Last week I met with Professor Lorna Fraser who is a world leading researcher in child health and palliative care at Kings College London.
I wanted to find out more about the study 'Make every child count' led by Lorna and York University. The study shows a significant rise in children with life limiting, life threatening conditions. We talked about the increase in children with rare and medically complex conditions and the lack of support available to these children and their families whilst in a hospital setting.
*"The research shows that the number of children in England with life-limiting or life-threatening conditions increased to 86,625 in 2017/2018 compared to 32,975 in 2001/2002." This number is expected to continue to rise to an estimated 116,000 in 2030.
Please take a look at the Prevalence Study_Web_003.pdf (york.ac.uk) which evidences the need for our charitable support as this highlights an increase in rare and medically complex diagnosis in children.
This conversation also linked with the importance of family support workers and how parents are often overlooked when caring for a seriously ill child. We discussed Lorna's study into 'Health of mothers with a child with a life threatening condition' and considered what excellent charitable support would look like in meeting the needs of parents/carers in hospital.
We spoke about how the term 'palliative care' is often mis-understood, being confused with end of life care... which can be a frightening word for parents to hear. Palliative care is aimed at improving the quality of life for children with a life threatening diagnosis addressing their physical, psychological, social and spiritual needs. When palliative care is delivered effectively it also supports the wider family caring for the child. We looked at how, as a charity, we could support the delivery of excellent palliative care for children with life threatening, life limiting conditions in hospital.
I have shared before how, last year, I took part in research carried out by Martin House around spirituality and the death of a child. This is now used within the training material for staff at the hospice.
Millie was incredibly spiritual, Lorna and I spoke about the importance of identifying the spiritual needs of a child with a life threatening or life limiting illness and the importance of the child being heard.
I am thankful to Lorna for giving up her time to speak with me and share her knowledge. I am passionate that the Millie Wright Children's Charity stays true to its purpose to 'address inequalities in charitable support for children with a life threatening non-cancerous diagnosis' so that ALL children and their families can access hands-on charitable support that meets their needs.
In summary, when looking after a child in hospital with a life threatening, life limiting illness it can feel as a parent that the focus is overwhelmingly medical. It is really important that we, as a charity, complement and enhance the hospital teams to support the mental health, wellbeing and spiritual needs of the child and their families.
Ceri Wright (Co-founder)
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