Children’s charity launches UK’s first “Sibling Toolkit” to support the brothers and sisters of youngsters with cancer

Children’s charity Tom’s Trust has funded and launched the UK’s first Sibling Toolkit to help the brothers and sisters of children with cancer, who are often left feeling ‘sad, angry and lonely’.

The expert 40-page toolkit was written by the neuro-oncology psychology team at the Great North Children’s Hospital in Newcastle, over 18 months in consultation with other experts and families around the country.

It is the first of its kind in the UK to address the ongoing challenges and needs of children who experience the trauma of the diagnosis, treatment, after-effects, and sometimes bereavement of a sibling from cancer.

Tom’s Trust is a Cambridge-based charity which provides mental health support and practical help to children and young people with brain tumours, as well as their families, currently working across East Anglia, the North East and the North West.

Rebecca Wood, CEO of Tom’s Trust, said: “We are so proud to have developed the Sibling Toolkit, because it’s a recognised long-term gap in the support of families facing childhood cancer. The toolkit initially focused on the siblings of children with brain tumours because of our charity’s remit. However during the course of developing the manual, it was evident that this is desperately needed to  support the siblings of children with all types of cancer, so we wrote it in a way that allowed us to help as many families as we possibly can.

“We had so many families tell our team that the needs of siblings was a huge issue; trying to look after your poorly child in hospital while still trying to keep some normality and routine for their siblings. It is so hard to give all the children the attention they need as well as trying to help them understand what is happening,  while coping with the emotions for the whole family and practical challenges of separation with hospital stays.

“The immediate family cannot do it all alone and they shouldn’t have to. The issue is that others may not know how to help or how much that help is needed by the siblings at a traumatic time when they can’t easily get it from their parents. The toolkit is a guide for key adults within their family and friendship circles, as well as professionals in their lives like teachers, to have the confidence to step in and support these children. This in turn gives the parents and carers the reassurance that trusted adults can support their other children at a time when they have no option but to focus on their poorly child. It’s a whole-family approach which has always been at the forefront of what we do at Tom’s Trust.”

Debs Mitchell, Co-Founder of Tom’s Trust, lost her son Tom to a brain tumour at the age of nine in 2010. She said: “Tom’s sisters, Maddy and Evie, spent a lot of time at the hospital while he received medical treatment, from disrupted schooling to weekends and sometimes months in hospital where Tom was confined to one room due to his low immunity. Siblings are often left feeling confused, anxious, sad, angry and sometimes traumatised by what they see, but resources from all adults around them are naturally given to the unwell child even though their world is also being turned upside down. Siblings desperately need the help of professionals to support them as they navigate this difficult time and parents are often so traumatised themselves they are unable to support their other children.

“This document would have made an enormous difference to our girls through Tom’s treatment when their lives were turned upside down, it’s an incredible addition for families. It will provide adults with everything they need to support children after learning of a sibling’s diagnosis, during their treatment, through recovery and disabilities, and in some cases through bereavement.”

Sarah Verity, Tom’s Trust Paediatric Neuropsychologist, who led the project, said: “When a child is diagnosed with any kind of cancer, the lives of their family and friends also change. As parents and carers try to juggle the needs of a sick or disabled child alongside other commitments, siblings can become lost in the aftermath of diagnosis. There are minimal services for the support of siblings in the UK, and psychology provision is scarce. Alongside Tom’s Trust we have worked to bridge some of this gap, producing a toolkit to support siblings of children with a brain tumour where they do not have access to formal psychology services. We are enormously grateful to Tom’s Trust for giving us the opportunity to work alongside colleagues and families across the UK to create this toolkit. This could not have been achieved without the support of their team and funders.”

What it means to our families:

Camille, 16, from Woodbridge, Suffolk, was diagnosed with an Ependymoma brain tumour in 2009, at 26 months-old. Camille underwent two years of gruelling treatment that included high-dose chemotherapy, three brain tumour resections and a programme of aggressive radiotherapy. At such a young age, this had a devastating effect on Camille and has impacted the whole family, including her sister Lucia, 18, and Jude, 12.

Camille’s mum, Hayley Shave, said: “When Camille was diagnosed with a brain tumour at 26 months, it wasn’t just her life that changed, but our entire family’s. The hardest part was seeing the impact on her sibling, Lucia.  Lucia struggled with our constant absences, feeling lost as we shuttled between home and hospital. For Jude, who was born after Camille’s treatment ended, understanding why Camille was different was a complex, emotional challenge.

“During this time, we desperately needed a resource to help our children cope with the emotional turmoil of having a seriously ill sibling. That’s why Tom’s Trust’s initiative to create a ‘Sibling Toolkit’ resonates so deeply with us. It’s a crucial resource we wished we had, offering guidance and support to siblings in similar situations.

“This toolkit isn’t just a resource; it’s a lifeline for families like ours. It acknowledges the silent struggles of siblings and the complex family dynamics in times of illness. We’re immensely grateful to Tom’s Trust for recognising and addressing this gap, providing comprehensive care and support not just to the patient, but to the entire family.”

The charity held a launch event for the Sibling Toolkit at the Great North Children’s Hospital on Thursday 25 January, which was attended by families, clinicians, psychologists and other professionals.

You can download the toolkit on the Tom’s Trust website: www.tomstrust.org.uk/sibling-toolkit