“We’re trying to help people explore some of the big questions that the sickness of a child inevitably brings up. ‘Why is this happening to us?’ ‘How are we going to cope?’ Or if it all goes horribly wrong, ‘what resources do we have within ourselves to cope with really difficult circumstances?’
“Sometimes a child will have questions themselves about why sickness happens and we can help them explore that. We try not to give answers. It’s about their journey and we very much see ourselves as accompanying the child and the family on the journey.
“When a child is in hospital we can lose sight of them as a whole child within the context of the family, and within the context of a community. We need to recognise that families have more than just medical needs. They need to be allowed to be a family.
“Our medical colleagues rightly have the medicine as the primary priority, but there are things we can do as well as the medicine, not instead of it, that make sure their emotional, spiritual and social needs are met too.
“We are involved in their life for a short time. We need to keep that family unit strong and to give them the confidence to be a family, albeit a family with a sick child, for however long.
“What do I enjoy least like about my work? Sometimes we find it hard to say ‘that’s enough’. This child’s been through too much. Just because we can do something, should we do it? There are huge ethical issues, and sometimes technology isn’t the blessing we think it’s going to be. It can be a huge burden and I hate seeing the burden that places on my colleagues: medical colleagues and nursing colleagues, and the families themselves.
“What I enjoy most about my job are the children, because they are the most extraordinary human beings that I’ve ever met. They have a great ability to be resilient and to live in the moment, which is a life lesson that they teach me every day. I feel privileged to work with them and their families, who are plunged into this chaotic situation and deal with it with enormous courage and dignity.”