Cancer charity's toolkit aims to help the 'forgotten' siblings

Debs Mitchell founded the support charity Tom's Trust after her son, Tom, died at the age of nine

A charity has created a "Sibling Toolkit" to help "the forgotten children" whose brothers or sisters have cancer.

Debs Mitchell co-founded Cambridge-based Tom's Trust after her son died from a brain tumour in 2010, aged nine.

The 40-page toolkit, written by neuro-oncologists, aims to help siblings deal with diagnosis or death, and the charity claims it is a UK first.

Ms Mitchell said there was currently "a huge gap for sibling support".

The charity provides mental health support and help to young people with brain tumours, as well as their families, and works across the East, North East and North West of England.

The toolkit is intended to help children whose siblings have cancer

"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," said Rebecca Wood, head of Tom's Trust, which was named after Ms Mitchell's son.

"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."

Tom, pictured with his sisters Maddy and Evie

The Sibling Toolkit has been developed by specialists at the Great North Children's Hospital in Newcastle upon Tyne, in consultation with experts and families around the country.

The charity said it was "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".

'Lives turned upside down'

Co-founder of the charity, Ms Mitchell, from Saffron Walden in Essex, said: "They're simply the forgotten children in all of this.

"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.

"We weren't emotionally available for them.

"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.

"This document [the new toolkit] 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."

Camille said her brother and sister help support her through numerous hospital treatments

Camille, 16, from Woodbridge, Suffolk, has had 80 procedures under general anaesthetic to manage her brain tumour, and lives with her bother Jude and sister Lucia.

"They support me along the way and make sure I'm not nervous and stuff," Camille said.

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Lucia said: "You kind of have to cope in your own ways. There's no real time for being sad and stuff because you've always got the be the child which is the fine one - the grateful one who's got to be OK all the time."

Their mother Hayley Shave said having the toolkit before "could have changed the outcomes for how Lucia is coping now".

Harry (r) lost his sister when she was eight and he was 11

Emily, from St Albans, was eight years old when she was diagnosed with a diffuse midline glioma (DIPG) and she died two weeks later in August 2022.

Her brother Harry, who was 11 at the time, said: "Learning how to live without my sister is the hardest thing I've ever done.

"The toolkit will help others understand better what is happening to their sibling and how to process it all. It will help make sense of all the mixed emotions you go through and how other people can help children like me."

Sarah Verity, a paediatric neuropsychologist, who led the toolkit project, said: "There are minimal services for the support of siblings in the UK, and psychology provision is scarce."

Ms Mitchell added: "Our vision is to change the mental health provision in the UK forever."