Stem cell donations: Calls to give blood disorders more support

Co-founder of Beads of Courage, John Drummond, said it’s the charity’s “ultimate goal” that all children in the UK who are chronically ill or have life limiting conditions should have free access to the programme.

He said he would expect a child being treated on an oncology ward to be enrolled into the programme, but sometimes new staff are “not trained on correct policies and procedures”, partly down to lack of funding.

“Currently we only have a sponsor for the oncology part of our programme and in order for us to support every child in the UK, we would need to acquire much more funding,” he said.

Welsh children’s cancer charity Latch recently withdrew funding for some blood disorder patients because their conditions were not medically defined as cancer, so they “fell outside the charity’s current scope”, a spokesperson said.

In a statement, the charity said: “Latch is a charity that supports children with cancer, including leukaemia (blood cancers), not benign blood disorders.”

It said it was reviewing its remit due to the complexity of some disorders but it has been necessary to pause support while it updates its governing documents.