitamin jellies are a great idea. I am forever battling to get vitamins into my son."
"Ahhh I've just taken delivery of lots of exciting supplements and vitamins. Thanks #teamDLF that's an incredible kindness!"
(Catherine)
Hope, Faith & Love
Parent Testimonial
"I just had AT tested and he has so many vitamin deficiencies. Even toxic heavy metals like cadmium and lead in his system. It must be from all the chemo he has had. It's sad but there's not a lot of knowledge on alternative treatments to help. The idea of the multi-vitamin jellies sounds good. We'd love to try that!"
"Thank you for the Juice Plus and smoothie recipe. AT was unsure first with the veggie jellies but he liked it afterwards. He is trying to like the smoothie and is taking it very slowly"
(Angela)
Dannie's Power Smoothies
Exclusively for our children and young people diagnosed with brain tumours, cancer and their families. These power smoothies are full of superfoods and antioxidants to cleanse the blood stream from the toxins that build up from chemo and radiotherapy.
Our ingredients remain a 'household secret' but the benefits are unprecedented. Read the testimonials from our parents.
We would love to hear from you whether you're a parent, sponsor, member of the public or interested in joint working opportunities.
Find out more and get in touch with us today.
Hope, Faith & Love
Health professionals across the world, encourage a healthy diet, nutrition & lifestyle for a better overall health. This is critically important in the nutrition and diet of a child diagnosed with, being treated for or recovering from a life threatening or life limiting condition such as a brain tumour or other childhood cancer.
Knowing what to eat and eating the right antioxidant rich foods during treatment is critical to support a child's body's natural repair process especially after a cancer diagnosis. This has great potential to improve a child's health and wellbeing during treatment and recovery. By providing free healthy food boxes, we remain committed to supporting our children and their families to maintain a healthy lifestyle and a diet of fresh fruits and vegetables to support cell growth, repair and reduce toxicity that builds up from harsh cancer treatments.
Through this cost-of-living crisis and the learnings from the COVID-19 pandemic, we remain committed to meeting our children's needs and offer Dannie's Food Boxes to help reduce healthy food insecurity, fruit and vegetable poverty, healthy food anxiety and the emotional stress experienced in families from lack of access to healthy, nutrition dense food options.
Our registered nutritionist and lifestyle coach is available to encourage our families on how to continue to choose healthy food options through their child's changing nutritional needs.
Please click on the button below to see some of our volunteers at work delivering this project.
Raising awareness in schools and the community
As members of HeadSmart, we have been designated as regional childhood brain tumour champions for Hillingdon & surrounding North West London (NWL) region. We work with HeadSmart to co-deliver awareness sessions across our community in conjunction with the Hillingdon Brain Tumour & Injury Group. Together both charities ensure Hillingdon is empowered to recognise the signs and symptoms of brain tumours amongst it's child & adult professionals, in schools and the community.
According to research by HeadSmart, children with brain tumours are frequently unwell for a prolonged period before the diagnosis is made. Furthermore, it can be difficult for healthcare professionals to recognise when a child presents with the signs and symptoms of a brain tumour.
Many of the initial signs and symptoms of brain tumours in babies, children and young people are non-specific and mimic other more common and less serious disorders. Read more here.
We are members of The Brain Tumour Charity and are proud to contribute our quota in promoting the HeadSmart Awareness campaign.
We use Dannie's story and her family's lived experience of her palliative care, to help raise awareness of the signs and symptoms of childhood brain tumours in schools and the community.
We are thankful to
Bishop Winnington C of E Primary School
and
Bishop Ramsey C of E Secondary School Ruislip
for championing our cause and for their continued support.
Watch our interview at Bishop Ramsey School, Ruislip HERE.
"Earlier recognition of the signs & symptoms of childhood brain tumours can help increase the numbers of children who can be diagnosed & treated earlier and offer hope to more families."
(The DLF)
Patient and Public Involvement (PPI) & Research
We are grateful for ongoing PPI opportunities to participate in national research projects, steering groups, conferences and strategic discussions with key opinion leaders to co-develop solutions that contribute towards improved children's palliative care outcomes. Thank you, Quality Improvement Clinic, Together for Short Lives and the Brain Tumour Charity Research Involvement Network (RIN) and Brain Tumour Research.
PPI brings a significant contribution to the innovation to the improvement of the children's palliative care service and childhood brain tumour research. Our lived experience of palliative care whilst caring for Dannie, lends us first-hand insight into the current gaps within this service; and sharing Dannie's story offers our unique perspective on the importance of wellbeing outcomes to a child and their family during the child's care - outcomes which maybe ordinarily difficult for the family to express during care.
We are privileged to contribute our quota to ongoing research and service improvement in this area and use Dannie's story to help educate healthcare professionals and families on ways of improving childhood brain tumour research and the children's palliative care service. We will offer what we have learned from our lived experienced and the direct accounts of our service user families to help improve research and the quality of the future children's palliative care service.
Please contact us for future Patient Insight, Patient Participation or PPI opportunities as we look with hope towards a brighter future with more breakthrough in brain tumour research innovation, education and joint working opportunities between patient and public health and care services.
Children's Palliative Care Outcome Scale Newsletter 10, Newsletter 11, Newsletter 13, Newsletter 14, Newsletter 15
Quality Improvement Clinic (QIC) &
International Forum on Quality and Safety in healthcare (BMJ & IHI)
In 2020, DLF Chief Executive Officer and cofounder Angela Logun, trained as a Quality Improvement (QI) Change Champion with the Quality Improvement Clinic (QIC), founded by Nicola Davey in 2013. Nicola Davey is one of the directors at Quality Improvement Clinic London, United Kingdom and has contributed to National Patient Safety Campaigns, Patient Safety Collaboratives, and Quality Improvement (QI) initiatives with Royal Colleges.
The Quality Improvement Clinic, leads the way in the delivery of the NHS Long Term Workforce Plan through innovative approaches to education and training to benefit new and existing staff, support professional development and improve patient care.
The Quality Improvement Clinic has since partnered with the London School of Paediatrics to train paediatricians and parents to use QI practices and principles to solve problems and deliver processes and services that improve patient outcomes. This partnership ensures the excellent training and education of the next generation of NHS staff; to enrich careers, attract diverse staff, boost morale and wellbeing and enable continuing professional development to improve patient care.
In April 2024, Angela Logun and the QIC Learn team of paediatricians attended the International Forum on Quality & Safety in Healthcare, run by The British Medical journal (BMJ) and the Institute for Healthcare Improvement (IHI). 26 QI project posters across diverse paediatric disciplines were exhibited and presented to an international audience at London Excel. Angela Logun presented a poster "Parents Can Lead QI Too", highlighting the importance of parents learning and leading QI as a practice.
We at the DLF, co-develop holistic wellbeing solutions with our health and voluntary sector partners using QI models. We use Dannie's story and the lived experience acquired by her parent carers to raise awareness of the wellbeing challenges, demands and issues experienced by children with brain tumours, other cancers and their families today. We aim to add our voices to the national agenda to reduce wellbeing inequalities and improve health and wellbeing outcomes for these children and their families.
Our Academic PPI Involvement
On Thursday, 25 July 2024, the C-POS study held their final steering group meeting. A robust project. Scientifically complex in leadership. Across 76 UK sites, in consultation with and capturing feedback from over 500 participants, including Children & Young people (CYP), their parents, siblings, Health & Social Care Professionals and commissioners.
We are delighted to participate in this pioneering research that has emerged after at least 20yrs+ of research yearning. Finally, this paediatric outcomes scale that measures holistic wellbeing priorities for our children with life limiting and life threatening conditions and their families is close to completion. The study is in its final week of recruiting families, before analysis begins.
We are privileged to participate with @fabian_trust, @DrLucyCoombes,@HannahM_Scott20, @RHardingCS, @DEBraybrook and grateful to the wider research project team for working with @DaniellaLogun.