x

Our Sibling Toolkit – one year on

Posted in: Informative, News
Tags:

This time last year we launched our Sibling Toolkit – the UK’s first ever resource designed to support the siblings of children with cancer.

The toolkit addresses the ongoing challenges and needs of children who experience the trauma of the diagnosis, treatment, after-effects, and sometimes bereavement of their sibling from cancer and is designed to help key adults offer support.

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, and the project was led by Dr Sarah Verity.

Toms Trust Sibling Toolkit

The Sibling Toolkit has gone global

Since the launch, we’re thrilled to share that it has been downloaded over 1,000 times and has been taken global by Dr Sarah Verity, who presented the toolkit at the International Symposium on Paediatric Neuro-Oncology (ISPNO 2024) conference in Philadelphia.

The response to the Sibling Toolkit

We received so much thanks after the launch of the toolkit and notes from siblings and parents who could see how much the toolkit would have helped them along their cancer (sibling) journey. Here are a few:

“It is so hard on everyone involved. Everyone else focuses on the child who is ill, always asking how they are, which is lovely, but the siblings get overlooked. I made a concerted effort every time anyone asked how he was, to bring her into the conversation as well. I am glad the response has been amazing for you. What you are doing is so important”

“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.”

One of the families we support said:

“Freddie was four years into the journey of living with the effects of his brain tumour when Dexter was born. It has been a part of Dexter’s whole life. It is only in the last couple of years I’ve told him why Freddie has to go to hospital.

“It’s really hard when I can’t be at things like school drop off, pick up or school assemblies as hospital appointments come before anything. Since Freddie now has more ‘normal’ appointments to attend, such as check-ups on his speech and language disorder and the Methylphenidate clinic, Dexter sometimes questions why Freddie has to go into hospital as he’s not poorly. We explained about what Freddie had, that he’s better now but still needs his check-ups. It’s so hard to explain without making it sound really scary.

“I love the sibling toolkit. Normally after an appointment we are slightly deflated and Freddie’s normally more anxious/and very quiet. When Dexter sees Freddie like that he will worry. Talking to Dexter about the toolkit has helped Dexter to understand a little bit more.  

“I think it’s a great resource for teachers – it would help a lot of siblings of children that attend hospital a lot. Their mood can change, they can be distant, worried, and upset for their sibling – even though it might only be a check-up but to them it’s another hospital appointment that their brother/ sister must attend, and they sense the worry and anxiety within the house. If key adults in a sibling’s life can just understand what it must be like for them it would be a huge help, for the child and the wider family.”

The importance of the Sibling Toolkit

Dr 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.”

Rebecca Wood, CEO of Tom’s Trust, added: “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. This toolkit is a lifeline for families navigating the unimaginable and a vital step toward ensuring no child is left without support.”

Future toolkits and resources

Is there a toolkit you would like to see created by our team of clinical psychologists that will help children with brain tumours, their families, schools and clinical team? We are constantly developing new material for our Resource Hub and in the planning stages of several new toolkits. Do get in touch with us if you have anything you would like to request at info@tomstrust.org.uk

 

OUR SIBLING TOOLKIT

Change this in Theme Options
Change this in Theme Options