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 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.”
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.
Our families and their stories
Camille, 16, and her siblings Lucia, 18, and Jude, 12
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."
Aston, 13, and his siblings Mason, 20, and Mia, 16 (pictured with parents Karen Bush and Thomas Sullivan)
Aston Sullivan, 13, from Chester-le-Street, County Durham, was first diagnosed with a brain tumour in 2013, when he was just two years-old. During surgery 90% of the tumour was removed, with 10% being left attached to his brain stem. He has since faced a tumour regrowth three times, in 2018, 2020 and 2022 and has taken part in an ongoing clinical trial to treat the cancer, as well as other treatment such as chemotherapy. Over the years Aston’s journey has had a huge impact on his whole family, including his two siblings Mia, 16, and Mason, 20.
His mum Karen Bush said: “Mia was so young when Aston was first diagnosed but Mason was a lot older and it affected him in the early years. He had a panic attack every time he had a headache and thought he was getting a brain tumour. He was just filled with anxiety. The second time around is when it hit Mia and she understood more.
“When Aston was first diagnosed I didn’t feel like I needed any help but I did notice in myself that I didn’t want to leave the house or talk to people. People were ringing and texting and I wanted to be in my own little bubble. I probably did need some help and I did need more support as a mum to three. The Sibling Toolkit is such a brilliant way to ensure that care reaches the whole family, so that the right support is there for the siblings while the parents try to manage both their poorly child’s care and their own emotions. Trying to keep things normal for the family while dealing with a brain tumour diagnosis is incredibly difficult, and Tom’s Trust’s new toolkit is going to be such a positive thing for families going through this.”
Harry’s story, Emily’s big brother; told by his mum Sarah
When Harry’s sister, Emily, died after a very short illness with an incurable brain tumour, his life changed completely. Emily was just eight when she was diagnosed with a Diffuse Midline Glioma (DIPG) which grew aggressively, ending her life in less than two weeks after it was discovered in August 2022. Harry was just 11 years-old at the time.
Harry and Emily’s mum, Sarah Smith, who lives with her family in St Albans, Hertfordshire, said: “We were all left in shock, traumatised by Emily’s death and needing support. Luckily, a Tom’s Trust clinical psychologist was there to help us in those early, very dark days. We were told by Harry’s school that he would get bereavement counselling at school six months after Emily’s death but we wanted help and support for him immediately. Our Tom’s Trust psychologist was there to help Harry too, through us, but now there is also a toolkit that can be used as well, supplementing the counselling and face-to-face support.
“The Sibling Toolkit will be invaluable to support families faced with the same outcome as us. In the weeks after Emily’s death, feeling broken, we found the search for support and information on how to help Harry quite overwhelming and we didn’t know where to start. This toolkit will help families like ours in the future, having lots of helpful advice all in one place. It is an incredibly thorough, well laid out and much-needed resource and we are so pleased it has been created.”
Harry 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.”
