Siblings of seriously ill children deliver government letter calling for more support

Siblings of seriously ill children supported by Rainbow Trust Children’s Charity delivered an open letter to government ministers calling for better recognition of the value of sibling support this week.

Signed by more than 200 people, the letter asks Care Minister Caroline Dinenage MP, and Children and Families Minister Nadhim Zahawi MP, to ensure all children and young people with seriously ill brothers and sisters have access to the support they need.

Siblings of seriously ill children deliver government letter calling for more support
Photograph credit: Neeraj Kale at MadOverPhotos

To mark Siblings Day this week, Eddie, 13, Rose, nine, and Hannah, 10, whose families are supported by Rainbow Trust, delivered the letter to the ministers in Whitehall alongside Zillah Bingley, Chief Executive of Rainbow Trust which supports families with a seriously ill child.

Rainbow Trust has eight care teams of Family Support Workers across England including two in London providing practical and emotional help to families at home, in hospital and in the community, wherever they can to make life a little easier.

Sibling support from Rainbow Trust can help children learn important coping mechanisms, providing an outlet for their feelings. Practical support can help them get to school and keep up with homework. Meeting other children in similar situations can help them feel less isolated and ensure they are able to cope both now and in the future.

Hannah, whose brother has a rare genetic condition, said Rainbow Trust had made a big difference:

“I wanted to help deliver this letter so that more brothers and sisters of really ill children like me can be helped by Rainbow Trust. They really listen to you and make things better.”

Many of the parents and professionals and supporters who signed the letter left moving comments.

One parent wrote:

“Support for siblings is absolutely needed. It’s crucial and Rainbow Trust is a part of our family’s recovery as a whole. I do hope attention is paid to this for the sake of so many on this extraordinary journey.”

Another wrote:

“Without Rainbow Trust, my daughter would have spent hours in hospital while her brother was ill and needed my full attention. It is also a good way for siblings to get to know each other and know that they are not the only ones with a poorly brother or sister.”

The letter was created as a result of Rainbow Trust’s report, See Us, Hear Us, Notice Us: The case for supporting siblings of seriously ill children, published in December 2018, which highlighted that preventative support can reduce the risk of children experiencing a long-term negative impact on their mental health and education.

Rainbow Trust CEO Zillah Bingley said:

“We delivered a powerful message to ministers about the huge value of supporting siblings of seriously ill children, whose needs are all too often overlooked.

“More and more children are growing up with a seriously ill brother or sister as a result of medical advances, but the services to support these siblings are poorly funded. Many local authorities have had to reduce funding as budgets are squeezed.

“We urge ministers to support these siblings, not least because it can prevent future costs for public services by reducing the likelihood of more serious consequences for their mental health, education and overall life chances.

“Ministers must ensure sibling support is funded within child palliative care services, and support schools to meet siblings’ needs.”

Rainbow Trust’s report has been warmly welcomed and the need for sibling support has been raised by several MPs in parliament.