Why We Do, What We Do
Our Problem Statement
The holistic wellbeing support of a child diagnosed with a brain tumour and their family is very important in the provision of Palliative Care and to the dedicated, specialist, Multi-Disciplinary Teams (MDT) caring for that child. However, resource shortages including time, staff availability, awareness, opportunities or expertise can make this more challenging to achieve for every patient at their point of need.
We surveyed a small selection of children diagnosed with brain tumours and their families and our results confirmed that majority of the families surveyed have experienced this problem scenario. This has become the reason why we do what we do. It is shaped by our lived experience, the real life stories of many of our DLF families and friends and the quality improvement analysis we have carried out to better understand this problem.
We recognise that in some regions, holistic wellbeing support is not easily available and can be limited by resource challenges or what support service is available in that region. In some regions, the opposite is the case and widespread awareness of childhood brain tumours makes it easier to access support.
We are aware of the enormous strain and pressure the current COVID-19 pandemic has placed on our NHS and the demand for its service. This has inadvertently exposed a deeper gap in wellbeing support and its effect on children receiving life saving cancer treatment.
The DLF aims to contribute it's quota to the team effort that is required to ensure that the wellbeing needs of Children & Young People diagnosed with brain tumours and families are available and easily accessible. This is the fuel our that drives our passion.
We offer a complementary service that offers a holistic approach to support the wellbeing needs or priorities of Children and Young People diagnosed with brain tumours and their families.
"William was diagnosed in June 2019 and had surgery in July 2019. It was hugely traumatic for everyone. William was 3 at the time so thankfully, the lasting impacts of being in hospital are less likely to impact him BUT me and his dad almost hate each other so I had to deal with him on top of being a single mum to 3 kids and William's brain tumour."
According to the National Institute of health and Care Excellence (NICE), childhood brain tumours are the biggest childhood cancer killers in the UK. Sadly, they cause 1 in 5 child cancer deaths and are unfortunately one of the least survivable childhood cancers around today.
Around 598 children and young people aged 19 and under are diagnosed with a brain tumour each year in the UK (Brain Tumour Charity). Childhood brain tumours are complex cancers that differ from other childhood cancers. Brain tumours in children cause a more rapid decline of normal bodily functions and introduce permanent complications or disabilities in the child, often within a short period after diagnosis. In some cases, drug response to brain tumours in children is frequently limited because of the blood brain barrier which acts as a filter that blocks both harmful substances and some types of drugs used in chemotherapy from entering into the brain.
These are some of the complex reasons that distinguish childhood brain tumours from other childhood cancers. More investment into scientific Research & Development is necessary to increase the knowledge and understanding of the occurrence of brain tumours in children, so that better and safer treatment can be identified and applied earlier.
"We don't really have any support - both grandparents live quite a way away (my in-laws over 4 hours away, and my mum over an hour away). We have support bubbled with my mum for occasional help, but Covid makes this all really tricky. Just hard to know how to practically keep going with an 18month old (with a brain tumour diagnosis and focal seizures) and a 4 year old! Let alone trying to process the emotions."
We are fortunate to live in a country where End-of-Life care is world class. Still, the diagnosis of a child or young person with a brain tumour is devastating news to the child and the family around them. Without support, this feeling of devastation can leave families feeling disconnected from the rest of society, feel more overwhelmed and place the family at risk of longer term trauma due to unaddressed complex emotions.
Our partner charity Together for Short Lives, defines Palliative Care for children and young people with life-limiting conditions as an "active and total approach to care, from the point of diagnosis or recognition, embracing physical, emotional, social and spiritual elements through to death and beyond. It focuses on the enhancement of quality of life for the child/young person and support for the family". This is a welcome definition that addresses the broader elements of what many children and their families experience on this difficult journey.
The Daniella Logun Foundation offers a holistic wellbeing support service that is shaped by the lived experience of Daniella's family through Dannie's diagnosis and beyond. We aim to provide other children and their families with the support that was not immediately available to Dannie's family when Dannie was diagnosed with a brain tumour. This includes a multi-dimensional approach that explores the Physical (practical & social), Emotional & Spiritual needs or priorities of our children and their families.
We view the individual as complex beings that exist in an interconnected 3 dimensional state of mind, body and spirit. Emotions are powerful experiences that connect the mind and body and become more defining when a person is faced with severe trauma/crisis. The individual can experience new emotions but feel unequipped to address, identify or express these feelings in a safe way. Our 3 dimensional approach is designed to have a greater reach and aims to help our families identify more of these complex emotions that may be found entangled with all the new challenges they are learning to face. We meet our children and their families where they are and offer a range of services through our experienced wellbeing team and professional counsellors.
"...one thing I was wondering about is how to manage working with this type of situation - I don't know what to say to my work (I only work 3 days per week, but in a senior position, so this is quite tricky). Do other parents manage to keep up with appointments and all the care for little ones in these situations, whilst also working?"
Telephone: (+) 44 (0) 1895 622 547
Mobile: (+) 44 (0) 7760 411 888
Email : enquiries@thedaniellalogunfoundation.org
Website : www.thedaniellalogunfoundation.org
Twitter : @DaniellaLogun | Instagram : daniellalogun |
Facebook : @TheDaniellaLogunFoundationDLF
YouTube: @daniellalogunfoundation2379
The Daniella Logun Foundation (DLF).
Registered Charity Number: 1189746 (England).
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