Headlines and commentary on this issue is everywhere at the moment, and it is a difficult topic to write about with a fresh perspective or without adding to the sense of impending doom.
However, I thought it was important that I address the issue with a Lifelites lens.
It is widely acknowledged that inflation, rising bills and prices threaten to push families further into or on the brink of poverty. With Bank of England forecasts suggesting that the situation will get much worse still before it gets better, it’s clear that there are tough times ahead for the vast majority of us.
In our ‘Lifelites’ world, we are incredibly worried about families of children with disabilities and life-limiting conditions.
A study led by researchers at the Children’s Policy Research Unit (CPRU) a few years ago, showed how finances and living standards of families with a disabled child compare with other families. Their video which you can watch here, explains that families with a child with disabilities are considerably worse off than most.
Our partners at Together for Short Lives are predicting that these families will incur even higher costs than most. Research shows that families with seriously ill and disabled children are already paying almost double that of an average UK household on their energy bills. This might be due to life-saving equipment powered by electricity or extra washing due to continence issues. Due to their conditions, some children are less mobile and get colder quicker. Others have health conditions that mean they can’t regulate their body temperature.
It is shocking to realise that some families will be faced with making agonising choices about the quality of support they can provide for their children. To my mind the level of awareness about these issues and the support available for families is completely insufficient… that’s why I co-signed an open letter to the Government calling for urgent support for families with seriously ill children.
In the face of the severe challenges facing the families we support, I have been reflecting on what we can do as a team to help. I firmly believe that some of the answers lie in working together more effectively.
We have to believe that more unites than divides us. We have to believe that there are shared values across individuals and organisations that will help us to focus our efforts during the current crisis.
One thing we believe passionately is that we all want the best for our children. The inequity in our society does not detract from all of us instinctively wanting a good life for our children, whatever their circumstances or external environment.
For me, nothing sparks this feeling more so than seeing the impact of Lifelites face to face. And as we approach our installation season, and donate new technology packages at 15 children’s hospices across the country, we will be giving our supporters the chance to share in this collective feeling of hope.
It brings me hope seeing the daily collaboration between our funders, our small and hardworking team and the staff and families at children’s hospices. Beyond joining with others to campaign for more support for families, our work at Lifelites cannot address the societal issues above, but we are working hard to create unforgettable moments of connection and joy for families during these dark and troubling times.