See Us, Hear Us: Supporting siblings of seriously ill children

See Us, Hear Us:  Supporting siblings  of seriously ill children

As many parents who read our articles can tell you, when a child has a serious illness, their normal family life is hugely disrupted. Medical appointments, caring responsibilities and fitting in work too means family time becomes more precious than ever.

The children's charity, Rainbow Trust pairs each family it works with with an expert Family Support Worker to help them at home, in hospital and in the community to make life a little easier. Today, Sophie Dodgeon, Policy and Campaigns Manager at Rainbow Trust tells us how they help

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Helping children thrive when their sibling has a serious illness

A child’s life changes dramatically when their brother or sister is diagnosed with a serious illness. A parent will have less time to focus on them. Routines have to change, and a healthy child can struggle to understand what’s happening. Many siblings experience feelings of isolation, anger, jealousy, guilt and anxiety.

If you’re the parent or carer of a child with a serious or life threatening condition, who also has healthy siblings, none of this will not come as a surprise to you at all. 

But outside of families directly affected, the needs of siblings are not well known. A recent report is trying to change this. See Us, Hear Us, Notice Us, from Rainbow Trust Children’s Charity, which supports families with a seriously ill child, makes the case for children and young people to have access to high quality sibling support, as and when required. This may be practical or emotional, one to one or group support. Without it, children could experience a negative impact on their education, mental health and wellbeing. 

This is especially important because demand for sibling support has never been higher, yet funding has never been lower. With medical advances enabling more seriously ill babies to survive birth, and more children to live longer with their complex conditions, more children are growing up with a seriously ill brother or sister. 

This rising need for support is reflected in a survey of children’s hospices in England. More than 70% of children’s hospices who responded said the demand for sibling support has increased over the last three years but only a third said that they can ‘always’ meet demand.

Clare Finch from Stockport explains how her family were affected by her son’s cancer diagnosis when he was eight-years-old:

“The last few years have been indescribable, our world literally fell out from underneath us when my son, Adam, was diagnosed with a brain tumour and an aggressive brain and spinal cancer. Whilst it was horrendous trying to help him through all the initial treatment and trying to organise our new life in some way, one of my biggest worries was Megan, his big sister, who was 12 at the time.

“I genuinely think that brothers and sisters have the hardest time of all when a child is seriously ill. They have to deal with sudden separation from their parent(s) and their sibling, and, in Megan’s case, moving out of the family home to stay with her Grandma and Grandad. We tried to keep some kind of normality for her by insisting she go into school but very often her head was with her brother in hospital! Children can become very isolated as their friends cannot possibly understand what they are going through and arranging time outside school for social activities can often prove impossible.

“Megan frequently saw Adam in horrendous pain and, although I tried to protect her from it as much as possible but she was often rushed away from the hospital as Adam suddenly deteriorated and needed emergency treatment. These children see their siblings in life threatening situations and some that lead to a loss of dignity. We often saw brothers and sisters running up the ward to get sick bowls or incontinence pads to help their brother or sister.

“Siblings’ needs are often side-lined due to the impossible situation they are in as a family. And because parents are trying their best to protect them from seeing the horrors of it all, they can feel isolated and that something is being kept from them. Even being at home isn’t a rest, and many become a second carer. Plus, they have to deal with sudden hospital admissions, often in the middle of the night, which brings that panic and sense of uncertainty back to their lives.

“Megan didn’t want to add to my worries and became very distant and closed off but as soon as Callie, our Rainbow Trust Sibling Support Worker, became part of her life, I saw my little girl again. She had someone to share her worries with, someone to talk to and someone who was there for her.

“Sometimes you can’t talk to family members as they are too close to what’s going on. The Sibling Support Worker helped to reduce her social isolation as she gave Megan an outlet for her troubles, she could liaise with the school on my behalf and also helped Megan attend her book club and see her friends outside of school.  Also, by having holiday activities and days away, Megan was able to link up with other children in similar circumstances. She has made some really good friends and being amongst other children that just ‘get it’ makes her feel less alone.

“As a mum, I felt such a relief knowing that someone was looking out for her. The work that Callie did and the support she gave our family allowed us all the space to breathe for an hour or two. It improved the health and well-being of the whole family. It lifted my constant worry about Megan and gave her an outlet to talk about all her worries.”

Read more about the report and add your name to Rainbow Trust’s open letter urging government action here.

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Tania Tirraoro

Founder, CEO at Special Needs Jungle
Founder of Special Needs Jungle. Parent of two sons with Asperger Syndrome.
Journalist & author of two novels and a guide to SEN statementing. PR & social media expert. Rare Disease & chronic pain patient advocate.
Tania Tirraoro
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