Date published: 06 December 2022 by Katie Inglis
Rainbow Trust’s most recent team to open is a team in Liverpool which will not only offer support to families living in the city but also expand across the North West and into North Wales. This is a key development in our expansion plans and we are very fortunate to have secured funding for this team from the Kentown Wizard Foundation. Noting that the Labour conference was being held in Liverpool at the end of September we took the opportunity to attend to raise awareness of our new Liverpool Care Team. This is an exciting and vital development in an area that has a high incidence of childhood life-limiting conditions standing at around 75 per 10,000 making the need for Rainbow Trust’s support clear.
The conference also gave us an opportunity to engage with Members of Parliament and discuss the significant difficulties that the families we support are facing as a direct result of their child’s condition as well as the ongoing cost-of-living crisis. Families with a seriously ill or disabled child are disproportionately affected often facing a substantially higher financial burden as a result of having to power lifesaving medical equipment, higher food costs due to hunger inducing steroids, or extra washing due to incontinence issues. In addition, families with a seriously ill or disabled child can face stark transport costs because of regular hospital visits often far from home and hospital parking for long periods of time. These costs are unavoidable and leave no room for cutbacks.
Research by the Family Fund in 2021 found that 85% of families with an ill or disabled child had £500 or less in savings and 7 in 10 reported having no savings to fall back on whatsoever[1]. This is true of many of the families we support, so we urged ministers to sign our pledge card calling to prioritise financial support for families with a seriously ill child to prevent these families reaching avoidable crisis situations. We were pleased to have over 20 ministers sign our pledge, and we look forward to working together with MPs across all parties to share our expertise and make sure the voices of the families we support are being heard.
Zillah Bingley, Rainbow Trust Chief Executive says:
We have been aware for some time that there are families in desperate need for the type of support Rainbow Trust provides in and around Liverpool. Establishing this new team in the city is very exciting and I am very grateful to all the people who took the time to attend our stand to talk about the importance of expanding our geographical reach.
We hear the impact the increasing cost of living is having first-hand from the families we support, with over 90% of respondents to our recent family survey saying that their financial situation is now worse off due to the increased cost-of-living.
Families should not have to choose between keeping warm or keeping their child alive and as we approach the cold winter months it is vital that the Government acts now to ease the financial burden for these families before it’s too late.
[1] Family Fund. (2022). Income Survey
