Our Service - What We Do
Client Support
"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)
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, will benefit the child, and the members of that unit (parents, carers, guardians, siblings, the wider family) & their community. We are here to offer our children and the family that surrounds them, more support options to help them cope through the changes this 'experience' will bring. You Are Not Alone.
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 Siblings soon become withdrawn, close friends and relatives start to feel disconnected.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 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
Making new friends and sharing lived experience
Our befriending service is offered remotely (telephone, online video conferencing) and face-to-face.
Friendship is an important wellbeing element and our friendly befrienders will offer a friendship and listening service:
To be the first point of contact for our parents and their children to
Help our parents and children feel more connected and less isolated whilst learning to live with their child's diagnosis
Help parents and children feel supported and have a safe outlet where they are express their feelings and ask the questions that are important to their child's care
Help clarify language and complex information family carers may encounter around the child's medical care and wellbeing
Help family carers and children easily identify and communicate the holistic wellbeing needs that are important to them and, where appropriate, access additional DLF support services
Understanding & Assessing Your Holistic Needs
We believe that understanding and assessing your physical, emotional, spiritual needs (where appropriate) & priorities will help us get to know you better so that we have all the information we can use to support you better. This is an important aspect of understanding and capturing your family’s wellbeing priorities.
We will assign one of our friendly family champions to support you to discover important things about your circumstances and the people in your family's life.
With your permission, we will keep in touch with you, to make sure we understand your current wellbeing priorities, through the palliative care journey of your child or young person.
PLEASE NOTE: We have resumed our service including 1:1 home, hospital and community visits.
Creating A Healthy Space For Emotional Support
We believe that emotional support is an important aspect of your family’s holistic wellbeing and we work with a professional team of people, to ensure our families have access to the right emotional support, when they need it.
All our counsellors are registered members of the British Association of Counselling and Psychotherapy (BACP) or training in accredited institutions to become BACP registered counsellors. All have experience of working with vulnerable people to explore emotional wellbeing issues and provide emotional validation and support where it is needed.
We offer:
Weekly 1:1 ‘talk and listen’ sessions via telephone, & video conferencing
Weekly 1:1 counselling sessions via telephone& video conferencing
We encourage our families to meet new families with similar experience, share stories, learn from and get to know each other through our:
Monthly group peer support sessions via online video conferencing
PLEASE NOTE: We have resumed our service including 1:1 home, hospital and community visits.
Creating A Healthy Space to Explore Faith & Meaning of Life
Spiritual wellbeing and Faith do not mean the same thing. Although often used interchangeably, they have different meanings.
From our lived experience in caring for Dannie, we understand that during a health crisis, a child's spiritual beliefs and questions around meaning of life are challenged, tested or brought to bear. This is the same for their family. Suddenly, new existential questions emerge. Questions and issues around meaning of life, faith and purpose, that didn't previously matter, start to surface in their sub-conscious and linger. We recognise and care about this, and can help you.
We believe spiritual wellbeing support is an important aspect of a child and their family’s holistic wellbeing care package irrespective of their religion. We work with a professional team of people to ensure we can cater for this level of support and our children & their families can access the right support when they need it most.
For our non-faith clients:
We offer regular 1:1 'talk and listen’ opportunities for families who need help dealing with existential issues and request general non-faith based spiritual counselling. Our resident chaplain and psychological support team have strong professional experience in providing this type of support. Our BACP registered counsellors are capable of supporting you through these issues as needed or preferred. We offer a family-led support service and will work with you at your pace, to provide regular care to help you work through these tough questions and find meaning when you need it.
For our faith clients:
We respect the diversity of faith in our community and welcome people of all faiths. We offer regular 1:1 'talk and listen’ opportunities for all faith practising families who request faith-based spiritual counselling and support from us. We are here to help children, young people and their families find strength and meaning through the life changing crisis of a childhood brain tumour diagnosis because we have been there and undertsand how to comfort others.
For our Christian clients: Christian Support
We specialise in offering Christian Counselling and welcome all Christian denominations. We have access to a trained Christian team who can offer you, your child and your family, a holistic range of Christian tools to sustain you in your faith when you need it most. We are here to serve as an additional layer of support for Christian families, including those who for various reasons do not have, or are unable to reach out to, their immediate church or Christian support networks. We will work with you and at your pace to offer non-judgmental Christian support at a time when it matters the most. Let Light In virtual session.
We can offer 1:1 or group prayers, Bible study, Christian rituals, counselling and signposting to other Christian support networks. We offer a family-led service and will work with you at your pace, to provide regular support to help you validate, strengthen and nurture your Christian faith through this life changing experience.
We run a prayer group that meets weekly to pray for our families who request it and welcome all who are interested in joining us.
Our resident chaplain is a Church of England minister. Our lead therapist, (a qualified Low Intensity Psychological therapist, Christian counsellor and Clinical Psychologist in training), our Pastoral Care counsellor and our non-faith counsellors are registered members of the British Association of Counselling and Psychotherapy (BACP). Our spiritual support team also have experience of working with non-faith communities to explore meaning of life and address difficult existential questions.
NOTICE: We have resumed our service including 1:1 home, hospital and community visits. Please call us to speak with someone.
Giving you tangible support where it counts
PLEASE NOTE: We believe practical support is an important aspect of your family’s holistic wellbeing. We will listen to you and offer one or more of the following support services as needed:
Meeting with the NHS teams caring for the Child or Young Person and encouraging our families to form more positive relationships with them. This is important to reduce the feeling of ‘them against us’ and to develop better relationships around the child
Meeting with the child’s school and help liaise with academic/Special Educational Needs/Disability (SEND) leads on behalf of the child and their primary carers
Meeting with any extra curricular agencies identified as relevant to the child's wellbeing, on behalf of the child and as required by the child's primary carer/family
Meeting with other professional organisations identified as relevant to the child's wellbeing, on behalf of the child and as required by the child's primary carer/family
Please call us to speak with someone.
A Second Voice To Help You
We recognise many children and their families will feel overwhelmed with the rapid changes that occur at various points during the child's brain tumour or cancer journey.
We will work with the child's primary carer and with their permission, offer advocacy to:
Ensure that important wellbeing priorities are clearly articulated, understood, respected and reasonably acted upon. Where necessary, we help with letter writing, drafting email & correspondence on behalf of the child and their family.
Ensure that our children and their families can access vital resources and services to support their changing circumstances. This may include the child's education, children's services, disabilities, social services and benefits
Help our children and their primary carer's regain confidence in identifying and communicating wellbeing priorities (which may seem to be softer issues but are important to them) and learn to build positive relationships with the teams around them
Offer additional guidance based on the lessons learned from our lived experience and wider resource networks
We will offer a fair, honest and free support service to our children and their families.
Please call us to speak with someone.
DLF Cherry Blossoms
The Cherry Blossom was Dannie's favourite flower and in the Japanese culture, the cherry blossom is a beautiful and timeless metaphor for human existence. Here at the DLF, we share in this symbolism and recognise that every child is beautiful and timeless gift to their family.
Although more children with Cancer are experiencing better outcomes today, there are those rare situations when the best medical plans fail, complications arise or treatments don't work and the child sadly passes away.
Should this unthinkable outcome happen to a child diagnosed with a brain tumour or cancer, our service offers support to bereaved families who request this.
Whether you are a parent, sibling or close relative, our BACP/ACC counsellors offer bereavement counselling and can help you find the support you need to look after your emotional health and rebuild life when it feels most difficult.
You are not alone.
Please click on the button below to make a referral.
"Please
contact us
to speak with a member of our team."
___________________
Our Strategic Alliances
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.
Spiritual Wellbeing Support
Spiritual Wellbeing Support is so much more than 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. Returning to school will involve working with the child's hospital, local authority and schools to make special adjustments so that the child's new learning needs can be accommodated to enable them access the right school, with the right provision to meet their new circumstances.
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 controls their learning or cognitive behaviour has changed as a result of the brain tumour or neurological cancer diagnosis.
Please click on the button below to make a referral and speak with us for further information.
"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"
(M - DLF Mum, 2023)
We recognise that for many parents, a child presenting with Special Educational Needs and Disabilities (SEND) is additional life changing occurrence that can feel like a minefield of new adjustments and learning for the child, their parents, siblings, friends and family carers. You Are Not Alone.
Our parents have told us that navigating the SEND pathway with school support is still tricky, whether it involves securing school support, Educational Health Care Plans (EHCPs), transitioning from a mainstream to a special needs school or high school to college. In 2023, we will begin a series of online and face-to-face SEND workshops to educate, coach and empower our parent and family carers to help them access and navigate this pathway with confidence. We are passionate about making a difference in the lives of our children and their families and will offer free sessions. This year as part of Brain Tumour Awareness Month, we organised our
first workshop
on the 25th of March 2023 with attendance by our friends from the
Hillingdon Special Educational Needs & Disabilities Information And Support Services (SENDIASS)
team. Recording to follow.
March is brain tumour awareness month and this year, we began a series of hybrid workshops to educate the parent/primary carers of our Children and Young People diagnosed with brain tumours or other cancers on the SEND pathway.
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 controls their learning or cognitive behaviour has changed as a result of the brain tumour or neurological cancer diagnosis. Recording to follow.
Cherry Blossom
Childhood Brain Tumour Bereavement Support
"You Are Not Alone"
...for when the unthinkable, the inexplicably and the incomprehensible happens.
We are happy to be there even silently by your side.
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, conferences and discussions with key opinion leaders to co-develop solutions to improve children's palliative care outcomes and contribute towards better childhood brain tumour research. 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 proud 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 services.
Read the Children's Palliative Care Outcome Scale Newsletter 13
Our Academic PPI Involvement
Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation
The King's College C-POS research team works with multiple local and national stakeholders to pioneer the very best in cutting edge palliative care and rehabilitation by integrating research, skilled multi-professional care, and innovation in engagement and education.
Through Together for Short Lives, the DLF has the opportunity to provide provide on-going PPI to support the development of a wellbeing tool measuring symptoms and concerns in children with life-limiting and life-threatening conditions
This brilliant piece of research aims to capture outcomes across the full (holistic) dimensions of wellbeing care - physical, psycho-soical & spiritual/existential outcomes, during the child's care to enable :
1. families to prioritise & express their outcomes of care with their healthcare professionals
2. clinicians to conduct more through assessment and monitoring &
3. commissioners to remain patient centred and CYP outcomes based
Newsletter-5, Newsletter-6, Newsletter-7, Newsletter-8, Newsletter-9, Newsletter-10, Newsletter-11
Exploring Parents Experience & Perspectives of Advance Care Planning (ACP)
Through Together for Short Lives, the DLF has an opportunity to work with Karen Carr (PhD Researcher, Institute of Nursing & health Research).
This project is part of a larger study aiming to improve how health professionals start advance care planning conversations with parents of life limited/life threatened children.
The purpose of this part of the study is to explore parent experience of when advance care planning for their child was started and to identify ways health professionals and/or parents can be helped to start the paediatric advance care planning process.
Objectives: Primarily to understand:
1. What went well
2. What could be improved
3. Anything that can help health professionals start the conversation and encourage parents to start thinking about the decisions which may lie ahead
Through Together for Short Lives, the DLF supported the recruitment effort to source carers within DLF Families who were interested in this research and had:
• Started discussions on advance care plans
• Started decision making about advance plans
• Started writing an advance care plan
Transitioning from Paediatric Intensive Care Unit (PICU) to Adult Intensive Care Unit (ICU)
The transition of children with life limiting conditions and their families from PICU to adult ICU has increased in frequency and has its own set of challenges.
The Intensive Care Society and the Paediatric Critical Care Society (PCCS) are developing some standardised guidance in this area.
The purpose of the group is to develop national guidance that builds on the pioneering Transitions Pathway guidance developed and used in Yorkshire and Humber. There is an increasing need for such guidance as there are many more children with complex medical and social needs moving into Adult critical care.
Through Together for Short Lives, the DLF is a lay representative on the working party, supporting the writing group to ensure relevant concerns and priorities from a patient/family perspective are considered.
VOICES -C Study
STUDY TITLE:
VOICES-C: Understanding the views of bereaved parents and health professionals of a questionnaire designed to evaluate the palliative care services for children at End-of-Life
Through Together for Short Lives, the DLF has an opportunity to work with Louise Worswick (research Fellow, School of Health Sciences) to improve this research study & provide insights on a questionnaire measuring the quality of care in children towards the end of life.
The research team are working with researchers at the University of Southampton (led by Dr Anne-Sophie Darlington) to develop the questionnaire and speak to bereaved parents for comment on the questions within.
Objective: to understand if the questions in the questionnaire are easy to understand, has anything is missing & to improve it for future use.
The research questionnaire is detailed and inclusive of parent and siblings, different demographics and various care options available to the child and family at their End-of-Life
Read the KCL C-POS Newsletter Issue 13
