Losing My Place: The Reality of Childhood with a Brain Tumour

‘Losing My Place: The Reality of Childhood with a Brain Tumour’ is the third report from our Life with a Brain Tumour project – the most comprehensive study of its kind. All three reports provide an extensive evidence base to inform improvements and innovations across our services.

They will be used to help us ensure policy makers, healthcare professionals and the public understand the realities of a disease that affects people of all ages.

Losing My Place is based on a survey of almost 300 young people and their parents following a childhood brain tumour diagnosis.

These contributions provide a unique insight into the suffering that childhood brain tumours cause for children, young people and their families.

They tell stories of courage and perseverance when a child is forced to miss out on so much of what the world has to offer; when they are alone whilst others are making friends, hatching plans and falling in love; when they cannot keep up in school and life at home is forever changed; when they find they are facing death, before their life has really begun.

The report also examines the impact on the lives of carers and other family members − they too may face adjustment to a new position within the fabric of family and daily life.

At the age of two, Dylan was diagnosed with medulloblastoma – the most common form of high-grade childhood brain tumour.

The tumour and treatment have left Dylan, now four, with permanent health problems and reduced his life expectancy. The impact on his family has been profound.

Among the children and young people who responded:

• More than eight out of ten (84%) said their brain tumour had made them feel lonely
• Seven out of ten (70%) said they had difficulty doing things outside the house
• More than a third (36%) of those who had symptoms said they experienced difficulties with thinking, concentrating and processing information
• Three out of ten of those with symptoms reported changes to their personality

Among parents and carers:

• Almost three quarters said their child’s brain tumour had had a moderate or severe impact on their own mental health
• 90% said they felt lonely or isolated as a result of their child’s brain tumour diagnosis

The report contains content which some readers may find distressing.

The research has provided the evidence to illustrate what we have been hearing first hand from those affected and has led to ‘Defeating Brain Tumours’ our five year strategic Plan.

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Losing My Place – PDF

This report provides a unique insight into the suffering that childhood brain tumours cause for children, young people and their families.

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