Rainbow Trust

Joanna McHugh • Oct 26, 2022

Bringing joy to families when they need it most

An estimated 86,625* children in England are living with life-limiting or life-threatening conditions. Rainbow Trust exists to provide a lifeline for families who are facing the very real possibility that their child may die.

Rainbow Trust pairs each family with a dedicated Family Support Worker to help them face and make the most of each new day. They recognise that every family is unique, and no two families’ challenges are the same. The support offered takes many forms from keeping a seriously ill child company during hospital stays to give parents time to spend with their other children, to organising fun activities for the whole family to enjoy, to emotional support through bereavement and grief. See this video to learn more about the support and what it means to families https://youtu.be/nmYT-biCcps.

The James Tudor Foundation has been supporting the work of Rainbow Trust since 2007 with 12 grants totalling over £200,000. Most recently our grants have enabled Family Support workers in the South West to deliver this vital support and in the past six months alone, the team have supported 82 families in Bristol, Bath and North East Somerset.

The COVID-19 pandemic was especially difficult for families with sick children who had to isolate for lengthy periods of time with restricted access to external support. Rainbow Trust adapted quickly to offer online and telephone support to ensure that families were still able to access the emotional support they needed even when practical support was not possible. They were also able to continue to offer urgent practical support such as collecting prescriptions and delivering shopping to families who were unable to do so themselves.

Most families eagerly switched to remote support and have commented that the consistency of support at such a tough time made an enormous difference to them. Through fun weekly video calls, parents received respite and children were able to have a welcome distraction from the boredom and isolation they were experiencing. To combat the isolation being felt by many families Rainbow Trust also set up virtual coffee mornings for parents and school holiday groups for children.

As lockdowns eased, the return of face-to-face support was welcomed. South West Family Support Worker Charlotte said,

“As some families had not been out together at all during lockdown, I was able to help them to get out of the house and start visiting all the places they hadn’t been to in so long. Children were so excited to be back visiting parks and forests.”

Despite this positivity at getting out and about, Rainbow Trust’s latest survey showed that the mental health of the families they support is a key area of concern, with 73% saying that their mental health is worse than it was before the pandemic. The cost-of-living crisis is also disproportionately impacting on families supported by the charity because, in many cases, at least one parent has had to give up work to care for their seriously ill child. Family Support Workers have therefore been focusing not only on providing fun experiences for children, but also in helping to reduce stress and providing emotional support to the whole family, giving them a chance to share their worries.

Rainbow Trust continues to seek new ways to reach more families and provide much needed emotional and practical support to all families with seriously ill children. The success of online provision during the pandemic, and rising demand for services, has led to the piloting of a new project to test the benefits of offering online support to families who live outside their support areas and would not normally be able to benefit from their services. Over the next year, Rainbow Trust will monitor and evaluate the ongoing demand for this type of support post-pandemic, and the feasibility of setting up an online support team.

The James Tudor Foundation is proud to have supported Rainbow Trust’s work over the last 15 years. Families with seriously ill children continue to face enormous challenges, but, thankfully, Rainbow Trust continues to be there for them – week in, week out.

Their compassionate and flexible support enables families to thrive, not just cope. Rather than being a crutch for the family, Family Support Workers like Charlotte become the glue that keeps everyone close, helping each family member to face challenges while cherishing their time together.

*^University ^{of York, Professor Lorna Fraser 2020}

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