Charity supports siblings of ill and disabled children

Siblings of children with life-limiting conditions can often miss out on activities their peers enjoy

As schools break up for the holidays there are some children whose summer plans look a little different - because they have a sibling with complex medical needs.

The charity SIBS, which supports brothers and sisters of disabled and seriously ill children, recognises that siblings can face additional mental health challenges.

Jessie May, a Bristol-based charity which offers palliative home care to families, is organising summer events across the West, specifically designed for the whole family to enjoy.

“It’s a normal developmental milestone to want to be like your peers," said child psychologist, Dr Sadie Thomas-Unsworth.

'Formative years'

"The brothers and sisters of a child with a life-limiting condition have a very different childhood to other children," said Jo, a Bristol-based mother of three.

"No pushing them on the swings, or taking them to an amusement park, because there’s a child whose needs supersedes theirs."

The charity helped the family make memories before Stella died

Jo's daughter Stella was born in 2009 with a life-limiting condition, before she and her husband Brad went on to have two more children, Lexi (14) and Felix (11).

Jo said knowing Stella's time was limited made it even more important to make lasting memories.

However, she recognises "the formative years" of her other two children were "heavily impacted" by Stella's medical requirements.

Stella sadly died last year, aged 14.

“Jessie May gave us the opportunity to make at least some of the memories that other families might take for granted,” Jo added.

“Lexi and Felix have had a different childhood from many other kids, but the care shown to Stella meant that they didn’t miss out altogether."

Ms Thomas-Unsworth says the siblings of children with complex medical needs often experience high levels of anxiety and behavioural difficulties

Ms Thomas-Unsworth, an NHS psychologist based at Southmead Hospital, said despite the emotional toll it takes, siblings of children with complex medical needs often form an unbreakable bond within their "close family units".

"They get to experience a particularly special type of connection," she said.

"They get to learn compassion and kindness in a way that many of us wouldn’t have those experiences as children, because they see the difficulties that their family are trying to negotiate."

The charity provides palliative care and support to children with life-limiting conditions, and their families, in their own homes

Jessie May is the only provider of in-home palliative care in the South West, supporting children in Bristol, Bath, Somerset, Gloucestershire and Swindon.

The charity's specialist nurses care for seriously ill children, whom they get to know well over the course of their lifetimes, while parents can spend time with their other children without worrying.

"The Jessie May service means that you don’t have siblings doing their homework in a hospital setting, or missing out on football or dance practice because their brother or sister is ill,” said charity CEO, Daniel Cheesman.

“Care in the home gives families a chance to be families."

If you have been affected by any of the issues in this piece, please contact specialist support charity SIBS on 01535 645453, or visit their website.